Angela Walker in Conversation Podcast Transcripts

  • Angela Walker: 0:03

    Adults with learning disabilities and their families are demanding more choice when it comes to their care and accommodation. Some say the professionals who are meant to help them are not taking their concerns seriously enough. I'm journalist Angela Walker, and in this podcast, I talk to inspirational people and discuss underreported issues. Today, my guest is Ron Brown from the charity Our Life, our Choice. Thanks for joining us, ron. First of all, tell me about Our Life, our Choice. Tell us about this organisation.

    Ron Brown, Our Life Our Choice: 0:36

    Hi, Angela, thank you for having me on. It's a small, independent charity, campaigning charity. It grew, it's grown organically, really. The founders or drivers behind it were co-chairs of a charity that was called rescare, which focused on families. Uh, anita bennett and dr katie booth noticed that they were having contacts with families who were finding that what we might call village settings were coming under threat of closure and, in fact, the residents who had lived there for many years in some cases decades were effectively being presented with no-win options where they would have to leave. They were effectively forced addictions and that obviously caused consternation. Once this was an obvious pattern, they were insightful enough to start to focus on that and from that, effectively, our Life, our Choice, was born. I'm so privileged to be involved. There's just people on there that are just unbelievable, unbelievably talented, unbelievably committed to people with a learning disability, working age adults with a learning disability, working age adults with a learning disability getting a fair shake really let's talk about these villages that you mentioned.

    Angela Walker: 2:11

    Um, what exactly are they and how do they benefit adults with learning disabilities?

    Ron Brown, Our Life Our Choice: 2:18

    well, the there's there's been some confusion about different terms. So villages, congregate settings, intentional communities, shared lives, shared living, there's kind of not been a clear-sighted view of the differences between them, what they each individually mean mean. But what we mean by villages are places where people live, where they live in in a way that they share an environment they would have separate accommodation in, usually in small group, home type arrangements, and it's important to remember that there'll be good villages as well as bad villages. That's about the care that's supplied and that, and that's a sensible and sound judgment. But to say per se that these individual villages are bad, we take issue with that, and we take issue with that for a number of reasons. Those villages villages might supply some activities, some work, some socialising events, but also, obviously, if they're run well, should reach into the community.

    Angela Walker: 3:34

    What is the impact on a person who's been living happily in one of these village situations if that shuts down and they have to move?

    Ron Brown, Our Life Our Choice: 3:45

    Well how I'd answer that. Angela, I'm not sure how long you've lived in your house, but suppose I told you you had to move. You couldn't see any of the people you've been living with, necessarily, but that was a possibility, and that you would go maybe many miles away and that it would disrupt your whole life, your social life, your work life, your, uh, people. You've been in contact with you this many people who you loved you may never see again. What impact would that have? Now, on top of that, add an intellectual impairment, uh, you know a learning disability, and you know, inevitably you would have to process emotions, difficulties. I mean, it would just be horrendous, wouldn't it.

    Angela Walker: 4:38

    It would just be horrendous. Well, we know that moving house for any of us can be one of the most stressful things. So if it's against someone's will, we can only imagine. And the CQC says human rights and people's needs and preferences are at the heart of our registration decisions and inspection judgments. Human rights and people's needs are the heart. Do you think that's right?

    Ron Brown, Our Life Our Choice: 5:01

    Listen, I think they believe that's right. I think it's probably right. I mean, there's a lot in right support, right care, right culture that I think is commendable, is fantastic. Like I say, I just think they've made certainly. So let's look at different levels that's the theory that's the theory of it, isn't it.

    Angela Walker: 5:28

    They're saying that human rights and people's needs and preferences are at the heart of what they do, but is that what we're seeing in practice?

    Ron Brown, Our Life Our Choice: 5:33

    well, I would. I would say there's certainly a case to answer in terms of villages. I think there's certainly a case to answer in terms of increasing the menu of choices and I would say there's certainly a case to answer in that particular document around outcomes. I quite agree with what they're saying, but I think the implementation of it and there's some structural reasons why it won't be implemented unless there's uh, um, you know, specific changes, certainly to some of the guidance in the document. But, um, the you know, I just think they've got it wrong on the evidence with villages. I just think they've conflated um very challenging, inhumane environments with village life. Some, some villages are good, some villages are bad. If the village is not providing good care, usually a change of personnel and leadership sorts that out. It seems very, very drastic to use that as an opportunity to close a village. Really.

    Angela Walker: 6:39

    Is it like supported communal living for adults with learning disabilities? Is that the kind of setting that you're talking about?

    Ron Brown, Our Life Our Choice: 6:48

    their historical roots tend to be that parents have started them when they haven't had any other options and they've developed and evolved the certainly the better ones. Where they provide, you know, they provide care options for people who really can't find very good care options elsewhere. We're not talking about everyone of working age learning disability this being suitable for, but certainly for a small number who are highly vulnerable, maybe even highly challenging, they offer a really good option for some families some of the time and it's it's in our view it's probably incorrect to take a view um that they are an option that families and people with a learning disability of working age shouldn't have, certainly people who live there now and have lived there for decades. It's cruel to forcibly hit them.

    Angela Walker: 7:48

    So what problems are people with learning disabilities facing when it comes to accommodation? And we're talking about adults with learning disabilities, aren't we?

    Ron Brown, Our Life Our Choice: 7:57

    The issues with learning, with accommodation in relation to people with learning disabilities, who have, who have eligible care needs, who have needs particularly higher needs, higher level needs, who are more vulnerable, is that accommodation very often is linked to care. It's difficult to consider one without the other. We know that the regulator would, would not register a village-type offer. Now we know that there's a bit of a pincer movement taking place so that the CQC's attitude, that's the regulator, and the attitude of many commissioners in local authorities is such that for some we've conducted freedom of information requests, for some commissioners wouldn't consider placing someone in a village setting, even if they agreed that was, you know, suitable for their needs. Other commissioners not quite as as hardcore as that. There's also a ratchet effect because you know as inevitable, any care facility, care accommodation with long-term, which has been going long-term, will go through peaks and troughs. Sometimes there'll be good leadership, sometimes there'll be not so good leadership. When there's not so good leadership and the care dips, then it's very easy to say well, you know, that's a village, that's why the cares dipped, um, that that's entirely untrue. You know, the difference between a good care facility and a bad care facility in a village is the same as any other care facility. It's about whether the leadership's in place can put the right culture in place, the right staffing to deliver.

    Ron Brown, Our Life Our Choice: 9:42

    So our best guess is that we maybe lost 40 villages over the last 20 years. And we also know that the new ones are not being registered, even if parents want them registered. We also know they're very, very popular with parents who have them. They're very popular with service users. You know literally what would it be like if you lived somewhere for 30 or 40 years, were quite happy and then were told that you had to leave. The only justification for it would be if there's an evidence base.

    Ron Brown, Our Life Our Choice: 10:14

    You know I'm a great believer in evidence-based practice. If, if there's an evidence base which which says, you know, villages are inherently bad. Well, actually, we've met CQC on two or three occasions and we've asked them can they share the evidence with us? What we think has happened is that there has been a kind of conflation of two or three different concepts which has meant that villages are perceived in an entirely negative light. Really, we know that a number of working age adults with learning disabilities where their behaviours are, to kind of coin the jargon challenging that they have been in assessment and treatment units that they're not something we would support, we would agree they are congruent settings. We've got about 2 000 people in this country in those settings. They've not committed any crime, they're in secure accommodation and some of them very, very sadly, for many years and they haven't got options to move. Villages are not like that, villages are not that and there's been a conflation in our view of those two concepts.

    Angela Walker: 11:28

    I mean, it stands to reason that if someone who is susceptible to challenging behaviour is in a living situation where they're not happy that their behaviour could become erratic could become erratic, what reason is being given then for shutting down these villages? And where then, are the residents being moved to?

    Ron Brown, Our Life Our Choice: 11:51

    We've met the regulator. We've given them the opportunity to share the evidence with us. No evidence has been produced to justify this position and I have seen for myself. For instance, I once had responsibility for quite a large village, not directly, the person running it was very good, um reported to me and um there was a a house there for people with very challenging behavior and it it got an outstanding award by cqc. You know there was an inspector who looked at it, who, who was professionally very grounded, knew that, knew the subject area and recognized the outcomes were outstanding. So there's at least a contest about the evidence base but it's not been shared with us in the cqc document that I've got here.

    Angela Walker: 12:47

    Right support, right care, right culture, they say. For people with a learning disability and behaviour that may challenge NICE guidance recommends people should have the option to live alone with appropriate support if they prefer this and it's suitable for them. If adults prefer not to live alone with support or it's not suitable for them, offer them the option of living with a small number of people in shared housing that has a small scale, domestic feel. Involve people in choosing how many people and who they live with. But then it does go on to say, um, while we continue to refer to nice guidance in describing what small means for how we apply our approach. You want to be clear. This is not the same as having an upper limit for the size of services. So they're saying that people should be given the option of living in a smaller, more like house type setting. Is that the kind of thing that you are campaigning for, ron?

    Ron Brown, Our Life Our Choice: 13:51

    No, no, not really. I wouldn't have a problem with what they said there. If you notice, that's linked specifically to people who might have challenging behaviour. That's fair enough. Our view is about choice. It's not about restricting choice, really, unless there's evidence which says one type of uh provision is, you know, is is uh problematic in itself. So we, we want choice, we, obviously, if people want to live like that and it and it's good for them, then then that's great. There's no problem at all with that.

    Ron Brown, Our Life Our Choice: 14:28

    What what I would push back on is is slightly this narrative that you know, know, everyone with a learning disability of working age will be able to live somehow in their own independent flat or, you know, small accommodation in the community. I've worked in the community. You know a lot of the time they're not free choices. People are vulnerable. Cuckooing that takes place in urban areas is, you know, is a real problem. Local criminals, usually drug dealers, might target someone with a learning disability who lives on their own, might receive some level of care and support and they'll use that facility as a base for their criminal activities. And also the treatment of the learning disabled person who might at first view these people as friends is is poorly. You know, the idea that people with a learning disability are not often living very isolated, very vulnerable, very lonely lives is quite different to the narrative that's presented. Also, what I would say to you is that in supported living examples which I think is what that's alluded to, what we'd call supported living one of the one of the issues with that is I've seen tenancy agreements where they've been signed with a cross. You know, I've seen tenancy agreements where people agree for the person with a learning disability. And I've certainly seen a number of people with a learning disability who have tenancy agreements who would have no idea what a tenancy agreement is, what that tenancy agreement means. And again, I'm not against that. I think it's a great thing for the vast majority of people. With the right support, that will work well.

    Ron Brown, Our Life Our Choice: 16:34

    But there are people, two categories one where they've lived on a village for a very long time 10, 10 years or more very different to emptying what used to be called the old style psyche bins, which were appalling, you know, were terrible. I've seen people moved out of those and they've done very well, particularly where they've moved into housing in the community with the staff that they were used to over the years by this kind of um, this kind of uh ratchet effect and um, uh pincer movement. It is is not the right thing to do. It's not the right thing to do for people who live there and it's not the right thing to do as an option for new people who might join that.

    Ron Brown, Our Life Our Choice: 17:28

    I worked for an organization and one of the things that struck me, it did have a village and you know, over the years the village had good reputation, bad reputation, depending on the leadership in place and the quality of care provided over time. What struck me was, in my time, which I found increasingly difficult, I was the director of care there and I turned down 14 families who would have been ideal for that village, 14 who then went off and got effectively substandard care. Um, you know, it ought to be a matter of choice. So what? What we want to do at our life our our choice. We want to for villages to be treated fairly that exist.

    Ron Brown, Our Life Our Choice: 18:19

    We want what I would call the care environment to be judged is it suitable? Is it suitable for the outcomes that are being claimed and is it something that, frankly, parents and families and the people with learning disabilities themselves themselves, they are all supportive of, and if you've got 95 percent of people at a facility that are supportive of it, that are living great lives, there's great outcomes. You know it really. It really beggars belief that new initiatives that might do the same are automatically off the table tell me more about the res care petition shall I read you it.

    Ron Brown, Our Life Our Choice: 18:58

    It's very, it's very short okay so we call on the cqc to amend their current guidelines so that all people with learning disabilities and or autism have the same fundamental human right to choose where they live and receive care according to their individually assessed needs, as does everyone else. Well managed and regulated group and village communities should be considered equally, alongside small urban and rural residential living, supported living and independent living. So we we just we want to expand choice and we want the nature we've got the nature of the sector or market to be determined by the people who use it, rather than to be overly prescribed top down.

    Angela Walker: 19:45

    So tell me, ron, what happens in a family situation where there's an adult child and they're looking for somewhere suitable to live. You're saying that there's not really a great deal of choice. What's the process? What are the options available to somebody like that?

    Ron Brown, Our Life Our Choice: 20:05

    The first port of call would be an assessment of eligibility. So they'd apply to their local council Probably they're already known as a child. They'd apply. There'd be an eligibility criteria. They would then be judged to be eligible on on a scale you know, very high needs, medium needs, low needs, and then at that point, having received their eligibility, um, they would. They would get a determination which the family would, um, would the person with the learning disability if they, if they had full capacity, would sign off and if not, if someone had legal rights or parent would would kind of sign it off as accepting that determination. Of course, the reality is the end point. Uh, if the getting those needs met in a way that is suitable for the person with a learning disability, for the family is about having different options available, really, because the reality is, if the sector's driving homogeneity, it doesn't really matter what you would prefer, you'll be stuck with the homogeneity.

    Angela Walker: 21:30

    So in that situation, say the person's had their needs assessed and they are eligible, what options would typically be presented to them?

    Ron Brown, Our Life Our Choice: 22:02

    I would say unstated preference in local authorities for what we call supported living in the community, which is what we talked about earlier. There's a number of reasons for that. One one narrative to the stuff you've read from CQC earlier, but also how budgets operate, you know. So it's uh. One of the things we'd like, as as as as a campaign, is for real costs to be looked at. You know, transaction costs, costs.

    Ron Brown, Our Life Our Choice: 22:27

    One of the incentives for local authority to push certain types of, um, certain types of care is that one type of care supported living in the community in a small setting doesn't, isn't fully funded by the local authority. Some of it's met as housing need and that housing need basically local authority claims and passports out, so it doesn't hit their budgets. I mean, the bottom line is that there's a way that individual budget holders can defray costs of care. We've already spoken how accommodation care is linked effectively for a lot of these people. They can defray costs on hits to their budget by effectively having outcomes which prefer a certain type of care. Now that's a perverse incentive. It seems to me contrary to meeting eligible needs, but also, I think, in terms of value for the taxpayer. It's a mistake because you know. So let's say, for example, in well-run care, unplanned calls on health service, emergency situations, certainly admissions to very rigid regimes like the assessment and treatment units would be diminished.

    Ron Brown, Our Life Our Choice: 23:56

    We know that if people are happy, they're more likely to stay well for longer. Aren't they Going back to the? To the people that challenge type situations? What? What often will happen in those situations if they have inadequate care? The end of their care journey is in a highly restricted environment that they're usually admitted to on a short term for an assessment, but in reality many of them don't get out for years and years and years, if at all. Can I just read you one thing from someone who signed our petition and it really did strike me this. Uh, I won't say her name, but if if people visit our petition, they'll see my son has autism spectrum disorder and has already been through the stress of being uprooted once from his care home. It brings huge stress to families in having to find another placement. Freedom of choice is vital without over prescriptive parameters, and I think that sums up where we're at really, and that's what we hear from parents all the time and families and people with a learning disability themselves.

    Angela Walker: 24:56

    Why do you think people with learning disabilities and their families are not being heard when they're asking for this choice?

    Ron Brown, Our Life Our Choice: 25:05

    I think there's a number of reasons. We've talked about the pincer movement, the ratchet effect. If one looks at stakeholders, just analyzes stakeholders powerful stakeholders, professionals, their professional associations, I would say certainly large corporates, private equity funds, private equity funds I'm not against um uh, private supply, by the way, but far from it, I think it's. It does wonderful things at times. But it's clear that in this, in, in any analysis of stakeholders families and people with a learning disability themselves, despite whatever rhetoric, despite whatever jargon is used, it's obvious that their power, if you like, their ability to influence, is much less than other stakeholders. And you know that can't be right really.

    Angela Walker: 26:07

    Are you saying, ron, that the client um, if you will, um? The needs of the client are not being met because the needs of the other stakeholders are taking priority I think that's worth looking at.

    Ron Brown, Our Life Our Choice: 26:25

    I don't think that's the only thing I mean. There's obviously, where accommodation is concerned, there's huge barriers to entry to to the market.

    Angela Walker: 26:32

    Well, let me put it this way surely, in this situation, when we're talking about housing for adults with a learning disability, their needs and preferences should be number one, the top consideration. It should trump everything else, because we're talking about their health and well-being. Do you think that patients, clients however you would like to to think of them adults with learning disabilities who need housing, do you think that they are being treated as the priority in this system for housing?

    Ron Brown, Our Life Our Choice: 27:16

    I would say not. But I would add one proviso to what you're saying. I think it's fair and reasonable to restrict choice where we know evidentially that that particular choice is actively harmful or dangerous. And also I'd add another caveat, and that would be around safety. So I think it's fair and proportionate and reasonable. But outside of that, I do think empowering people with a learning disability of working age, their families and also, by the way, natural communities and their communities, empowering them to come up with their own solutions that they choose, that's entirely different to funding which we've talked about. In terms of the assessment, of course, eligibility and funding is a matter for the state. That's determined by whoever takes a view of what we as a society regard as eligible, regard as fair for funding. After that, yes, I do think that people with a learning disability, their families and communities should be much more significant stakeholders than they are.

    Angela Walker: 28:28

    How much of an impact do you think suitable accommodation can have on the overall well-being and lifestyle of an adult who's got some learning disabilities?

    Ron Brown, Our Life Our Choice: 28:41

    Let's look at the ATUs that we mentioned 2,000 people in this country are being helped so remind, reminds us what ATU is. They're assessment and treatment units, so they're usually some level of secure accommodation where over 2,000 people in this country are detained without having committed no crime, without any real prospect of leaving, and many of them and I think if we opened up the sector in the market to more innovation, more creativity, was more choice-led I think we'd empty those.

    Angela Walker: 29:27

    Wow. So you think that people are being kept against their will, would you say?

    Ron Brown, Our Life Our Choice: 29:36

    Well, as often with these things, there are legal processes in place which would lead you to believe that it's in those people's best interest to be kept there. But but of course you can't. You can't divorce that from what. What realistic options are available? And with realistic options, uh, with a sector or market that was incentivized for creativity, choice? I have no doubt in my mind, having worked in the sector for well over 30, I'm admitting to 30, but it's a bit more than that years that they would be emptied.

    Ron Brown, Our Life Our Choice: 30:21

    And they would be emptied for better care environments and, if you want my honest opinion, I think the value to the taxpayer would be higher.

    Angela Walker: 30:32

    So do you think that people are being kept in secure units, some of them unnecessarily, when they might be better suited to some kind of independent living accommodation? For financial reasons.

    Ron Brown, Our Life Our Choice: 30:47

    I wouldn't say independent living accommodation, I wouldn't use that term but if other care options were available, would they be better placed at better value for the taxpayer? Yes, they would and you wouldn't have to go. You wouldn't have to go very far, angela, to find families whose adult children were in those environments where the families had, you know, incredibly difficult, difficult time where people were admitted ostensibly for a short term and many, many years later are still there gosh, I would have to catch up with some of those families.

    Angela Walker: 31:27

    I'd really like to talk to them. Um, how can people get their voices heard, then, ron?

    Ron Brown, Our Life Our Choice: 31:33

    I would ask people to look at signing our petition. I would ask people to visit our website. I would ask people to look out for stuff. We've got a conference coming up in April where that's an opportunity. Please encourage your political representatives to go. You know, this is one of the great injustices of our age. So the website address is our life, our choice. Dot, co dot.

    Angela Walker: 32:02

    Uk perfect what, ron? Thank you so much for coming on and telling us about your campaign. I look forward to hearing about the conference as well. And thank you so much for coming on and telling us about your campaign. I look forward to hearing about the conference as well.

    Ron Brown, Our Life Our Choice: 32:12

    Thank you very much. Thank you, Angela. I really appreciate the opportunity. So so good of you, so grateful. Thank you.

    Angela Walker: 32:18

    Thank you, you're welcome. You've been listening to Angela Walker in Conversation. Thank you so much for joining us. I hope you've enjoyed the show. Please do share it with other people who might be interested, and you can find more stories like this and more podcasts on my website, angelawalkerreportscom. Until next time, take care.

  • Angela Walker: 0:07

    How can a previously healthy young woman die from swelling to the brain with no explanation? 25-year-old Gaia Young was admitted to hospital in July 2021 with a severe headache and vomiting. She died soon after. And vomiting. She died soon after. I'm journalist Angela Walker, and in this podcast, I talk to inspirational people and discuss under-reported issues. My guest today is Lady Dorit Young, gaia's mother, who's campaigned tirelessly for answers to her daughter's death. Lady Dorrit, thank you so much for joining me today. I'm so sorry for your loss. First of all, it's a terrible tragedy. Can you tell us what happened when Gaia first fell ill?

    Lady Dorit Young: 0:53

    Angela, firstly, thank you so much for shining the light on Gaia's case. It's so important, not only for Gaia but for so many other parents in similar situations, so many other parents in similar situations. Okay, it was a Saturday evening and we had some guests in the garden and Gaia removed herself virtually from the dining table without saying anything. She then complained to me about a massive headache. I originally thought it might have been a heat stroke because it was a hot day, but then she started vomiting and I called basically 111. They then transferred to the ambulance and the ambulance arrived about two and a half hours later on.

    Lady Dorit Young: 1:38

    By then, gaia had a constant headache. She talked to the ambulance for about half an hour, completely normal, told them what happened and they suggested to have a checkup in hospital. We were then sitting in the ambulance for about half an hour. They tried to give her something against vomiting and Gaia begged me to come with her, and the ambulance denied it, supposedly COVID. Ambulance denied it, supposedly Covid. I also asked the ambulance to take Gaia to the USLH Hospital because it was the closest hospital and I thought I would come in the morning and collect Gaia. And I saw Gaia the last time in the ambulance, never again alive. She died 17 hours after arriving at UCLH Hospital.

    Angela Walker: 2:32

    And talk to me about what happened after that. In the morning you said you thought you'd go to collect Gaia. What happened?

    Lady Dorit Young: 2:44

    I hadn't heard anything during the night.

    Lady Dorit Young: 2:48

    I had the telephone next to my bedside. I arrived at about 10.30. I was already very anxious as I didn't know what was happening. I was not allowed to go up to the ward. Security basically gave me a telephone number to call.

    Lady Dorit Young: 3:07

    Ward Security basically gave me a telephone number to call and the person who picked up that phone call was the nurse in charge and she asked me could it be that Gaia had taken drugs, that she was intoxicated? And I said that would be completely out of character. Gaia is a clean, living young woman who doesn't even want, like me, to drink coffee. Then she said do you want to speak to Gaia? And I said yes, I want to speak to my daughter. But she said but Gaia doesn't make an attempt to talk to you, which was very, very strange and unusual. We were very close. She then held the phone to Gaia and the only thought in that moment that came to my mind was to ask Gaia, gaia is talking difficult for you? And then this little pause and this feeble voice said yes, and I just did not know what to think about it. And then the nurse said Gaia doesn't make any more effort. I tell you what, dorit, you go home and I will escalate Gaia to the ward round and then, as soon as the ward round finished, a doctor will call you and tell you what's happening. This phone call never came.

    Lady Dorit Young: 4:30

    I then went home and I couldn't make any sense out of what happened. I was then called. This was 10.30 in the morning. I was called at about five o'clock in the evening by a junior doctor telling me sort of we have bad news, dorit Gaia is in a coma. And I thought coma, people wake up out of a coma. Then I said can I see her? Oh, she's in ITU. Now you have to talk to them. I don't know, I don't think you can go in.

    Lady Dorit Young: 5:14

    I still went and now I could walk straight into ITU and there was Gaia. She looked very peaceful, like asleep. She was obviously on lots of appliances, but nobody came to me and said your daughter had died. I thought coma, coma, she's asleep, she will wake up. It can't be that bad. And I still remember very vividly the ITU consultant sitting in a corner, almost in a knot with his legs, not saying a word to me. And then I said so what am I supposed to think of that? And then he said if this would be my child I would be very worried and that was all. And the fact that Gaia had died at three o'clock in the afternoon was never discussed with me, never explained. Afternoon was never discussed with me, never explained. Even the fact that she was dead at that moment I saw her was only implied. It was never. Nobody ever talked to me about Gaia's death actually.

    Angela Walker: 6:39

    So when you say that Gaia had already died and you were seeing her, do you mean she was brain dead at that point? Yes, but her body was being kept alive by the equipment.

    Lady Dorit Young: 6:52

    Yes for organ donations.

    Angela Walker: 6:57

    And what did they tell you about what had happened to her, about why she was in this condition?

    Lady Dorit Young: 7:06

    They didn't tell me anything really. They certainly didn't mention any raised intracranial pressure. They said investigations are ongoing, lots of experts are now involved and originally they were thinking that one complication with covid, the sinus um, I can't think of it now a sinus like a kind of blood clot in the brain the idea of heat stroke was still a possibility. Um, disability, yeah, that was it basically, and I was obviously completely unable to have a clear think, to have a clear thought, to ask the right questions. It was like a steamroller had rolled over me and I had to behave. There were constantly nurses, doctors, then immediately the organ donation nurses approached me. So there was one thing after the other. I was on autopilot.

    Angela Walker: 8:18

    I know you've mentioned to me previously that initially when she was admitted to hospital, that initially when she was admitted to hospital, it was repeated that they thought she'd had a lot of alcohol to drink or that she'd taken a lot of drugs or something. Tell me a bit more about that, because is that something that you think affected the way that her case was handled?

    Lady Dorit Young: 8:42

    Angela, absolutely, because it was a Saturday evening. Gaia was a young woman. It's the first doctor who saw her wrongly assumed intoxication, because I assume they see lots of young people on a Saturday night who are being intoxicated. But in Gaia's case she entered the hospital completely talking normally, not only to the ambulance but to the first nurses. She only began to behave strangely inside the hospital. But it seems as if one healthcare professional doesn't talk to the other one or they don't read the notes they don't want, they almost don't try enough to see the full picture and they certainly didn't reach out to me to find out if Gaia was a recreational drug taker. And the moment the word or the idea, the assumption of intoxication came on the scene, the following doctors held onto it like hell. Doctors held onto it like hell, as if they didn't even want to check it. To test it, they did a tox screen at about midday.

    Lady Dorit Young: 10:02

    The following day, the following day, the following day At midday they finally did a tox screen, which of course was negative, and it was even suggested and Gaia denied, because Gaia could talk until the moment of death and she repeatedly denied drug taking. And yet one of the junior doctors was still reported as saying oh yes, that looks all like intoxication, to which she still has to admit to. And this sentence I will not forget until the end of my life. It is so outrageous to automatically assume that my daughter is a liar. When she was a very kind, very straightforward, honest person, she would have never lied. And when the consultant then saw her he then said no, no, no, this patient does not look like intoxicated, it is something in the brain. But it still turns up in the medical news, in the medical records later on as a possibility that she could have had an unknown neurotoxin or drug or whatever.

    Angela Walker: 11:18

    At what point did you realise that Gaia had died? Dorit?

    Lady Dorit Young: 11:25

    God, it's almost as if I still haven't realised it, because I was so much on autopilot, I had to function and then Daya died. Then we started to fight. I never had a rest and because I'm campaigning, I have not been allowed to move on to grief and I think I still haven't really been able to grieve, haven't really been able to grieve. So I'm very I feel I must like split. One part in me has realised Gaia is dead. The other part in me is still hoping, still hoping for a miracle.

    Angela Walker: 12:05

    I think it's very difficult to begin to grieve when you're still searching for answers about what happened. Talk to me about the inquest, because there was an inquest into Gaia's death. Tell me about that.

    Lady Dorit Young: 12:21

    Yes, the inquest was on the 14th of February the next year and beforehand I had basically written a submission with a neighbor, with a professional neighbor, and we did our own inquiry from the medical records and this was a very, very clear, thoughtful report which was sent to the trust and to the coroner and both didn't respond. So my first experience with the coroner was that she's not interested really in hearing my position or so. Relatives and families should be in the center of any inquest. Then she basically told me at some stage oh, I have reviewed the papers, it's not necessary to do a pre-inquest review. This is against her own coroner's rules. I protested.

    Lady Dorit Young: 13:24

    We then had a pre-inquest review and I stood up and requested a neurologist expert witness because by then it had become it was obviously accepted that Guy had died of a brain condition and I remember very vividly how the coroner then basically turns to the trust representative, to the trust's counsel, and saying that you make sure that the trust chooses the witness who can explain Gaia's brain swelling. That was the request from the coroner to the trust, but the trust in the end didn't follow that request and they brought in an acute medical doctor who had not treated Gaia, but he was the author, the co-author, of the serious what is it called the trust investigation paper paper which, of course, was very pointless because it didn't deliver any differential diagnosis, it focused on the wrong condition and it was basically a very shoddy investigation. So the coroner in the end accepted the trust's investigation but not my report.

    Angela Walker: 14:57

    It's interesting, isn't it? It sounds like the trust were invited to be marking their own homework in a way, and I think it would have made sense to have a neurologist there to explain about what might have happened to Gaia. I know the coroner, mary Hassel, recording a narrative conclusion and stated a CT scan was not conducted, as it should have been, immediately following admission to hospital. Have you ever had a response from the Trust about why a CT scan was not carried out on Gaia?

    Lady Dorit Young: 15:31

    No, I had a kind of yes, we should have done one, but it might not have shown anything. The brain swelling might not have developed enough to be seen. It's this constantly misleading, this, constantly giving fake explanations? No, because it's not only the CT scan. Gaia was basically failed with basic care. Basic tests weren't done. The CT scan is only part of it.

    Lady Dorit Young: 16:10

    Far more important is the fundoscopy. Any patient with a massive headache like Gaia, as one doctor said to me, you would have wanted to see Gaia's eyes because via the eyes you can look straight into the brain and you get an idea if there's anything seriously wrong. There was no fundoscopy done and also ammonia test, which is a simple test. Again, you should be doing it. If a person is confused. Gaia had both symptoms. She should have had a fundoscopy, which is a basic test For every doctor. It's on the curriculum. And the ammonia test is a quick, simple test. But what the trust then does? It's almost like gaslighting. They told me oh, oh, yes, we should have done a fundoscopy, but Gaia would not have allowed us to do it.

    Angela Walker: 16:59

    So they blame the patient, the dead patient, which is hugely, hugely awful, and and a fundoscopy just for for the listeners really is when the doctor takes a device and they stare and they look in into the eye and they can see through the pupil, can't they? And they can get a look at what's going on behind the eye and that is quite a standard test. That, um, if you have a headache and you go to the gp, they, they will do that test often, won't they, to rule out things like a brain tumour that they might be able to actually see. The coroner also said knowing of the intracranial pressure would have resulted in head-up nursing, transfer to intensive care and possible intubation. All of this would have afforded her a better chance of survival. What do you want to see happen now, lady Dorrit?

    Lady Dorit Young: 17:59

    Oh, wow, okay, Number one I would like a new inquest, because the old inquest was absolutely pointless and it didn't really do what it's required by law to find answers. It's a completely unsatisfactory determination. She did no really efficient inquiry. I also completely agree with Will Powell with his fight for a duty of candor for individual healthcare professionals, because I feel that none of the clinicians had really been honest to me. They have basically either tried not to talk to me or they have been hiding behind second narratives been hiding behind second narratives.

    Angela Walker: 18:58

    Just to be clear, a duty of candour would require medics to be honest about when there'd been a mistake or medical negligence, because at the moment, I believe, they're not required to do that by law and so when mistakes happen, they're not always admitted at present. So that's about the duty of candour. I want to read you this statement. This is from UCLH and I just received this the other day. It says we understand the sudden death of a loved one has a lasting impact and offer our ongoing sympathies to Gaia's mother. In 2022, we agreed to commission a range of independent experts, including a neurologist, to explore further the circumstances surrounding Gaia's death. We agreed with Lady Young the scope of the reviews and the experts who will undertake them, and in August 2024, she gave her consent to release Gaia's medical records so reviews can begin Going on. The UCLH statement says we're committed to learning from external opinion and scrutiny and will share the reports with Lady Young and our teams. We've already developed new clinical guidance and training following our internal investigation. What are your thoughts about that statement?

    Lady Dorit Young: 20:20

    Yes, a supposedly independent inquiry has started, but we are right at the beginnings. So the first of four experts has been commissioned. So the first of four experts has been commissioned. But your listener has to understand what it means for me to be part of that inquiry. For example, it means that we have to agree on experts. The trust has access to any kind of legal firm, any kind of experts. They would know exactly.

    Lady Dorit Young: 20:55

    Is this expert more inclined for the claimant or for the trust, whereas for me it's a completely new field. I have to ask around any kind of contacts. I have to get a list of experts whom I can then trust. This is number one. To word the questions, it's a minefield. It's a 24-7 job. For me, it's incredibly difficult. I have no help with it. I have no legal team, whereas the trust has unlimited funds and unlimited legal teams. And so far we have seen. Why did the trust not bring a neurologist when it really mattered? Why agree now, years later on? All right, we are going to, basically because she hasn't shut up. She's still asking questions. So let's give her her independent investigation, investigation, let's see what comes out of it?

    Angela Walker: 22:01

    Let's see if it is truly independent. That's what I want to ask you how confident are you in this inquiry?

    Lady Dorit Young: 22:12

    given what's already happened, I feel that the trust is very invested in not finding a diagnosis for Gaia because then it would have a clinical diagnosis just based based on circumstances. It's very, very difficult. They know all that and, for example, I'm still waiting for genetic testing for gaia because one of the one of the possibilities is a genetic illness, and the trust is constantly stalling my request to get the results back, and these results are supposed to feed into the investigation. If we don't get the results, it's very difficult. So one thing is based on the other thing and my hopes are pretty much squashed by what I have seen so far how the trust has treated me with disrespect, with lots of words, with false narratives, with nobody really wants to come forward to talk to me besides some nurses who did speak to me. It's so difficult for a normal person to get any justice, to get any transparency if things have gone wrong in hospital and if the clinicians have failed the patient.

    Angela Walker: 23:44

    You are such a determined and strong woman and you've decided, you've committed to finding the truth for your daughter. Has there been any point where you've thought I can't carry on with this anymore?

    Lady Dorit Young: 24:00

    Angela. All the time, All the time, I'm doubting to do it another day. I had very dark periods in my life because my life has obviously completely changed. This campaign is 24-7. I have, in a way, lost my business. I do this every day. It's so demanding Without a legal team. I have obviously fantastic friends and neighbors who are helping me, but they're feeding me the information, but yet every email, every letter is channeled through me and that obviously I have been guilty of delays because it's just from sometimes too much.

    Angela Walker: 24:45

    Well, it's a very stressful situation to be living. You've been quite critical about the role of the coroner in Gaia's case. Do you think there's a systemic failure with the coroner system in this country?

    Lady Dorit Young: 25:03

    Angela, it's a very good question. I think so because very few coroners are now medically trained, so they need to look to the hospitals to get case information. And if hospitals don't do their own proper investigation, the coroner's basing their investigation on very flawed information. And that's exactly what happened in Dyer's case. The coroner favoured the trust's witness and their line of investigation and completely neglected my investigation, what I had found out, and that is, from my point of view, an utter breach of natural justice. And from there I would say, yes, the coronial system is not fit for purpose.

    Angela Walker: 26:00

    And, to be clear, the investigation that you'd carried out. This just wasn't just you going onto Google. You had experts, didn't you, who were helping you with your investigation. So do you feel, then, that the coroner should be more independent?

    Lady Dorit Young: 26:19

    They should be seriously independent, they should be medically trained, they should really listen to both sides and obviously, like in Gaia's situation, a one-day inquiry is nothing. It's just not even touching the investigation and if I really look at her determination, it's constantly. If this would have happened, then this if this it's an essay of ifs, this is no fact-finding. It's an essay of ifs, this is no fact-finding. This is ridiculous, and I'm so surprised that a coroner can get away with such a pointless investigation and pointless determination. Yes, it's about truth. For example, why can't the ITU consultant in Gaia's case? Why can't they tell me the truth? Gaya's case has the value, the legal value, of about eight to 10,000 pounds.

    Lady Dorit Young: 27:25

    I would not want to go to court, but if I had the truth, not only would it allow me to move on, it would allow those consultants to move on, and the term restorative justice came to my mind. The truth would help everybody and I think the way the system works at the moment is incredibly short-sighted and I feel that mistakes are being repeated and repeated because nobody can really move on. You have all these lingering, what do you call it? Dark holes, for example, the fundoscopy. Why is it not being routinely done? Nobody has told me. Nobody knows, nobody wants to know. Done Nobody has told me. Nobody knows, nobody wants to know. Medicine becomes a general gray zone and that's very sad and very bad for patients.

    Angela Walker: 28:24

    You know most of us, if we make a mistake in our working life, nobody dies. But when doctors make a mistake, you know every day they have that burden and it is a heavy burden to carry. If I make a mistake, someone could lose their life. With this in mind, do you think this is why we are seeing this kind of reluctance to admit to mistakes?

    Lady Dorit Young: 28:55

    Yes, but I do think as well that the trust managers have put so much pressure on doctors, too, to keep their reputation safe, that doctors have become very frightened. To be honest, I don't think that doctors don't want to be honest, because it's in their interest to be honest to patients, to tell them what happened, to tell them where they failed. Not to tell the truth must be a burden in their lives too. It can't feel good to know exactly what happened, and I believe that the ITU consultants in Gaia's case know exactly why Gaia died. But it then became a second narrative, and to live with that kind of obfuscation, semi-lies, can't feel nice obfuscation.

    Angela Walker: 29:58

    Semi-lies can't feel nice. We've talked about Gaia's death. Could you tell?

    Lady Dorit Young: 30:03

    me about Gaia. What kind of woman was she? Gaia was a very bright girl. She had a first in history. She loved history. She got that from her father, but then she decided that history wasn't safe enough. So she basically wanted to work in IT. She wanted to become a project designer and she was just on her second job as basically self-taught IT expert. She completely devoted herself to studying IT, and her boss her female boss gave a wonderful eulogy to Gaia how engaged she was for women's rights at the workplace. At the workplace, gaia was always thinking of others and never wanted to put herself in the foreground, never wanted to outshine someone. She had an extensive circle of friends. Gaia was also a wonderful dancer. She was a ballroom dancer since her university days at Bristol. She was very artistic. Gaia was a lovely, lovely person to have around and we were extremely close, and so my life is incredibly lonely and bereft without Gaia.

    Angela Walker: 31:33

    Well, gaia sounds like a wonderful person and I'm so sorry for your loss, and thank you for sharing Gaia's story with us and telling us about your campaign for the truth, to find out how she died, and I wish you every success with that, because I know to be at peace, that is something that is really important to you. Thank you so much, lady Dorrit Young, for joining me. Thank you, thank you, angela. Thank you for listening to this podcast with me, angela Walker. On my website, angelawalkerreportscom, you'll find many more podcasts and articles about human interest stories like this one. Don't forget to subscribe and follow this podcast, and please do leave us a review. Thank you, until next time. Goodbye.

  • Angela Walker: 0:03

    Children of Black Caribbean descent are far less likely to achieve a grade 5 or above in GCSE English and Maths than their white peers, as, according to government figures, just 29% of boys will get those grades, compared with an average of 47%. What's more, children attending a poor quality school as rated by Ofsted are more likely to end up in prison later on. Why is this and what can be done about it? I'm journalist angela walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guests today are education trainer and consultant and founder of westside and lewisham young leaders academies, david okoro and chadira nome, ayear-old, who joined that academy three years ago. Thank you both for joining me. Chidera, I know you're achieving great things after attending Westside Academy and I'm really looking forward to hearing all about that in just a moment. But first, david, I mentioned some of those national statistics about young people falling behind when it comes to GCSEs and exam success. Why do you think that is?

    David Okoro: 1:11

    I think there are a number of reasons why this situation is continuing, and when I say continuing, this is not a new thing. It's not something that's just happened in the last five years or 10 years or or 15 years. This is a 40 to 50 year problem and there are a number of factors, um that I think there are the socio-economic factors that are impacting upon black young people and their families and poor housing, high levels of unemployment, um and and lower wages, living in disadvantaged areas and generally attending schools that are underperforming. And then you know, we have to be honest as well and say that there are elements of institutional racism that have impacted upon Black young people and, as I said before, this is not a new thing. This is something that's gone on for the last 40 or 50 years and that's what spawned the growth, really, in black supplementary schools over the last 50 years to try and redress that situation and that problem.

    Angela Walker: 2:19

    Yeah, it's interesting you mention that because I know in the 1970s we saw the rise of Saturday schools, which was to support black children because they weren't achieving their potential. Can you tell me a bit about that movement, David?

    David Okoro: 2:33

    Yeah, you know, it's a movement really that was spawned, as you said, out of the underachievement of black young people in British schools, of the underachievement of black young people in British schools. And this is those black young people came from families who were quite, who were quite aspirational and um who had a really high focus on on education and um. It came at a time as well when black young people, especially um Caribbean boys, were being, were being stigmatised as being educationally subnormal and were put into schools or into classes where it was inevitable that they would not reach their potential. And this came as a shock to many African and Caribbean families. It came as a shock that their children were struggling in school or that schools were failing them. So what they did? Instead of just complaining and and moaning and not doing anything about it, they put their money where their mouths were and they set up supplementary schools, stroke saturday schools right across the country. Every major city and some small towns in the UK would have had a black supplementary school to help support black young people through their educational journey, because they knew that the support that they needed they were not getting in school.

    David Okoro: 3:58

    As I mentioned before, there was institutional racism, but there was also outright racism as well. Black children you know being called racist names in classrooms, not by children, but by teachers. I mean, this was quite a common thing back in the 60s, 70s and even the early 80s, when I was still in school. There was still racist name-calling in the classroom and that was seen as standard really. So black communities set up supplementary schools where young people could learn academically, but they could also learn other things as well, such as black history and other life and social skills that would help them during their school journey and would also help them during their journey into careers and employment.

    Angela Walker: 4:52

    And is it these Saturday schools that really kind of influence you and encourage you to set up these academies?

    David Okoro: 5:02

    Definitely, and I was. I was one of the recipients of um, attending a supplementary school and and you know, I'll admit, when I was in school I was um, I was told by my teachers that I was going to end up dead or in prison. Um, I was excluded from school when I was in year 10 and um in terms of aspirations. I remember speaking to my careers teacher when I was 16. And I said to my careers teacher I would like to be a pilot. And my careers teacher said to me well, you know, david, you're a big lad, why don't you just focus on sports? And that was quite common. That was quite common. And when I speak to some young people today, they are still having similar conversations with their teachers who have low aspirations for them.

    David Okoro: 5:48

    So the reason why we set up the academy or the academies, is because we were concerned about the life chances for black young people in education and post-education as well. So we decided to set up Westside Young Leaders Academy first, which was primarily aimed at boys. And it was aimed at boys because when you looked at all of the negative statistics, black boys were near the top of the list, whether that was educational outcomes, whether it was exclusion from school, whether it was contact with the criminal justice system or whether it was careers and employment. Black boys were not doing well, so we decided to introduce interventions via the academy to help redress that. We didn't see anything positive going on in schools really, so we decided to do it ourselves and try to put together a range of interventions and programmes that would help to raise confidence, raise aspirations, but also equip young Black people with the skills, the qualities and the mindset that would help them to be successful in school and beyond.

    Angela Walker: 6:59

    And I'm going to bring you in here, Chidera, because you've attended Westside Academy. What did you do there and how has that helped you?

    Chidera Nome: 7:09

    so I first attended west seven in 2020, when I was, I think, 11, and the only reason why I went was because I wanted to be the person I've always wanted to be. Before I went to, I was always in my shell, very quiet, not really wanting to venture out of my comfort zone, not because I was introverted, but because I was just so scared of talking to other people, what people think of me. You know how to start conversations. So in Wylet, I learned a range of things, starting with my history. In school, I never really knew where I came from. I always knew who I was. I knew what slavery was. I knew how we came from. I always knew who I was. I knew what slavery was. I knew how we came out of it. I knew the day of emancipation, but I never actually knew my history.

    Chidera Nome: 7:50

    So in Wyla, I learned a lot about my history and where I came from, who my ancestors were. I also learned a lot about my worth. I remember before I went to Wyla, I did know who I was, but I wasn't sure of myself. In Wyla, I learned about my worth. I did know who I was, but I wasn't sure of myself. In Wyler, I learned about my worth. I learned about who I was and who I could become. Those are the type of stuff they teach in Wyler. They teach us how to not only become the next leaders of the next generation, but how to be sure within ourselves, how to know our worth. That's a big lesson that's taught at Wyler. Lots of different kind of initiatives that are set in place, such as leadership traits we are bearing, and courage and decisiveness. We have the 13 steps to success. One of them is know your worth those lessons that are taught to help us, as Black youths, achieve our potentials.

    Angela Walker: 8:37

    And do you think that you've seen amongst your peers some young people getting sidetracked, getting swept along with you know, perhaps criminal behaviour, things that aren't going to help them move forward? Do you feel like the Academy has helped guide young people away from that and down the right path? Yes, definitely.

    Chidera Nome: 9:00

    I know that when I went to Wyla first there were a couple new boys that had joined and I did speak to them a few of them and I kind of gauged where they'd come from, their background. You know who they were and then I spoke to them a couple years later and they were two completely different people. Wyla as an organisation definitely guides young black men away from a path of being criminals and although it doesn't completely steer them away, it implants in their brain that they can be more, that they think that they can succeed and that going down that path of criminal behavior isn't their only kind of resource that they have at their disposal. They can be better people. And a lot of my peers in and out of the academy I've introduced them to Wyler and they've kind of gotten the idea that oh wow, there's an academy that is only for black people that can help me become more than I am.

    Chidera Nome: 9:56

    A lot of my peers that were out of school I know that even in school, even when they were learning, they weren't achieving as much as they could. They were kind of swept, weren't achieving as much as they could. They were kind of swept under the rug because teachers saw them as criminals, dangerous to the classroom. They saw them as lazy, not really wanting to learn. And seeing that happen, knowing that there wasn't really much I could do about it at the time, knowing that, while it didn't even exist, because this was happening before I went, it was a sad sight to see that a lot of my peers who didn't know themselves what they could be, were kind of just stepped under the rug, sidetracked. Teachers didn't even look in their direction anymore and you're definitely, you know a success story.

    Angela Walker: 10:37

    You've gone on to secure a place, a prestigious boarding school. How much of what you learned at the academy? Um, you know how much credit do you give the academy for that?

    Chidera Nome: 10:50

    I give the academy about 99 credit because they've helped me just so much with my journey to going to this boarding school. I learned a lot of lessons at the academy and a lot of them have actually applied to the schools I'm at now. For example, I go to a predominantly white school where I can count on my 10 fingers the amount of black people in my year. So going to Wyler and then coming to an academy, going to a school like that sorry, I kind of felt out of place. I didn't really know where to be because in my house the house I'm in now, my boarding house there's only two black people and one of them's in the year below me. So I quite literally have no one that I can relate to. But after going to Wyler, after going to that school, I know that's okay now and I know that me being different and me being who I am is something that I should embrace instead of shy away from.

    Angela Walker: 11:39

    David, how does that make you feel when you hear the impact that the academy has had on Chidera and her future?

    David Okoro: 11:48

    Well, I'm really proud of Chidera, first and foremost because, like so many black young people who have potential and, yeah, who have potential but that potential isn't really nurtured in schools, and part of our role is to try and nurture that potential. What we try and do is that we try and bring out what is already within, and that's something that doesn't happen in the education system. And it's three things really. One is a knowledge of self who am I, where do I come from and where am I going. That's a foundation that every person, never mind a young person, must have and should have. And then, secondly, confidence, and you know Chidera talked about her confidence before. She's an intelligent young woman, um, but if you don't have confidence, you see, for us the way I see confidence, confidence is like a superpower and when you, when you are sure of yourself and when you believe in yourself, you can achieve amazing things. So I know Chidera says 99% of it is down to the academy. I think she's being very modest. Our role really is to get people like Chidera, young people like Chidera, to recognise their worth, to try and instil them with confidence and then get them to aim high, and then, when we do that, that's when the magic happens. And that magic is is, you know, we see that every week.

    David Okoro: 13:12

    We see all of the time young people who have been written off by school or or in education, have been written off by society in general. Um, and we see them come alive because we believe in them. And I think when you start to believe in young people, they start to believe in themselves. And I think if they are constantly bombarded with the negative stereotypes of what a black young person is, then that's when the problems start. And I know from my own experience as a young man growing up, you know I was constantly bombarded with negative stereotypes of what it meant to be a black young man and you start to believe in those stereotypes. You believe that those stereotypes that are part of you. Our job is to unburden our young people with those stereotypes and to get them to focus on how amazing they are. And our young people are amazing, and that's essentially what we try and do is get them to recognise how amazing they are and then have a plan that will help them to achieve their full potential. And that's what Jadera's done.

    Angela Walker: 14:21

    And what kind of activities do you do at the Academy then?

    David Okoro: 14:24

    Oh gosh, we do so much, um, we do lots of different things at the academy. We run lots of different programs. Um, some of the programs I mean, I can talk about what we do all day and I'm sure you haven't got time for all of it but, um, the key thing we do, as I said to you before, is we we focus confidence, self-esteem, motivation and aspirations, and we do a wide range of different activities and also one-on-one conversations as well and one-on-one mentoring. We have a really fantastic team of mostly volunteers who give up their time to come and do either group mentoring or one-on-one mentoring with our young people, and also one of the things that we do as well. We have a programme which is called Project Genius.

    David Okoro: 15:10

    And what Project Genius does? It exposes our young people to people who look like them, who are doing amazing things out there. You know, whether it's in business, whether it's in law, whether it's in business, whether it's in law, whether it's in finance, whatever it is medicine our young people have been introduced to Hollywood actors, judges, lawyers, accountants, business people, doctors, dentists who look like them and people who've walked the same streets as them and have come from similar backgrounds to them, and automatically that's the source of inspiration. Hang on a minute. You're from Halston and now you run your own business, but I'm from Halston, so why can't I do it? So, when our young people are exposed to positive images of themselves, that's a source of inspiration. If you can do it, why can can't I? And then also, what some of those people do is they act as mentors, not just role models or gold models, as some people call them. They act as mentors so they can have a conversation and say well, look, this is how I did it. These are the problems that I had to overcome. This is the plan that might be of benefit to you and that really helps to inspire and encourage and motivate young people to think big, think big and aim high. So that's one of our programmes, which is Project Genius.

    David Okoro: 16:36

    We also have our scholars programme, which Chidera is a beneficiary, and we work in partnership with boarding schools around the country and young people who come through the programme and pass all of the necessary tests and the interviews. You know they're not handed a place. Chidera wasn't handed a place. She had to be tested, she had to be interviewed, she had to compete. But our job is to make sure that Chidera has the confidence that will enable her to compete. She has everything else, but we want to make sure she has the confidence and she has the self-belief that will make her believe. I don't care if I'm only one of 10 black young people in a school where there are hundreds of other children who don't look like me. I'm not only going to come to this school, but I'm going to excel in this school. And then what happens is then Shadera becomes a role model for other young people in the academy who will say hang on, shadera was sitting next to me in that glass chair and now she's in a £40,000 a year boarding school. She will then become an inspiration to other young people, and that's what we do.

    David Okoro: 17:45

    We have a peer mentoring programme as well, so young people who have completed the programme and have gone on to university or set up their own businesses or gone into really fantastic jobs. They then come back and mentor other young people who sat where they sat a few years before. So, yeah, we have a wide variety of programmes. We have a health and fitness programme as well, which is called Fit to Lead, where we focus on health and social skills and health and social skills for our young people.

    David Okoro: 18:18

    We have a parent program which is called parent university. We have to do this in partnership with parents. It's not, you know, just send children to us for a few hours a week and everything's fine. There are also aspects of the parents life that we have to work on as well, and so that's part of our parent university and the one-on-one work that we do with parents as well, because we have parents who have been scarred by the education system and may not value it as much because of their own experiences. So we have to overcome and tackle and challenge some of the baggage that parents have in order for them to better support their children as well and, of course, all these projects, mentoring schemes and and so forth.

    Angela Walker: 19:07

    It costs a lot of money, david. Where do you get the funding from?

    David Okoro: 19:12

    well, um, the academies are not in a position to employ full-time staff, so I run a business outside of what I do for the academies. The academies don't necessarily pay us, because if that was the case, we wouldn't have academies. So we apply for funding from grants and from charitable trusts which help to maintain us. We also ask for contributions from parents as well. We do our own fundraising also and, if I'm being honest, in the early days we put money into the academies to ensure that those academies survived, and that's because we recognise how important they are. If we sat around and waited for the government or for local authorities to support us, young people like Chidera wouldn't have access to what we do. It just wouldn't happen, because in the 14 years we have ran our academies, for only two years of those 14 years that we received funding from a local authority.

    Angela Walker: 20:19

    If anyone's listening, then they can contact me if they want to make a donation to the academy and the great work that you do.

    Angela Walker: 20:27

    Now we know that there's a link between a lack of education and people going to prison, and there's a disproportionate number of young black men who are going to prison. Um, and there's a disproportionate number of young black men who are going to prison. So what can be done as a society? Obviously there's the great work that you're doing, but on a on a broader scale, because you can't help everybody. What can be done to break this cycle?

    David Okoro: 20:53

    um, yeah, that's a great question actually. And, um, I think, if we can tackle some of the socioeconomics that are the drivers for people, um, who get involved in crime. Um, so, high levels of unemployment um, I think the last statistics indicated that 40 of black young men are unemployed um, also, the numbers of young people black young people in particular, black boys in particular who were excluded from schools, the number of black families who were living in poor housing, temporary housing or homeless these are some of the issues that need to be tackled. All of this contributes towards people being involved in crime. But, if I'm being honest with you, the biggest issue for black young people is not an involvement in crime, it's a general underachievement. And that general underachievement then becomes a cycle. If you underachieve, if you're forced to live in poor social housing, if you're forced to go to a school, then you have children. Then in some cases, in many cases and lots of statistics and reports have shown this the cycle will continue unless there is intervention. Now that intervention might be at a micro stage, like what we're trying to do, but really it needs to be at a macro stage, it needs to be at a high level.

    David Okoro: 22:22

    This is government intervention on a big scale, and I remember years ago I was asked to do a report for the then Labour government that looked at underachievement in black boys. It was called the REACH report and we came up with a number of suggestions. Only one of them was taken on board, to be fair, which was about role models. But PricewaterhouseCoopers did some work for us and what they said is that the underachievements of black young people cost and this was about. This was 15-16 years ago. They said the underachievements of black young people cost about a billion pounds a year to the economy and what they said is that if we put some money in the front end, we would save hundreds of millions at the back end, and those hundreds of millions was obviously, you know, unemployment, access to mental health services, criminal justice and so on and so forth.

    David Okoro: 23:17

    If we had a range of interventions at the front end which can only be done by government, it would save hundreds of millions, hundreds of millions. But nobody is prepared to make that jump. And now we've got the perfect excuses because you know this state of the a much there isn't much money in the coffers to invest in some of that stuff. Then, unfortunately, the cycle continues and it's left to organizations like ourselves to try and impact as many people as we can at a micro level. So there's very little we can do. We can only impact the small numbers of people who we work with and we work with um at our academies on a saturday about 150 50 young people. There are thousands of young people we could work with if we were adequately supported, not only in london but around the uk as well and how many young people have you worked with in total?

    Angela Walker: 24:16

    do you think david through your academies?

    David Okoro: 24:18

    It would be thousands, because one of the things we do as well as we when we have funding, we do programmes in schools.

    David Okoro: 24:24

    So we run after schools programmes, primarily in the northwest London area, and we've worked with thousands of young people in the last 14 years.

    David Okoro: 24:36

    Sometimes that intervention is only a short one, it's not a long-term one like our academies. So it might be, for, you know, 10 sessions during the course of a term, which is great, and we've seen the positive. The teachers and the young people and the parents have told us the positive impacts that just the 10 week onehour session has had upon their children. That is a school who we work with quite closely that has demonstrated that that 10-week programme has helped those young people to achieve better GCSEs and, you know, prevented exclusions etc. Etc. So we know it works. The people who we work with know it works. But the difficult part is is it is is trying to encourage the people who hold the purse strings to invest, to really make a difference. As I say, we could, we could work with thousands of young people across across london and across the country, but unfortunately with the meager resources that we have, we can only focus on a couple of geographical areas in London.

    Angela Walker: 25:39

    It sounds like a no-brainer, doesn't it? Invest some money up front, help young people get better prospects, get better educated, keep them on the straight and narrow. They won't commit crime, they'll have great careers, they'll stay out of trouble and they'll contribute to society.

    David Okoro: 25:54

    So you guys need a big cash injection up front so you can roll out your academy to more boroughs, I guess absolutely, and you know, for me, as I said before, it's not crime is an issue, but the biggest issue is the underachievement and the impact that has upon the individual, their families and on society. So, for example, chidera will become a top doctor sometime. I think that's what you want to do, isn't it? Chidera medicine?

    David Okoro: 26:23

    yeah so sometime in the future, chidera will be a top doctor, um, and she will go on to earn lots of money. She will go on to pay lots of tax. That tax will then go into the country's coffers, which can then be invested into public services. If that didn't happen, for example, and Chidera ended up in a low paying job, then there is an investment that the country is missing out on, and then also the impact that Chidera will have upon her family, and so on, and so on, and so on, and so on. It's a ripple effect, isn't it Angela? And so on, and so on. It's a ripple effect, isn't it Angela? It's a ripple effect. So, if you have lots of chideras, if you have thousands of chideras just imagine the benefits thousands of you going out doing your good work.

    Angela Walker: 27:18

    Tell us a bit more about because I wanted to come on to that your um, your, your goals for the future. David's touched on it. You plan to be a doctor.

    Chidera Nome: 27:26

    Tell us about that, yes, um, ever since I was little, I've always wanted to be a doctor and study medicine, and recently I did declare I wanted to be an anesthesiologist. But I've also started looking into midwifery and becoming a midwife, so going down the route of medicine and becoming a medical doctor.

    Angela Walker: 27:45

    Amazing, and hopefully, as you go through your studies, you'll get a chance to catch more of a glimpse at the various aspects of medicine and kind of see what you're drawn to. Amazing, and how do you feel when you think that you're a role model to other young people and that you could help them um have opportunities and follow their heart and chase those opportunities? Because they look at you and think I can do that too.

    Chidera Nome: 28:13

    I think still hearing that term that I'm a role model is is such a excellent thing to hear I don't know how to describe it. It's just such a a big term and I still don't feel like I'm a role model. But then I go into the academy and I go around and I see people coming up to me asking oh, how did you do it? You know how school, how did you even do it? I would love to do what you do and I'm like, wow, so you're inspired by what I have done.

    Chidera Nome: 28:40

    It's just so amazing to see how I have become a role model to our young people. So knowing that my story can inspire other people is such an amazing thing to hear, because I know that there are people walking on the streets now feeling hopeless, feeling as though their life is worth nothing and feeling as though they weren't going to their own life. So knowing that my story and who I am and what I've become through Wyler and through my education, knowing who I am and how I can inspire other people, it's just so. It's so amazing. I love knowing that my story can help other people become better.

    Angela Walker: 29:19

    And you were telling me just before we started recording, that you recently went on a sailing trip organized by the academy. Tell me about that, and you know how does a sailing trip help focus you and how does it benefit you when it comes to, like you know, education and career. Talk to us about that.

    Chidera Nome: 29:40

    So the sailing trip we went on it's a residential to Isle of Wight. It's called UKSA, so UK sailing academy in east cows, I think, yes, east cows. Um, we go on residential yearly, I think ever since 2021 we've started going and I've been every year since. I absolutely love it. And one big, well, one big thing, one big lesson I've learned whilst going to these residentials is my team building skills have 100% improved. I mentioned before we started recording that we have this raft building activity that we do as a team. So you get into teams, you come up with a team name, a team song, everything, and then you build the raft, working together as a team in such you know, such close environments because we all live together, we all live in dorms. So, even working together outside of the activities, it's really helped me improve my collaboration. Going back to school after going on these residential trips, I've noticed that I find it easier to work in a team. I find it easier to voice my opinions whenever I'm working with other people. So if that's helped me, I know that it's helped other people too.

    Chidera Nome: 30:42

    There are so many different lessons that you can learn there. You can learn your confidence as well. We do water confidence at the start of every single kind of week. So on the same day that we arrive, we do water confidence. We go into the water, learn to get used to it. And it's not just water confidence, it's confidence as well having the confidence to try out new things, having the confidence to try new activities, to get to know new people, because this is a collaboration of Westside and Lewisham so you don't always know the people that you're going on these residentials with. So getting to know those people, getting to collaborate with them, after just the first day we're already acting like a family. So you know it really helps your confidence, it really builds your collaboration and I love going on the residentials.

    Angela Walker: 31:22

    That sounds brilliant. And, david, what's it like for you know, there might be some really underprivileged kids that are taking part in these sailing opportunities and residential trips and stuff. What impact do you see it have on them? Because it sounds kind of like transformational really.

    David Okoro: 31:38

    Absolutely. It's transformational and I know from my own experience. I didn't have the opportunity to do, you know, to go on some of the residentials that Chidera is talking about, and this year we had our first international residential where we took 20 young people to the Gambia for a week and that was life-changing. So it does really make a difference, especially taking people out of inner-city London to a small place like Cowes, which is completely different to Brent or to Lewisham or you know, wherever our young people live. And Shidera's right. One of the things that it does it helps to give you confidence because you're learning new skills. It also takes you out of your comfort zone as well, which is really, really important, and it challenges you. It challenges you and it also gives you a whole new, different outlook on life. When you have learned how to sail a one million pound yacht around cows and you've had to work as a team in order to do that, it just gives you a different perspective on life.

    David Okoro: 32:46

    And I remember the first time we went and some young people went into the water during the water confidence and what really struck me was a couple of them said to me sir, the water tastes salty. I said what do you mean? The water tastes salty and then. But then it kind of hit me, they'd never been to the seaside before, so they've never been into the sea. Some people would just see that as that's a normal thing that I do with my family, or that's a normal thing that I do regularly with friends, but for some of our young people that was the first time they'd gone into the sea and tasted salt water.

    David Okoro: 33:23

    For many of us that may be a small thing, but for but you know, for them that was a, that was a huge thing, that they had had an opportunity to go away. Um, and ordinarily most of our young people wouldn't be able to, or their families wouldn't be able to pay for that experience. Sailing is very expensive, it's elitist for a reason, and you need lots of money to learn how to sail. So it was great. It was great giving them that experience, because you wouldn't ordinarily get an opportunity to do that.

    Angela Walker: 33:55

    I know some private schools go to UKSA, but if you're from a state school it's highly unlikely that you will have an opportunity to go on a sailing residential to cows, which is the one of the international sailing centres of the world on one hand, it makes me feel really sad that there are a lot of young disadvantaged people who haven't even had the chance to go to the seaside and swim in the sea and, on the other hand, it fills me with hope that there's organisations out there, like your academy, that are giving young people the opportunity. But you know, we need to see more opportunities like that. How hopeful are you that we can see a brighter future for young people from disadvantaged backgrounds, from Caribbean descent? How hopeful are you, david?

    David Okoro: 34:50

    You know what I'm really hopeful in terms of. I'm fortunate enough to work with some amazing people who are dedicated to the young people who they work with. I mean, you know people who have got other jobs, have got their own families, but every Saturday they're there. They're there every Saturday and I find that really inspiring. You know they're not getting paid. They volunteer to make a difference to the lives of the young people who they are mentoring and working with. I also work with amazing other voluntary organisations in our communities who you know don't get a lot of publicity, certainly don't have a lot of money, but once again you see dedicated people who give up their time and also dedicate their money to make a difference. That fills me with hope.

    David Okoro: 35:37

    I'm not completely hopeful about the current political situation. I haven't seen or heard anything from the new government that makes me think, wow, you are really going to make a difference to the lives of young people. I just don't see that. I'm afraid and one of the things I always say to people in our community, to parents and to young people we simply can't rely on the government to support us. We have no evidence over the last 50, 60 years that any government has done so. So why do we suddenly feel in the next five to ten years there will be any difference?

    David Okoro: 36:13

    We have a government that hasn't um it's not really registered um any intention to do anything that focuses on black young people I mean young disadvantaged people anyway but black young people know. I haven't heard anything, unless I've missed something, and I did follow the campaign quite closely and I've not heard anything that would make me feel hopeful about what answers. The politicians have to make a difference at our level and working with the people who I work with. So we have to rely upon ourselves and um that that is our challenge. Anything that we get from the government in terms of support or recognition is a bonus, but we simply can't rely upon them. Um, we, we haven't had much support in the last 50, 60 years and I can't see that changing, I'm afraid.

    Angela Walker: 37:05

    There is such a gap, isn't there? I mentioned earlier, 29% of boys of Black Caribbean descent are likely to achieve a grade five or above in GCSE English and maths, compared with 47% when it comes to their white peers. That is such a gap A huge gap. It is a huge gap.

    David Okoro: 37:28

    For me, that is a national scandal. It's an absolute national scandal, because we all know what happens when young people are undereducated. We know what happens. So any responsible government or leader which should be trying to address that, because if you want to have a fair country, it has to be fair for everybody. It can't just be fair for a privileged few, it has to be fair for everybody. And if you want to increase the country's GDP, what you want is everybody to be educated and skilled. That's what does it. And but, as I say, I've not seen. I've not seen anything from our current government that makes me think, um, they've got our back, or anybody's back to, but definitely when it comes from a black community perspective well, you are doing great work, davis.

    Angela Walker: 38:21

    If anyone's listening and they want to, uh, find out more about the academy, I'll put your website link into the show notes. And Chidera, you are such an inspiration, you're such an eloquent young lady and I know that you're going to be such a success in your chosen profession, whether you go into anesthesiology or midwifery, as you were mentioning earlier and the world is your oyster and I world is your oyster and I know that you're just going to go out there and grab all these opportunities with both hands. So thank you both so much for coming on the programme. It's been a privilege to talk to you.

    David Okoro: 38:58

    Thank you, Angela.

    Angela Walker: 38:59

    Thank you. You've been listening to Angela Walker in Conversation. Don't forget to subscribe to this podcast. Please rate it and share it with others, and do check out other episodes of this human interest podcast. You can contact me through my website, angelawalkerreportscom. Until next time, take care.

  • Angela Walker: 0:06

    The parents of a boy whose death could have been prevented are campaigning for all health care professionals to be bound by law to tell the truth. Following a negligent death, ten-year-old Robbie Powell died from Addison's disease in April 1990. He'd been seen by five doctors on seven occasions in the last 15 days of his life. His family's been campaigning ever since I'm journalist, angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. Today I'm joined by Will Powell, robbie's father, and Sir Rob Behrens, who was the Parliamentary and Healthcare Ombudsman until March 2024. Thank you both for joining me. Rob, I know you've been supporting Will's campaign for several years and I want to hear about that in a moment. But first of all, I'll start with you, will. First of all, I'll start with you, will I mean? Losing a child is unimaginable, but even more so when that death could have been prevented. Can you take us back to?

    Will Powell: 1:18

    what happened when Robbie first became ill. Robert was the youngest of her three sons. He was nine years old and up until then none of the family or the children had suffered any major illnesses. Robert was admitted by Amberland St Morrison Hospital in December of 89. He was critically ill. Addison's disease was suspected. The ACTH test was ordered. However, after four days he was discharged and when we asked what was wrong we were told it was gastroenteritis. We were not informed of the suspicion of Addison's or the need for the test.

    Angela Walker: 1:58

    So it was known Addison's was a risk. A test was ordered, it wasn't carried out and ultimately that's how Robbie died.

    Will Powell: 2:07

    Yes, had the test been done he would have been diagnosed. But what the hospital did is they put the GPs on notice of the suspicion of Addison's and the need for the ACTH test and they were instructed to refer Robbie immediately back to hospital if he became unwell. He was seen, as you said, by five GPs on seven occasions in the last 15 days of his life. He couldn't walk for days before he died.

    Angela Walker: 2:35

    What were your thoughts at the time when your very sick son was being seen by multiple doctors who were dismissing your fears?

    Will Powell: 2:47

    Well, I believe that they'd looked at the medical records. When I found out later, only one GP out of the five on the seven occasions looked at the notes and he was aware and admitted on 11th April, six days before Robbie's death, that Addison's was suspected. He before Robbie's death the Addisons were suspected. He knew Robbie's life was at risk. He didn't tell us but did say he would refer Robbie immediately back to hospital and then failed to do so.

    Angela Walker: 3:14

    Rob, you were the Health Ombudsman from 2017 to 2024. At what point did you hear about what happened to Robbie Powell, did you?

    Sir Rob Behrens: 3:24

    hear about what happened to Robbie Powell. I was quite quickly informed about what had happened, first because my office had had previous undistinguished involvement in the case and secondly because Mr Powell approached me and asked to talk to me about the issue and I went to Wales to meet him and spent a day at his house talking to him and his wife and his friend Mr Herbert, to inform myself about what had happened, and I was appalled. First of all, can I just say that my office, before I joined, had done a disservice to Mr Powell by improperly treating the case and making unacceptable personal remarks about him on the notes, which is something which should never have happened and for which my predecessor apologised. But it made me determined to try and make amends as a result of that.

    Angela Walker: 4:32

    And you supported a public inquiry. That hasn't happened, has it? Why is that?

    Sir Rob Behrens: 4:39

    Well, I wrote and lobbied and talked to ministers of the former government and there were a lot of them that changed during my seven years in office. I campaigned with my Welsh counterpart, nick Bennett, and we jointly wrote to ministers. I met with ministers, I argued the case at the Select Committee on Public Administration and there was general sympathy for what had happened and a real respect for Mr Powell, but there was no enthusiasm to conduct a public inquiry, to conduct a public inquiry which would have brought a closure after so long, and that was unfortunate and wrong and unacceptable. And the arguments that we used about how much could be learned from this case. And you you know, if you just read about how it happened, mr Powell was personally traduced by doctors, by regulators, by the police service, by the Crown Prosecution Service, by politicians in a way which is just unacceptable. He was patronised and he never gave up and this, to me, is an inspiration of what you need to do in order to try and get justice in the world.

    Sir Rob Behrens: 6:18

    Now, on one or two occasions we came quite close, if not to getting an inquiry, to getting the government to accept that there should be some mechanism to set up a review of difficult historical cases which should have been reviewed, and the Select Committee on Public Administration supported us on that. But ministers were determined that that shouldn't take place because they thought that that gave too much focus on things that had happened too long ago and they wrongly assumed that there was nothing to learn from the process. And, frankly, anybody who's read the file on this and turns away and argues that nothing can be learned from it, it's simply not reading the papers rigorously enough.

    Angela Walker: 7:14

    We're talking here about the treatment of a bereaved family. We've talked about, really, what can be described as a catalogue of errors. Would you go so far to say that this was a cover-up?

    Sir Rob Behrens: 7:29

    Well, of course there were elements of cover-up throughout the whole case, both before Robbie died and after he died, and things of great concern which actually I came across as ombudsman, though not in the same concentrated way the disappearance of documents, the refusal to give a proper account of what had happened. There clearly was an unsatisfactory that's a light word set of incidents in the way that the Crown Prosecution Service took so long to look at and handle the case. And one of the things that impresses me is that, despite the disgraceful incidents that occurred after Robbie died, there were good people who came forward to make sure that this case wasn't lost. Mr Powell's friend, mr Herbert, played a good role in supporting him. The Reverend Thomas, who gave evidence that he saw that Addison's disease had been suspected by the hospital. He stood up for Mr Powell and was disgracefully introduced by the police and other authorities. And perhaps most of all and Mr Powell will tell you about this himself there was a police officer called I think Poole was the name.

    Will Powell: 9:09

    DCI Robert Poole from West Midlands Police.

    Sir Rob Behrens: 9:13

    Would you like to say a bit about what he did, because it was remarkable.

    Will Powell: 9:17

    In 1990, I complained under the NHS complaints procedure. My complaint was covered up. I appealed to the Welsh Office. I was given an appeal hearing that collapsed because of collusion between the doctors, the Welsh Office staff and the tribunal members. I had to pay £34,000 in 1992 for legal representation. The Welsh Office told me that it was a gesture of goodwill that I didn't have to pay for the doctors' legal expenses. Now at that time they were denying wrongdoing. But the parliamentary ombudsman seven years after the Welsh officer affair found them guilty of maladministration. So all my allegations that led to the collapse of the appeal in my view have been proven.

    Will Powell: 10:18

    I went to the police in 1994. I went to Dubbett Powers Police. What I didn't know was they actually retained the GPs as police surgeons, the two criminal investigations between 1994 and 2000, claiming, supported by the CPS, that there was no evidence of crimes. Yet we had given them irrefutable evidence. As a consequence of me making formal complaints against the Chief Constable of David Powers Police and the Deputy Chief Constable, they called in the late DCI Robert Poole from West Midlands. What an amazing man. Sorry, I get emotional because he'd done so much for the family. He investigated Robbie's death thoroughly. He set out 35 criminal charges. It went to the CPS in York In 2003,. It was confirmed that there was sufficient evidence to prosecute two doctors and a secretary for forgery and attempting to pervert the course of justice. But the passage of time now prevented prosecutions and David Power's police, who were found institutionally incompetent, had given the doctors, with the support of the CPS, a letter of immunity.

    Angela Walker: 11:49

    That must have been so frustrating Will.

    Will Powell: 11:52

    Well, it's been difficult. All the way through I've been shut doors. I fought them. I'll fight them till I die. If I don't get justice for Robbie, then so be it.

    Angela Walker: 12:04

    It must be so exhausting. You know to be fighting against the system in this way, and I know that you've pursued so many avenues. You know you were up against the health care system, the police. You know, rob. What does this sequence of events tell us about the mechanisms for dealing with historical wrongs, like in the case of the death of Robbie Powell?

    Sir Rob Behrens: 12:33

    Yeah, what they show is that they don't work and that there needs to be substantial reform to address things so that they never happen in the way that they did happen. So, fundamentally, we have a situation where documents disappeared, clinicians lied, no account was given to the family about what had happened and, ultimately, there was no real clarity about whether people are required to give an account of candour to families. And we're still fighting for that. So you know, as we speak, the Department of Health is reviewing the duty of candour as it currently exists in its unacceptable form, when really this should have been addressed many years ago as a result of seeing how inadequate the legislation has been. It's not to say it was wrong to introduce it after 2014, but it simply isn't powerful enough. It doesn't work. It doesn't give incentives to individuals to tell the truth about what had happened, and the penalties at the moment for not disclosing are laughable in terms of a deterrent. So you know, the duty of candor doesn't work. We don't have an effective whistleblowing system to allow people to explain what is really happening, and whistleblowers get cut off at the knees when they try to do that.

    Sir Rob Behrens: 14:15

    And thirdly and this is very relevant if you look at the way in which Mr Powell has been traduced and patronised through this long period. I mean, straight after Robbie died, when there was an initial court hearing, he was treated absolutely disgracefully for trying to ask questions which any reasonable person would ask, and we are still struggling with this issue. We're struggling with a culture which, in many respects, despite the excellence of many people in the health service and their professionalism, the culture is toxic, unacceptable and abusive to individuals, not only to patients, but to their families, and also, sadly, to people who work in the health system, who are equally produced by people in senior management and senior clinicians in a way which means that the system doesn't work properly. All of this is reflected in the experience that Mr Powell has had, and that's why I'm still convinced that there's merit in having an inquiry to look at this, because it illustrates what goes wrong, and it still goes wrong.

    Will Powell: 15:33

    May I say something here, angela, please do? In 1996, my wife and I were suing the five GPs and West Lombokan Health Authority for the negligence of Robbie and for causing his death. We were also suing them for the psychological damage they had caused us because of the cover-up and the post-death events. Now we can settle the case out of court. It was estimated at £300,000. That was £5,000 statutory payment for Robbie's death. The rest was the psychological damage caused to my wife and the psychological damage caused by me, which was post-traumatic stress disorder which meant I didn't work for 25 years. We refused to settle out of court and as a consequence the GPPs made an application to the court claiming they had no legal obligation to tell us the truth. So Mr Powell's claim cannot be made against us and in 1996 at the High Court in Cardiff the judge ruled that doctors do not have a legal obligation to tell the truth over the negligent circumstances of a child's death and I took that case to the Court of Appeal.

    Will Powell: 16:56

    Now my wife was paid £80,000 compensation and it was an admission of Robbie's death by Westle Morgan Health Authority, westle Morgan Health Authority. That £80,000 was kept by the court pending the appeal against the High Court judgment. Because the Court of Appeal supported the High Court, they took the £80,000 from Deanne, so we ended up with no compensation whatsoever. I hadn't worked for six years, I'd remortgaged my house, we'd spent £32,000 plus on legal fees. We were all bankrupt. And we choose to expose the absence of a duty of candour rather than accept money for Robbie's death, because it's never been about money. It's just been about truth and appropriate accountability never been about money.

    Angela Walker: 17:50

    It's just been about truth and appropriate accountability. How can it be that medics are not under a legal obligation to explain the causes of the death of a child if they are aware of what those causes are? That's what you're fighting for here, really isn't it Will.

    Will Powell: 18:07

    It is. But when I went to the European Court of Human Rights, it summed it up quite clearly Doctors do not have to tell parents the truth about the negligent death of their child or refrain from falsifying medical records. There's not a case in this country, angela, where there's been 35 charges against doctors and they've walked free. There's been cover-up after cover-up, and it's an embarrassment to the state that all these allegations were made 34 years ago and were ignored, and this is the biggest problem I have. But there's one thing I'd like to say the post office scandal has helped me and others immensely because it exposed exactly what we've been suffering for decades.

    Angela Walker: 18:57

    It's interesting that you mentioned the post office scandal. I did a lot of work on the infected blood scandal, you know, and people were silenced by medical professionals for years and years and still victims and their families are waiting for compensation payments. Rob, do you think, with this new government now, that there is some hope that Will and his family will get a public inquiry or that we'll see a duty of candour made law, or that?

    Sir Rob Behrens: 19:29

    we'll see a duty of candour made law. Well, I've been around long enough to know that you shouldn't put all your eggs in one basket and that new governments have good intentions which are quite often not delivered. I have some respect for the new health secretary. I believe that he's determined to address some of the issues, and there is talk and planning for legislation around the Hillsborough law which would do something not everything to address some of these issues, but there are structural issues that really do need to be addressed. You can't change the culture unless you have regulators who are themselves aware of how to behave properly and how to treat people properly, and we've seen in the last six months even that very significant regulators in the health service have been brought to task because they have failed to do their job properly in terms of looking at what's happening in hospitals and in the health service and in terms of making effective judgments about how to do things better. If you don't have effective regulation, if you don't have a joined-up system where different parts of the system talk to each other and learn from how things go wrong, then it's never going to change. And one of the frustrations that I have is that in the letters that I wrote to ministers about this issue and I wasn't Joe Public, I was a Parliamentary and Health Service Ombudsman it would take six months before I got a reply. So there was no enthusiasm to address this issue, and I hope that the new government, which does understand that there are significant issues in the health service to be addressed, will have a different attitude to the lived experience which goes on, which Mr Powell represents, along with thousands of other people.

    Sir Rob Behrens: 21:46

    I mean, we're not just talking about him.

    Sir Rob Behrens: 21:49

    There are around 11,000 avoidable deaths in the health service every year, with billions of pounds of compensation being paid to people who want to litigate because of the way in which their loved ones have been treated.

    Sir Rob Behrens: 22:07

    So there is a really big issue here and it's not going away and it does need urgent treatment. And one of the things I would just like to finish by saying is that why was the post office, why were those people so successful in bringing public attention to this? In part, it was because of the way in which they were able to bring social media and television to support their views, to make it a public case. Now, for one reason or another, through no fault of his, mr Powell has not been able to do that, to persuade television that this is something that should be looked at. And we do need to realise that it's not just public inquiries sometimes not even public inquiries at all that make changes. It's the popular view and podcasters like you and journalists like you, who do have a powerful influence to try and change things in a way that they need to be changed.

    Will Powell: 23:12

    Can.

    Will Powell: 23:13

    I come in here with a bit please, angela, because there's something really important I'd like to share with both of you.

    Will Powell: 23:19

    Recently, my Assembly member for the Welsh Assembly, a Conservative, a man called James Evans very nice man. He'd written to the Secretary of State for Wales prior to the election requesting that we have a meeting. The then Secretary of State didn't respond other than saying we'll deal with this matter after the election. Well, after the election it changed from Conservative to Labour, as you will know. So we contacted the new Labour Secretary of State for Wales, jo Stephens. She initially attempted to pass this on, because health in Wales is devolved to the National Assembly, but we argued that what happened at the Welsh office in 1992 is about the administration of that office and, because there were allegations of dishonesty and corruption, that that's a matter that should be addressed. The positive news is the Secretary of State for Wales has now agreed to meet me and I'm hoping to be accompanied by Dr Michael Powers, kc, who's been involved in Robbie's case for over 30 years and represented me at the Welsh Office Appeal.

    Angela Walker: 24:34

    I wish you every success in that meeting and I hope you get some answers and I hope you get your public inquiry, although the CPS covered up and they didn't prosecute and they investigated my complaints in 2003.

    Will Powell: 24:50

    I alleged it was a cover-up of my complaints. Well, eventually I was told that the case is closed and that they will not be responding. This is the Director of Public Prosecutions will not be responding to any further correspondence from me. That was 2003. In 2013, my former MP had an adjournment debate and, to cut a long story short, that resulted in the Director of Public Prosecutions, on the 9th of October 2014, setting up a legal review into Robbie's case. That legal review took nine years and four months. It confirmed exactly what the CPS had said in 2003, that the doctors can't be prosecuted, although there's sufficient evidence to do so because of the passage of time and the immunity letter. However, they were critical of the CPS's handling of Robbie's case and had the police, david Powys' police and the CPS not failed Robbie between 1994 and 2000. These people would have faced criminal charges.

    Angela Walker: 26:05

    So, rob, how can it be right that, because of the passage of time, people aren't held to account, especially when there's such a large passage of time, because the people that should have been held to account were stalling the process?

    Sir Rob Behrens: 26:22

    Yeah, well, I mean, it is a principle of effective administration that you shouldn't take too long to look at issues, and so most regulatory bodies will have a time limit on what they would look at issues, and so most regulatory bodies will have a time limit on what they would look at. In this case, there was a deliberate attempt to, as Mr Powell says, cover it up and to hope that it would go away, and that cannot be acceptable under any circumstances. And that cannot be acceptable under any circumstances. And it is shameful for British public administration to have a Crown Prosecution Service that takes so long to come to an effective conclusion to issues that should have been resolved much earlier. And frankly I think this is true If Mr Poole had not passed on his papers before he died, it's quite likely that this would have gone away, because Mr Powell would not have had the evidence that he was able to make his case compelling and he wouldn't have been as successful as he's been.

    Sir Rob Behrens: 27:39

    And the last point is this that Mr Powell's life has been turned upside down and his wife by what's happened. But it is to his great honour that his son will always be remembered for this case, and it is a great tribute to him that that has happened, because you know what a wonderful uh son to have had uh and but what wonderful parents the son uh had to uh to fight this long uh and so hard and so uh brilliantly. And we don't talk enough about that. And so brilliant and we don't talk enough about that.

    Angela Walker: 28:17

    Well, you've been campaigning for your son, for justice. There can't be justice but for answers for Robbie how has that affected you Well?

    Will Powell: 28:32

    it's affected your whole life. It affected my other two sons, one who's died since in 41. I believe he died of medical negligence and I won't go into that though, but we've lost him. He left four children behind him. It's devastated our lives. You're never the same in any person in a household. When a child has died, we understand fully how it affects the parents, the siblings, the general family, and it's it's the thing about. It is we all make mistakes in life and that can't be helped. But when a child dies or an adult dies and there's errors that have been made that shouldn't have been made, we should be told the truth, and I think on many occasions we would understand, possibly, why mistakes were made. But to lie, cover up and falsify records is unacceptable, and these people need to be prosecuted if that's what they try to do.

    Angela Walker: 29:36

    My heart goes out to you and your wife and your whole family and I really hope that with this podcast we can help raise a bit of awareness about what happened and I hope people watching and listening will share this podcast so we can reach more people and try and get some answers for you. Will Powell, Rob Berens, thank you both so much for joining me. Thank you both, veryens. Thank you both so much for joining me.

    Will Powell: 29:59

    Thank you both very much and thank you, Mr Berens, for giving us the time here today You've been listening to Angela Walker in Conversation.

    Angela Walker: 30:06

    Don't forget to subscribe to this podcast. Please rate it and share it with others, and do check out other episodes of this Human Interest podcast and you can contact me through my website, angelawalkerreports. Walker reports comm. Until next time, take care.

  • As racists ramp up their attacks across the country. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss underreported issues. I'm joined today by Leroy from Berkshire, who's of Caribbean heritage, and Mo K from Brighton, whose family originates in India. Thank you both so much for joining me. We've all seen the footage Racists setting fire to buildings, attacking property and people and, frankly, as a white woman, I'm ashamed to be British. How do you feel, mo, as a woman of Indian heritage, with this going on?

    Mo Kanjilal:

    0:58

    Well, when my parents emigrated to this country in 1968 and this is what we're seeing is what they lived through. They lived through worrying about bricks being thrown through the window, being spat at in the street. They used to not go out in the dark, they worried about being beaten up. It was the era when people were murdered. It was like it was horrific. And then during the 1970s and 1980s, the Asian community fought back and actually the black and Asian community very much stood together during that and they fought back against all of this. And now here we are.

    Mo Kanjilal:

    1:31

    Today we are seeing what they lived through in the streets right now, and what frustrates me about this is people say this isn't the country that we are. This isn't who we are. It is and that's what we have to accept and face is that this is British people that are doing this, that think it's totally fine that they're. You know they're riling each other up to go out on the streets and it's racist attacks. It's not being called that by the press. They're saying that there's protesters both sides when there isn't. It's very clear what's going on here. So it makes me feel angry, but also very sad, the fact that they fought back all those years ago. For nothing really.

    Angela Walker:

    2:13

    I want to talk about some of the language being used in the media shortly, but first of all, leroy, you're a dad. How is this affecting you and your family and your life?

    Leroy:

    2:27

    I mean, luckily our child is only three, so you know it's oblivious to her, but you worry about children's futures. Uh, if you're an old millennial like me, you you've had this kind of progressive period since childhood where things have every year got better and better and better. But then the last almost a decade you've been watching things progress regress really, better and better and better. But then the last almost a decade you've been watching things progress regress really and get worse and worse, and there's been lots of warning signs and people being called hysterical for pointing out the warning signs. And here we are with the inevitable and um, yeah, I'm really glad that you coined it as a racist riot, because that's exactly what it is and how everyone should think of it.

    Leroy:

    3:06

    Um, it's not comparable to things like the blm marches or, uh, the just oil mark protest or anything like that. It's a very specific type of riot that's happening and for it to be coined as patriotic or the standard of what british should be is the opposite of what the britain that we've been trying to build, you know, in the same way that our parents, like mo said, have been helping to build, um, a britain that's inclusive for everyone. Um, no, it's our responsibility as well to keep on continuing to build that and to do that and to protect the futures for our kids. We need to make a very conscious and stringent effort to protect what being British really means, and it can't be controlled. That narrative cannot be controlled and dictated by these far-right, racist rioters on the streets, putting everyone in fear.

    Angela Walker:

    3:55

    I've been quite angered. I've been a journalist for more than 20 years and when I see a banner on TV news saying pro-British protest, that makes me angry, because it's not pro-British, it's racist. And I've been trained that we see both sides of the story and we always give balance. There isn't balance to be given here. We shouldn't be given a platform to these extremists. Let's just, you know, call them racist, because that's what they are. I'm really so upset about it, and that's as a white person. These people do not represent Britain to me. Mo, you're co-creator of Watch this Space. That's a multi-award winning diversity and inclusion company. Never before has your work been more needed. I mean, did you see, like Leroy spoke about warning signs? Did you ever envisage seeing this on our streets?

    Mo Kanjilal:

    4:54

    Well, as Leroy said, all the signs have been there. So over the last 10 years we've had progressively more and more right wing politicians who use this language in parliament and on the media. They say things like that. You had a prime minister who sadly looks a lot like a lot of people in my family, which is infuriating standing on tv with a sign in front of him saying stop the vote. And you know incredibly racist language used by politicians in the house of parliament, on the media, and so it comes from there. It stems from those places that actually that in the House of Parliament, on the media, and so it comes from there. It stems from those places that actually that's the kind of language that's been used and normalized and the consequences of what we're seeing now. So it's not I mean, it's not just politicians, it's the media too.

    Mo Kanjilal:

    5:37

    If you look at headlines in some of the newspapers I'll call them that with kind of quotes around the word news, because is it really news? Because what they're doing is riling people up and then looking incredulously as people actually are taking to the streets and things that they've fuelled by the kind of language and rhetoric they've used. So you know, yes, I'm surprised to see it and how it's risen up so quickly, you know, during these last weeks, but in many ways, this has been building for a long time and I think it's been emboldened since the 2016 Brexit vote. That's when I started to experience more racism on the street, because that vote showed people that it's okay to speak out against immigration and when people speak out against immigration, they're not speaking out about white, blonde, ukrainian refugees, refugees. That isn't what they mean. What they mean is black and brown people, and it has never been more obvious than what we're seeing now you're nodding there, leroy.

    Angela Walker:

    6:33

    What would you like to add to that?

    Leroy:

    6:35

    she's right about that. You know it's frustrating when people kind of, um, uh, just look you in the face and just lie. And that's the Ukraine scenario, like the way that Ukraineraine, uh, ukraine, um kind of people fleeing their country in the war zone have been treated, is exactly how people should be treated. They, they've been treated like actual human beings, not just subhuman black and brown people, mostly from countries that we've bombed. Um, you know that I'm not remotely. I don't think anyone's really angry at all in the support that ukraine are generally, uh, feeling that people are given money to house people from ukraine. But that's just how human beings should be treated. And when anyone has the audacity to look you in the face or stand up in public and say, oh no, it's not based on race at all, it's, it's infuriating, it's gaslighting and it's quite unbelievable the audacity of it as well um mo.

    Angela Walker:

    7:30

    What does your family think? I know that you're like second generation, so you know the members of your family that did come over here as immigrants. How are they affected by what's going on right now?

    Mo Kanjilal:

    7:44

    well, so, they're now quite an elderly generation. So, to be honest, we're not in the family or really sort of talking to them too openly about this. This is painful. This is what they lived through and you know they came, you know they talked to us about this as children. They came here, you know, to give us a better life for a better world, and that's what they fought for so. So to see this happening now it's quite troubling for them. But obviously there's all of my generation, so all of my cousins, where we have every right to be here. We're born here, we're, you know, our lives are here. Yet we get people saying, go back to where you came from. You know, go home shouted at us because of our skin colour. So in the family it's really troubling because also there's then the next generation. So a lot of my cousins have got children. A lot of them are now approaching teenage years. They want to go out with their friends. You know what's going to happen to them on the streets when this is what you're seeing and it's also, as Leroy was saying, the gaslighting.

    Mo Kanjilal:

    8:38

    So I live in Brighton, a supposedly progressive city. I work in diversity and inclusion. The amount of people that have come up to me in the time, since I said I was doing that, to say, oh, what are you talking about? It's a load of nonsense. Oh, you know, aren't we over all of that now? You know, that's the sort of thing that shows you how far we have to come. And it's interesting, since I've been posting more about it on LinkedIn, where I'm connected to people I used to work with, you know, maybe 10 years ago. I've noticed people. I noticed one person particularly that I always was worried about, looked in my profile and unfollowed me. I've now blocked him, um, and it just shows you that it was always there. It's just people now feel like it's totally out there.

    Leroy:

    9:16

    They can openly say these things, and that's what's worrying um, and so I just just coming back to you, mentioning about Brexit as well, lots of people were warning heavily about Brexit. The reality is that we don't really trust to be honest, we don't really trust our government enough to protect us, and that was the fear that as soon as the reins were taken off by leaving in Brexit, we'd have these sort of issues again. And people were said no, you're just being extreme, have these fears. When Brexit happened, it was the first time I had a sinking feeling in my stomach the day of the result, because I just knew. I knew this was the direction we were going to go and I just knew it.

    Leroy:

    10:00

    Ultimately, it was the person, the people who were, almost, if you ignore everything what brexit was about, just look at who wanted it and you might say people who are far, far left wanted it and people who are far right wanted it, and politics is a circle, they all meet in the middle.

    Leroy:

    10:18

    At that point, and when you and that was a warning sign enough for me, and the fact nigel farage, who is a traditional racist, to be a director of you, um, the fact that he wantsage, who is a traditional racist, to be direct with you, the fact that he wants it so much for me alarm bell. You probably shouldn't want that, and everyone that supported it held his ideas and his beliefs, so I knew it wasn't going to be in my interest or in the interest of the kind of Britain that I want to see. And we've been on that. You could say we've been on that trajectory since since david cameron decided to take up that bet with nigel farad, um. But we have been on on that negative trajectory since then, um, and we're hoping that we can get off this ride or we can change the direction. Ultimately, like the stock market, cultures go up and down, but I really hope we've near to rock bottom at the moment well, we've got more than 100.

    Angela Walker:

    11:06

    I'm going to call them events, but far right, protests are planned across the uk tonight and of course, it spreads like wildfire because it's spreading through social media and it's being spread through a lot of accounts which are being traced to other countries, because there are other countries, like r, for example, where it's in their interest to see unrest, to see our democracy undermined. You know, what can we do about this spreading of this misinformation? It is misinformation because it's like. You know, the spark was the terrible murder of those children in Southport. They weren't killed by an Islamic immigrant, but that was the catalyst, wasn't it? And it's like misinformation. I mean, how can we compete against that?

    Mo Kanjilal:

    12:02

    So it's interesting. I have a love-hate relationship with social media. Amazing things happen through social media, the connections you can make. We've all met each other through social media. A lot of things with our business has been up that way. We launched it in lockdown, so a lot of things. Thugs coming to Brighton. There are also several counter protests arranged, so there's lots of different groups that are doing that.

    Mo Kanjilal:

    12:32

    But there's like my phone has been going just pinging all day because of all the misinformation, even since yesterday. Some people yesterday were saying they're already here today and it's like they weren't, and so there's all of this misinformation flying around all over the place. I've also got cousins in India, so I have a whats. I've also got cousins in India. I have a WhatsApp group with my cousins in India. I haven't seen a lot of them for years.

    Mo Kanjilal:

    12:52

    The misinformation that's being spread in India as well about this, the kinds of things that are being all over the news over there. It's just whipping up all of this frenzy around it and a lot of misinformation, and it just makes me wonder whose interest is this in? Who's fueling all this? And was it actually anything to do with those poor girls and their families? You know what they're going through. Seeing all of this happening. Was it actually anything to do with that? Or was this just something that was waiting for an excuse for all of this stuff to be, um, emboldened and kind of spread like that? That's what it makes me wonder about. I know it sounds very conspiracy serious, but you know it feels like it's in a lot of other countries interest for there to be this kind of division in the UK. And you mentioned Nigel Farage. You know what is he actually involved in? Who funds him? Who funds what's his name? Tommy Robinson. You know what's actually going on here.

    Angela Walker:

    13:43

    That's what it makes me think about what I think is interesting and there was this catalyst of this devastating child murders is that it's all happened within a couple of weeks of the new labour government, who seemed to be like more progressive. Why is it that has happened now and when? There were other events like previous which could have been a catalyst, but it's just this particular moment in time. It's almost like it's undermining the, the new government, and you wonder why that the timing has been now and it's just spread like this series of coordinated attacks. Really, um, leroy, what do you think can be done now? How can we take control of this situation?

    Leroy:

    14:29

    I think kia starman's got a very difficult job ahead of him at the moment. Um, and there has to be accountability, uh, both in the media and especially social media, and I think what happens every time something happens with misinformation there's a meeting with the heads of Facebook and Twitter and everything else, and from the response of Elon Musk recently, we've seen that they don't care at all.

    Angela Walker:

    14:56

    Elon Musk just said the UK is verging on civil war. I mean he's wading in to suggest that we're on the edge of a war?

    Mo Kanjilal:

    15:05

    And people have been leaving Twitter whatever you call it, like today, more than I've ever seen Everyone's saying they're leaving it.

    Leroy:

    15:12

    And it's been happening for last year. People have not been buying Teslas because of his opinions on social media. He again is an old-school scientific racist is what Elon Musk is from his own comments. But, yeah, there has to be accountability and I think actually Keir Starmer needs to move very, very quickly. Because of the power of social media and people like Elon Musk who just don't care, there has to be very strong punishments that are swift and Keir Starmer's rightly or wrongly he's often known for being very swift and quite ruthless, so we need to see some of that ruthlessness now with the actions that he makes. I don't quite think it's probably quite right to ban Twitter and things like this. People should choose if they want to be on there or not but there does need to be some serious restrictions and punishments for allowing this misinformation to happen, because this has been the most extreme case and the swiftest case of very obvious misinformation having a tangible effect on the country in which we live in.

    Angela Walker:

    16:14

    And you know, I think we have to talk about accountability, because if you print misinformation, you can, you know, potentially go to prison for it. So we have to be able to hold people to account and say that anything that you publish on social media should be treated the same, I personally think, as if you print it in a newspaper. Maybe that's the way to go, but of course it's policing. It is the real challenge. There's talk tonight of vigilantes going out to protect their places of worship. They've caught wind. Their mosque could come under attack. So groups of young men are going out and they want to protect their places of worship, their special buildings and and so on. I don't know, is that the right way to go? I mean, are they putting themselves in harm's way? I just, it's secondary, isn't it mo?

    Mo Kanjilal:

    17:16

    yeah, so I live quite near um a mosque and I know that, like I said, there's always counter protests tonight in brighton. Um, it makes me feel uh worried for those people because, though the thugs are looking for that, they're looking for trouble and like, what are people going to get caught up in? But equally, I understand that they want to protect. You know, they want to defend themselves. So it's a really difficult thing. I've had, you know, I could say, people tonight in in this city, some, you know, there's loads of people that want to go and fight back and show that we're fighting back, but then what you're getting yourself involved in if that happens, um, and I also think, going back to the point of what to do, I think I do agree, I think kia soma needs to.

    Mo Kanjilal:

    17:55

    This is this cannot wait, like this needs action right now. It needs politicians pulling together and condemning this as racism, which I haven't seen like a stronger response from that from all around, and they need to decide, like, what they're going to do. So a while ago, not that long ago, the just off world press protesters got really long sentence, you know, is the same thing happening here? Is it proportionate? What's great? Because if it's not, then we need to call that out for what it is. So it's about the policing and the law and order as well, and there needs to be a grip taken on this incredibly quickly. I don't know what's going on today, but I hope they're on it and they're going to do something about this and try and take control of it.

    Angela Walker:

    18:34

    Yeah, I think it was five years in jail, wasn't it for the Just Stop Oil protesters. So we'll be interested to see. I think they are whizzing people through the courts. People who've been involved in the riots are getting through the court system Like they've sped that up, so it'll be interesting to see what kind of sentences those people get. Leroy, is there anything else that you'd like to add to the conversation?

    Leroy:

    19:02

    Just going back to what Mo was saying and what you were saying about people fighting back on the streets and taking it back into their own hands. Fighting back on the streets, everyone knows we should just leave the police to do that kind of thing. People are not Batman. The police should be allowed to take care of those issues. Whether or not they feel there are enough police and the police are acting quick enough and we see they're all stretched is one thing as well. And you see shops being burnt down. And saw a guy on tv in belfast today just stood there who just said he didn't care. He didn't care that the guy across the street had his as his shop burnt down because he's muslim, because he's brown, and he had. And the guy was saying how can you not care? He's literally your neighbor, so I just don't care about it, I don't want him here, I want him out. He said it's like nazi germany is what it's like on the streets at the moment.

    Leroy:

    19:47

    And also we're having a a traumatic reaction here, which is why all of our phones are ringing, because if you grew up in the 80s or 90s and your parents grew up in the 50s and 60s and 70s, they have this trauma of these memories. They've passed it on to you through telling you the issues. You may have had the experience yourself in the 80s and 90s or 2000s. And now it's happening again and I hadn't even realized how traumatic emotionally this would be for me and my phone, just like Mo's, my phone, is rung non-stop all weekend with people telling me stories of when they were beating up by racists before, when their parents were harassed, and it is a really traumatizing thing that's happening here and, on top of it, being traumatizing and making you want to fight.

    Leroy:

    20:29

    I think there was a note that there's a feeling that in some communities they, when they used to get harassed by the national front uh, combat 18 that their parents weren't fighting back enough. They were just let's keep our heads down, let's just not say anything. And now people were like no, I'm not gonna. We are gonna fight back. This is my country as much as anyone else is. I'm gonna fight back and I think, unfortunately, some people get in trouble doing that um. But that is that ongoing trauma that's happening and that we kind of feel um from those past experiences.

    Angela Walker:

    20:57

    Mo, would you like to add anything to that?

    Mo Kanjilal:

    21:00

    Um, just to add that, uh, if anyone's listening to this and they are going to fight back, please be careful. Because we've already talked about the police. I'll be totally open with you. There's a lot of mistrust of the police as well, and a lot of black and brown communities. So, you know, who can we really trust? This is, you know, this is a real crisis in our society and it is difficult to know who to trust when it comes to these things. So I'd just say to anyone that is going to go to any of these counter protests to be really, really careful of these counter protests. To be really, really careful and that's what I've been saying to people I know that are going through is like stick together, be really careful, get out there as soon as you feel like it's unsafe yeah, because you've seen already, pete, I think I saw a muslim guy have a weapon already be sent down.

    Leroy:

    21:44

    Um, so it doesn't matter what you're there for, you shouldn't be carrying a weapon. Um, having this kind of hero feeling don't, don't go out and do that, stay at home. Um. And the other thing is about. You know, this is knocking everyone's self-identity um at the moment, whether it's your identity as a white person, feeling you're being betrayed by white people who are damaging the image of you as a white person, or whether you're a black and brown person who's been repeatedly told to go home and that, what's it? If a dog is born in a barn, it doesn't make it a horse. That kind of nonsense, like you know, it's constantly attacking your identity. You have to be really stubborn about what your vision of being British is and don't let someone else control the narrative of that when they don't share your, your view of what what Britain should look like. You've to be really stubborn and hold on to your identity uh, do you know what makes it's really hard?

    Angela Walker:

    22:34

    like, obviously I'm a white woman, but when I see this behavior it makes me ashamed, but it but what's frightening is that we've got these people in our midst and I feel like I didn't even know that there was this horrible underbelly of thugs and racists just bubbling away, waiting for the opportunity to come out of the shadows and behave like this. I'm shocked, actually. I'm really shocked by it, because I've got the luxury, really, of being a white woman who's never faced racism, you know, and so I. I feel like I've, um, I've lived with my head in the sand all these years and to see what this behavior is like, it's really shocked me actually. It hasn't shocked me.

    Mo Kanjilal:

    23:27

    It we knew. We knew these people were there. That's. That's probably one of the most infuriating responses. Sorry that I'm seeing is we didn't know, but it's been in front of us. We do know. I saw somebody post on my linkedin post actually saying the thing is, those same people are now just going back to work. They're in our offices, they're in our you know public services, they're just around us. That's the reality. It's just that people are feeling emboldened to behave like that and speak out like that.

    Leroy:

    23:53

    But the if you look at the amount of people that they're here the the thing with british racism because it is, as angela was saying, kind of hidden a bit.

    Leroy:

    24:03

    No one, no one ever says yes, I'm a racist it's very rare someone ever says that. But when you're applying for a job or when you're not given the benefit of the doubt, these are people who have racist ideas, but they're not being out about it and it makes you feel paranoid and you tell other people about it and they're like oh no, don't worry about it, it's probably not that and you know it's that, you've had enough experience of it. Um, so it might even be beneficial in a way that so many it turns out like child carers and uh, counselors and this sort of thing are being sent to prison for this kind of interaction, because we're actually filtering through and getting rid of a lot of them out of society. So the more people that go out and get arrested rioting or online spreading hate, the better. In a way, as long as we respond to it positively, it can actually be a beneficial thing for all of us.

    Angela Walker:

    24:50

    Well, thank you both so much for coming on and talking to me today and, you know, just stay safe. Thank you, thank you.

  • Angela Walker:

    0:03

    The impending general election could mean more misery and further delays in compensation to victims of the infected blood scandal in the UK. It was not an accident. It involved downright deception and left people exposed to unacceptable risks. Those were the damning words of the Infected Blood Inquiry's final report on May the 20th, into the scandal which saw 30,000 people infected with HIV, hepatitis and other diseases from contaminated blood products given to them by the NHS. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss underreported issues. My guest today is barrister Clive Smith, who's the Chair of the Trustees of the Haemophilia Society. Thanks for joining me, clive. I know you've got severe haemophilia and I'd like to ask you how this has touched your life on a personal level. But first of all, sir Brian Langstar's report could hardly have been more scathing. What were your initial thoughts? Could hardly have been more scathing.

    Clive Smith:

    1:05

    What were your initial thoughts? My initial thoughts were that it went further than I think many people could have even hoped for. So when we heard evidence at the public inquiry, for example, about when we first licensed blood products to be imported from the US back in 1973, for example, there was then evidence later on about people with mild hemophilia or moderate hemophilia who perhaps sometimes only ever had one injection but sadly then became infected either with HIV or hepatitis C or sometimes both, and so I know in other inquiries there have been shades of grey about people's infection. So, for example, if you compare Ireland from January 1985, for people who are infected with HIV from then onwards they received larger compensation payments because the chair of that inquiry felt that the state of knowledge at the time meant that the reality of people being infected from then onwards was something that should never have happened. It was almost entirely preventable by that stage.

    Clive Smith:

    2:06

    But instead of getting into detail like that, sir Brian was just so clinical and forthright in his conclusions and he said that in 1973, the decision to license those products was wrong, and so we never got into the discussion. Really we can if you read a bit more of the report, but there was almost no need for the rest of that discussion in terms of whether people should have been treated with this or not or whether they could have been treated with something else. He just said the decision to import those products and license them in 1973 was wrong. And of course, he then went on to say that much of this could and should have been avoided, because he said more money should have been invested in heat treatment, which meant by the late 1970s, hepatitis C really should have been being killed in terms of blood products, and then, completely inadvertently, you would have actually found a system that would have killed HIV to the point of almost extinction, so that very few, if any, people ever would have been infected with HIV. And I think those conclusions are so compelling and clear that, as I say, I think even the community were shocked and stunned about how far he went in terms of saying when this could have been prevented. So for many, though, because of course he then went on to say that much of this could and should have been prevented and I was there on Monday, the 20th, when the report was published, and for some people it was just too difficult to read to know that this could have been prevented and their loved ones weren't there with them, sat next to them, was just too hard.

    Clive Smith:

    3:35

    So a bittersweet day really for many, because it's what so many people never dared to dream. And just having the report in your hand I've got it here and it's, it's so strong, it's so compelling. Um, seven, seven volumes, um, certainly not got through all of them yet, but, um, I will. Um, and it really was a day that nobody really dared to dream happening. And, and it did, and it has, and it's um, it's still sinking in, certainly for me and I think, for many other people too.

    Angela Walker:

    4:04

    I think one of the things that's so shocking is yes, mistakes were made, but along the line, many, many medical people, professionals, were involved in covering up mistakes, covering up the fact that they knew people had HIV and that people were still being infected. I mean, what's your stance on that?

    Clive Smith:

    4:27

    It is just appalling and I think for so many years people have been dismissed as conspiracy theorists because actually when you tell people about this, their jaw hits the ground and they think, well, surely that can't happen in a Western, civilised democracy? And sadly it can and it has. I think one of the things that struck me when I was at the inquiry um one day is that so brian has taken aim at, you know, government civil servants at pharmaceutical companies, at medical professionals and others, and it just feels like every layer and level of protection that was there for patients and for people failed, and it failed in the most horrendous way, as you say. And not only that, but it was compounded then by the cover up. And, as you know, one of the terms of reference for Sir Brian in his inquiry was whether or not there had been a cover up. And he said far from there being a cover up, actually he said there was a deliberate attempt to conceal this. Far from there being a cover-up, actually he said there was a deliberate attempt to conceal this, a conspiracy. And his words about the conspiracy are really poignant if you read that aspect of the summary.

    Clive Smith:

    5:34

    But you know it's a more insidious way in which this had all been covered up, by medical records being destroyed, by people like Lord Owen when he was health secretary, by his papers no longer existing, all these sorts of things. It wasn't a group of people who sat down and decided to do this, it was pockets of people who took these decisions and that's really difficult to hear. If you think of doctors and the Hippocratic Oath and their first duty first, do no harm and surely your second duty first do no harm. And second, if you do do harm, don't cover it up and try and remedy it and rectify it. But that's what happens. This godlike behaviour by some health care professionals is absolutely chilling and has been thoroughly exposed by this report.

    Angela Walker:

    6:19

    I mean as patients, as members of the public, we put our trust and faith in the medical professionals that are supposed to be looking after us. This has been catastrophic. Where does this leave us regarding our relationship with the NHS, with our health professionals?

    Clive Smith:

    6:37

    I think it's really difficult because I think in this country, you know, we venerate the NHS and I think it was Nigel Lawson talked about it being the closest thing we have to a religion and many, many people who work in the NHS do a phenomenal and fantastic job. But I don't think we should ever just rest on our laurels and think we have a perfect system. I think it has. For many people with haemophilia and, of course, others who were infected through blood transfusions as a result of childbirth or surgery or going into a and e, for example, it has completely shattered their trust in health care professionals. But not only that, but in the state, in society. As you say, when you go into hospital, you go in because you're vulnerable and you put your trust in somebody to look after you at your most vulnerable moment. You know when you're giving and you put your trust in somebody to look after you at your most vulnerable moment. You know when you're giving birth to your child, for example, or when you have been involved in a major car accident or when you've got a severe bleeding disorder, and you're going in and you're putting your, putting your life in their hands and you don't expect to walk out of there worse off than when you went in. Not only that, you, you don't expect it, as you say, to be covered up.

    Clive Smith:

    7:51

    I think times have moved on, but I think we're a far way, a long way, from the relationship between patients and healthcare professionals being perfect. And one of the themes I think there were six themes in Sir Brian's report One of them was the patient voice and the fact that that was completely, you know, subjugated and it was not even second best. At times it was third or fourth, and others were listened to. So you know, when healthcare professionals did this, then it was civil servants and ministers who were fed lines about receiving the best possible treatment based on the best medical advice, and the patient voice was just relegated to the bottom. And so there needs to be a rebalancing of that, and it's welcome that in Sir Brian's report, one of his recommendations is about training of health care professionals, and you know the BMA, for example, the British Medical Association, the training of doctors, and I think what I and many others would like to see is people who have been victims of this scandal actually being involved in the education of health care professionals.

    Clive Smith:

    8:41

    I think one of the really important things about the contaminated blood scandal is that it didn't just happen here. This is a worldwide issue. Places like America and Canada and Ireland had their inquiries many, many years ago and dealt with this problem. We haven't had these decades of burning injustice that we have had in the United Kingdom. So we need to be educating healthcare professionals during the educational phase of their training. It's almost too late, I think, once they get into hospitals or GP practices and they get into the institution itself, because there is a risk there's a risk for everyone working in certain jobs, but of people becoming institutionalized, and so you need to get to them early, I think, and have that education piece, because I think that's the only way that the patient voice is going to be promoted and patient safety is going to be everybody's primary concern when treating people.

    Angela Walker:

    9:29

    And it's so interesting, clive, that you're talking about this kind of like way that people get swept along with the culture of the institution that they're working for, and we were chatting earlier about a man who was positive for HIV and his GP covered that up. Tell us a bit more about that, because he didn't even tell the patient that he had HIV.

    Clive Smith:

    9:57

    No, we had a member a few years ago who was in the press and he was telling his story about the fact that he was infected with HIV when he was a patient at Birmingham and his doctor had been testing him without his knowledge and found out he was HIV positive and then didn't reveal his HIV status to him. That patient then moved from Birmingham to Leicester and when he moved, his consultant wrote to his new consultant in Leicester and asked him not to share that diagnosis with him. And the doctor in Leicester agreed not to share his diagnosis. And some years later the patient then moved from Leicester to Stafford, I think from memory, and when he got to Stafford that letter didn't go from the Leicester consultant saying please don't tell him. And when he got there he was literally told in the doorway, as he was walking into his first appointment, his doctor hello, I see your HIV positive. Then you've probably only got a few years left to live. And that was the start of his relationship with his healthcare professional, with his doctor.

    Clive Smith:

    10:46

    And when you have a condition like haemophilia or indeed any other lifelong condition, those relationships are really important your doctors, your nurses, your physiotherapists, all those sorts of people. They become part of your family. You know them by first name, you can pick up the phone often and speak to them directly. You know there's no need sometimes to go through reception and they really do become part of the family. The reason I am chair of the board of trustees is because my former hemophilia nurse at Great Ormond Street encouraged me to apply to become a trustee. So you know, it's over 20 years since I left Great Ormond Street but I'm still in touch with my nurse.

    Clive Smith:

    11:20

    So those are the kinds of relationships that people have when you have lifelong conditions, and so for that trust to be shattered and destroyed is really damaging to people's long-term health.

    Clive Smith:

    11:32

    Because I've spoken to people who don't like going into hospital and not just hospital generally, but specifically the hospital where they receive their diagnosis and I remember speaking to my doctor recently and she said to me that as healthcare professionals, they often think of it as just a hospital.

    Clive Smith:

    11:47

    But it's not. It's the place where people receive their diagnosis and that can be incredibly triggering for people. So when they do have issues with their haemophilia, they don't go to hospital, they don't access their healthcare. They end up staying at home and resting and having internal bleeds and having further damage to their joints and all those sorts of things, and then they become depressed and that affects their relationships with their partners, with their family, with their children, with their job, all those sorts of things. The generational harm that this has caused cannot be underestimated. We think of this as something is happening in the 70s and 80s and it was that's, the initial uh ripples of this earthquake were felt, but it continues to to shatter and destroy people's lives today, sadly of course, and people are still dying all the time, and many people are dying and they haven't received any compensation.

    Angela Walker:

    12:38

    Their families haven't received a penny um, and we talk about compensation. It's not just. It's not just because they were wronged. These people were unable to buy houses, they were unable to have hold down jobs because of their illnesses that they received because of these contaminated blood products. Now I know in february last year, so brian langstaff recommended compensation be paid, and quickly, and and yet there's still been more delays. Let's talk about the compensation side of it then.

    Clive Smith:

    13:08

    Yeah, as you say, it's about two years ago now Sir Robert Francis, who was the chair of the public inquiry into the mid-staffs there were a number of excess deaths in mid-staffs and he chaired that inquiry and he was the person who first came up with recommending a duty of candour for healthcare professionals, and we can perhaps talk about that a bit later. He submitted that report to government and to the inquiry, gave evidence to the inquiry and then in April last year Sir Brian Lang's staff published an interim report on compensation. He said I couldn't in all conscience wait any further because I know people continue to die and just having that peace of mind of being able to go to their graves knowing that their loved ones and their family members will be looked after is hugely significant. And so he published that interim report and said to the government get on with it. They didn't, they still haven't and that should have been up and running by the end of last year.

    Clive Smith:

    13:58

    The government said two things. Firstly, they said they would publish their own response to the Sir Robert Francis report. They've still never done that. Published their own response to the Sir Robert Francis report They've still never done that. Secondly, what they said is that they couldn't respond to Sir Brian's interim recommendation until they received his full report On the 20th of May this year. We received Sir Brian's full report On the 21st of May. The government published their response in terms of their proposals for compensation. Quite how they managed to do that overnight, I don't know. I'm being cynical, of course, because the reality is they didn't need that report. They could have done it, they could have got on with it, and it didn't happen, which is appalling.

    Clive Smith:

    14:35

    And actually, as a result of that, sir Brian Langstaff has done something which I think is unprecedented in a public inquiry, because one of his terms of reference is the timeliness of government response, and the timeliness of the government response to his recommendation on compensation is still something which he is actively considering.

    Clive Smith:

    14:52

    So whilst he said, well, here's my final report, he's not closed the book or closed the final chapter on this inquiry, and he said in 12 months time. He said I want a response from government saying how you are taking forward my recommendations or why you are not taking forward those recommendations. So what he's very gently saying to the government is exactly the same as what the community has been saying for decades, which is we don't believe you and we don't trust you, and Sir Brian Langstaff has said the same, which I think is incredibly damning for the chair of a public inquiry to say to government I don't trust you and as a result of that, I'm not going to close the book on this inquiry yet. You need to sort this out. You can't keep having public inquiry after public inquiry where reports sit on shelves in Whitehall and gather dust and we don't learn the lessons from the past. This cycle has to stop and it has to be broken now.

    Angela Walker:

    15:41

    But of course, in 12 months' time we're going to have a completely different government, because was it the day after the report was out, rishi Sunak announced that there was to be a general election in July. So what effect is this going to have on the compensation scheme for the infected blood victims and their families?

    Clive Smith:

    16:03

    It was quite the week, so over five days. On the Monday we had the inquiry report published. On the Tuesday we had the government's proposals on compensation published. On Wednesday we had a general election called and then on the Friday the Victims and Prisoners Bill became law and received royal assent, and One of those in a month would have been enough to deal with and digest. But to try and digest all of that in the space of five days has been ridiculous, quite frankly. We counseled the government about making any major announcements around the inquiry being the report, final report being published, because we knew how emotional and how exhausting it would be for the community and we as a charity.

    Clive Smith:

    16:50

    We have a webinar tonight and it was supposed to be about the findings of the inquiry and to discuss the report. But it's going to be about compensation, because that's all people want to talk about at the moment because they've been waiting so long for it, and you said earlier that when we talked about compensation, that it's important. Of course the money is significant for many, many people, but the other aspect of compensation for me, I think, which many people feel, is that it's about recognition, and recognition in this scandal, I think, is more significant than in many others Because, as you know, the stigma that so many people have faced, particularly with HIV but with hepatitis C2, and many of the other viruses, we all remember, or many of us remember, the Tombstone campaign in the 80s Don't Die of Ignorance and people having their houses dogged with graffiti. And many people have heard the story of Colin Smith, who was seven years old in South Wales when he died, and his parents having had their house dogged with graffiti. Aids family or AIDS victims, and the compensation is recognition of the harm and the wrong that was done to them. Their compensation is recognition of the harm and the wrong that was done to them.

    Clive Smith:

    17:47

    But in terms of, as you say, in terms of the announcement of the general election, initially that the fear was and I was actually in Parliament on Wednesday when the general election was announced and the fear was that the Victims and Prisoners Bill wouldn't be included in what's known as the wash up. So when Parliament is then dissolved and we enter the period of purdah, there's a very short window of opportunity for all the bills that are before Parliament to be passed into law and of course, there's not enough time for all of them to pass and we were initially very fearful that the Victims and Prisons Bill wasn't going to pass and that has thankfully passed. So in the short term, the calling of the general election has actually sped things up. The question is, as you all appreciate and everyone else listening will, is what goes on in the background. Of course, the civil servants will continue to work on this. Sir Robert Francis has now been named as the chair of the Infected Blood Compensation Authority. The Infected Blood Compensation Authority has now formally been set up under the Victims and Prisons Bill, which is why I've been mentioning it, and many other things now have to happen. Within three months, regulations need to be placed before Parliament. So in the short term, it's sped some things up.

    Clive Smith:

    19:00

    In the medium term, I suppose we don't know what the change if there is, of course can't predict what may or may not happen at a general election, but if there is to be a change in administration, then time will tell as to how quickly things move, I think from our own position, just commenting on where we are. So one of the things that's happened obviously in the last few years is many people will be familiar with the name Sue Gray. She was the former senior civil servant who was actually in charge of the government response to the infected blood inquiry. She obviously chaired the inquiry into the Downing Street parties and Boris Johnson, etc. Following which she left the civil service and is now, of course, sir Keir Starmer's chief of staff, and I've had meetings with uh, we've discussed this um, because that's been another challenge in all of this, because, with a general election coming up where there is potentially, um a change of administration, we've all effectively had to ride two horses in one race. So instead of focusing our energies on the government, we've had to focus our energies on the government and um, the opposition party, um, which has added another dimension to all of this. And if there is a change of administration, then Sakhir Starmer has said we will get this done.

    Clive Smith:

    20:13

    It was heartening on Monday, the 20th so, when the inquiry report was published, a number of people were invited to the speaker's gallery to hear the Prime Minister's apology and I was privileged to be one of those people and, as well as the Prime Minister standing up and apologising, sir Keir Starmer stood up, sir David stood up and they all apologised and there was a rare moment of political unity in the Commons. There was a rare hushed silence as well, which, considering how close we are to a general election, is something you very rarely see. There was actually quite a large dose of humility on show, which was very welcome, because it's the first time we've really seen all of that. So, in terms of the impact of the general election, initially it's actually sped things up. We'll have to wait and see in the medium term where we go, but it's just added another level of complexity.

    Clive Smith:

    21:07

    I know I said to you before, angie. I think it's worth repeating if somebody said at a meeting I was at last wednesday, that just as you get to the top of the mountain and the mist clears, then you realize that there's another mountain in front of you. You still have to climb so frustrating, so frustrating.

    Angela Walker:

    21:20

    and while we're talking about politics, I mean it's worth mentioning that, you know, governments of all colours have failed to get to the bottom of a fail to even allow an inquiry until Theresa May. Now, who should be held to account politically? Because we've talked about, you know, medics, people in the NHS, who who failed patients, but there was a huge political failure as well. So who should be held to account for this cover up?

    Clive Smith:

    21:53

    It's difficult to pin the tail of responsibility on any particular donkey, isn't it? And we have to be careful. I have to be careful as the chair of a charity about what I say at the moment, obviously during an election period. But you're right in the sense that, no, I don't think any political party comes out of this with much credit. It was Lord Owen, when he was self-secretary in the late 1970s, who said that the United Kingdom should become self-sufficient in the production of its own blood products, and that obviously didn't happen under the Tory government afterwards.

    Clive Smith:

    22:23

    We then, of course, had a change of government in the late 90s, and we were denied repeatedly again then a public inquiry by successive Labour prime ministers too. I think we've had something like 12 prime ministers and 23 health secretaries since this all kicked off. So I'll let our listeners decide who might be most or least to blame in all of that, but the reality is that they should all shoulder some degree of blame, and I said in the week that the inquiry reported it was quite refreshing to hear Jeremy Hunt because of course he's currently the Chancellor and a former Health Secretary himself talked about his failures during his time in office as Health Secretary. Andy Burnham has gone on record to talk about the fact that he was counselled actively counselled by civil servants not to meet victims of this. Jeremy Hunt talked about this really powerfully in his evidence. He talked about the case of Nazanin Zaghari Radcliffe and the fact that he was actively counselled by civil servants not to meet her husband and of course he did and we all know how that ended happily with her release eventually. But there were all those levels of barrier within our political system that civil servants were counselling politicians and ministers not to meet with victims.

    Clive Smith:

    23:35

    And there was Sir Brian called it a lack of curiosity, a lack of professional curiosity by ministers that when they were told things they simply swallowed it and they accepted it. I think to give politicians some not credit credit's the wrong word, but I think in today's day and age it's far easier to access information and get things out there, particularly with things like Twitter and X and the fact you can just go online and Google things. So if somebody tells you something, you can actually go and fact check it. I suppose is the phrase we'd use today, rather than simply being told well, your civil servants have gone away, this is the homework and research they've done and this is the position and many ministers happen to be able to say well, ok, I can't really go anywhere else with that, but, as Sir Brian said, there was a complete lack of curiosity and people like Lord Clark, lord Kenneth Clark, when he gave evidence, his evidence over three days was patronizing at best and offensive at worst.

    Clive Smith:

    24:33

    And at the end of his evidence he said that he didn't even know what the treatment today for haemophilia was, and of course, for most people it's an injection into a vein. But he said well, what do you just take? A tablet, is that it? And it was so condescending and patronizing. What was abundantly clear to everybody is that Lord Clark had never met a single victim of the contaminated blood scandal in his life and, as a former health secretary who was in office during the early 1980s, that is a damning indictment. There is this barrier between politicians and people, the people who are there to represent and they're there to look after and they're to protect, and that barrier has to be broken down Again, going back to the patient voice or just the citizen's voice being heard by the corridors of power and actually them learning the truth from them, rather than what they're told by civil servants, what they're told by civil servants.

    Angela Walker:

    25:24

    I was going to ask you about Ken Clarke because when I saw him giving evidence, I was absolutely dumbfounded by the way that he was just so dismissive of the whole scandal, to be honest, the way that he spoke. You were there at the time. I mean, what were your initial feelings? Because it was so shocking, so shocking.

    Clive Smith:

    25:47

    It was, and I think Sir Brian described him as combative.

    Angela Walker:

    25:51

    Well, that's very kind.

    Clive Smith:

    25:54

    Well, quite, that's a polite way for a high court judge or former high court judge to describe his conduct and behaviour. But he was combative in a way that he didn't need to be. In a way, he was symptomatic of the way the state has treated people. And it was, um, if you look at things like hillsborough and bishop james jones um, he published a report the behest of theresa may, actually when she was home secretary. Um, she asked him to write a report about the experiences of the hillsborough family families and because she didn't want anybody else to have to go through what they went through.

    Clive Smith:

    26:26

    And Bishop James Jones' report he entitled the Patronising Disposition of Unaccountable Power, and Kenneth Clark was the physical embodiment of that phrase. When he gave evidence it was deeply offensive. And, as somebody said to me two things Firstly, he has no emotional intelligence. He never apologised, he never thought it was appropriate to apologise, he never sympathised with people's positions and secondly, it feels like he's just been a politician for so long. He can only ever see this through a political prism. It was all still about politics for him. There was absolutely no humanity from the man and I think that's what compounded what people have thought about Kenneth Clark for years, the way he behaved over three days of giving evidence.

    Angela Walker:

    27:14

    Do you think there should be any repercussions because of the position he was in at the height of this?

    Clive Smith:

    27:20

    Well, I've said in other interviews, I know some people are calling for him to be stripped of his peerage. That's not my position. My position is that if he wants to apologise to people, and apologise properly, then he might want to consider giving it back himself. So as far as I'm concerned, the ball is in his court. He's kept a low profile so far, as have many other politicians. I've mentioned a couple of former health secretaries by name, but it'd be very welcome if other health secretaries, or indeed prime ministers, wanted to come forward and say sorry for not calling a public inquiry sooner. I was wrong. I think that would actually be really powerful, and if there are any of them listening, then I'd encourage them to do that.

    Angela Walker:

    27:59

    Well, we can, but hope can't we. Now we've talked a lot about the political implications, we've talked about what happened, but on a personal level, you've got severe hemophilia. You've lived this. You know what was it like growing up as a you know, as a young lad, with this very, very serious condition and then everything that happened with this, with the scandal and people starting to fall ill and so forth. Talk us through that for me.

    Clive Smith:

    28:28

    Yeah, it was. It's obviously. It's been really difficult, obviously growing up under the shadow of this and at the time, of course, people didn't know whether they'd been infected and then, if they were, they didn't know about life expectancy. And I've sadly lost several friends to all of this throughout. I've sadly lost several friends to all of this throughout.

    Clive Smith:

    28:47

    Haemophilia when I was born in 1980, was a far more serious condition than it is now. It's still obviously a very serious condition and people can still potentially die from things like brain bleeds for example. But it meant initially that if you needed factor, you needed to go to the hospital. So many people talk about the hospital becoming a second home. It wasn't a second home, it was a first home for me.

    Clive Smith:

    29:24

    I spent a lot of time there In fact more time there usually than sometimes at home and growing up sort of near Windsor and going to Great Ormond Street it was an hour there on of being at school I'd for about two or three years, three weeks out of four, I go into school on crutches or in a wheelchair because I couldn't walk properly, because you end up having bleeds into your internal, bleeding into your joints where they swell up and you obviously then can't bear weight on them and then obviously by doing that, anyone who's broken a leg or an arm will appreciate that you lose muscle around it.

    Clive Smith:

    29:46

    But of course, if that keeps recurring, it becomes what's known as a target joint, and so I can't, for example, touch my shoulder with my left elbow because I had lots of bleeds into that when I was very young. My left ankle and my right ankle have both had bleeds into them over the years, so it was challenging. But because of that, because you spend so much time there, you spend a lot of time with some other people there too, and they become your brothers to an extent. So I had a good friend, stuart, who was two years older than me, who was also at Great Ormond Street, and he was sadly co-infected with HIV and hepatitis C when he was 27. And his story was told actually the week before the inquiry reported on Panorama, his parents, diane, mike Blake, and his sister, laura, on Panorama talking about Stuart, and that was really, really tough. When you start, when you lose your friends to.

    Clive Smith:

    30:47

    This's just horrific, absolutely horrific, um you know he was a young boy, I think he was seven, when he was infected. It's just, you know, 1000, around 1250 people with hemophilia, infected with with hiv, and I think 308 of them were children. And I talked about the fact that Sir Brian's been so clear in his findings. But one of the things we know is that, you know, in 1983, the United Kingdom Haemophilia Centred Doctors' Organisation was saying that children should not be treated with these imported products. But we know there were doctors like Professor Bloom who were in Cardiff who were still treating patients and he was the chair of the UKHEDO and he was ignoring his own advice. He was part of the cover-up and I think Sir Brian described his actions as unfathomable and I don't think anyone will ever be able to work out what was going on in Bloom's head.

    Clive Smith:

    31:39

    And Sir Brian was clear that children at places like Treloar School in Hampshire were being tested on. They were vulnerable. They were at a school away from home, away from their parents. They had a rare bleeding disorder which made them even more vulnerable, and then their vulnerability was completely taken advantage of by testing and experimentation by doctors there and it's just horrific to think about.

    Clive Smith:

    32:02

    It really is so growing up with all of this has been challenging, but it's been the privilege of my life to be to be the chair of the society during this time and actually get to where we are. It's been. I don't think I'll ever go. I hope I don't have to go through anything like this ever again in my life. And it's people like Stuart that, when you're tired and you're worn down by government and others, that it's because of Stuart that you get up every day. So the day the Inquirer reported, I tweeted a picture of Stuart that you get up every day. So, um the the Daily Inquirer reported, I tweeted a picture of Stuart and his sister, um, and I just wish he was here now to see what we've achieved. It's.

    Angela Walker:

    32:50

    I'm so sorry, clive. You went through that and Stuart will be so proud of what you've achieved.

    Clive Smith:

    32:57

    Yeah he'd be laughing his head off. I think that tweet got over a thousand likes and Stuart will be so proud of what you've achieved.

    Angela Walker:

    33:04

    Yeah, he'd be laughing his head off. I think that tweet got over a thousand likes. Well, I saw it because I've been following you for a long time, because we go back some many years, and I saw that for you, stuart, it's all been for you is what you tweeted, and and that, for me, epitomizes this, because, for all the politics, ultimately it was it's people like Stuart, people like you, people whose lives have been ripped apart and devastated by this, and I wonder do you think anything can be done to stop things like this from happening again? Clive?

    Clive Smith:

    33:39

    Patient safety has to be prioritised and you know we can talk specifically about this inquiry and then more broadly about other inquiries, but absolutely that's one of the things that Sir Brian said that patient safety has to be prioritised. The patient safety landscape is complicated, he said, and it needs simplifying and you know this community has been fighting for decades and when this inquiry was first set up, one of the things I did is I spoke to my counterparts in Ireland and in Canada. So a gentleman by the name of David Page in Canada and Brian O'Mahony, who's the chief executive of the Irish Human Feeding Society, and they were very clear with me. They always said there are two phases to this. They said, firstly, you need a good public inquiry. Secondly, you need a good government response and whilst compensation will be the focus of many in terms of the government response people like the Human Feeding Society and many other charities and campaign groups out there their focus will continue to be the government response. We will not let the government get away with not responding in full to this inquiry and they will have to explain why they are not taking forward any of these recommendations or indeed what they're doing to take forward the recommendations that have been made, and so we will continue that fight in their name to make sure this doesn't happen again.

    Clive Smith:

    34:53

    Because that's what unites everybody in all these scandals, be it Hillsborough, grenfell, nuclear test veterans, all those burning injustices, as Theresa May called them on the streets of Downing Street when she first became prime minister it's what unites everybody. They don't want anybody else to ever have to go what they've been through. You genuinely wouldn't wish it on your worst enemy. It's so horrific and it's so defining for so many people as well in terms of their their lives. It's been particularly in the contaminated blood community. It's been many people's that it's been their lives, work, um, and it's going to be really difficult, now that inquiry is winding up, for people to to find an identity and to find something else to do sure, because people like yourself and jason evans from factor eight.

    Angela Walker:

    35:39

    You've just basically devoted your whole adult lives, and before, to really shining a light on this and and and. Now that has happened. Where do you go from here? I mean, what are you? What are you going to do now?

    Clive Smith:

    35:55

    um well, I I actually have to step down as the chair of the Heme Fetis site in November. So I've been on the board for nine years and the chair for six. So our articles of association say that I have to step down. So it'll be time for me to hand over to somebody else. But I will continue to be involved with the Heme Fetis site and I'll be continuing to be involved in following through on the recommendations as well, but in a slightly cliched way, I suppose.

    Clive Smith:

    36:24

    I'm looking forward to spending some time with family and friends, because I've, like many of us, we've neglected them and you know, our fellow campaigners have become our friends and indeed our family as well to a large extent too. So I think many people are looking forward to getting a bit more of their time back. I know that two particular people they've both gone on holiday. They deliberately booked holidays immediately after the inquiry reported, which is exactly what they should be doing, because it really has taken a toll on people's mental health, all of this. Because it really has. It's taken a toll on people's mental health, all of this, and it will take some time for them to readjust and decompress and recalibrate as to where they are and what they're going to do.

    Clive Smith:

    37:04

    Um, so, uh, yeah, I, as you mentioned at the start, I'm, I'm, I'm a barrister, although I don't practice anymore. I did that for just over 10 years and I um still do some teaching. So, um, that teaching, so that's a nice distraction from all of this at times, although, of course, there's been a degree of overlap between my sort of professional and personal life in all of this. So, yes, looking forward to being at home in Yorkshire a bit more and less trains to London and back.

    Angela Walker:

    37:34

    Clive, thank you so much for talking to me. Thank you for being so open, because you've been through so much and I know you must be exhausted after all of the developments over the past week and the fact that you've devoted so much of your time and energy into this the emotional toll has been great. I can see that. So thank you for talking to me today.

    Clive Smith:

    37:57

    Pleasure. Thank you very much.

    Angela Walker:

    37:58

    You've been listening to Angela Walker in conversation. I hope you've enjoyed the show. Don't forget to subscribe, click to follow. You can find me on Instagram or check out my website, angelawalkerreportscom. Until next time, goodbye.

  • In 2022, more than 2.76 million experiments were carried out on living animals in Great Britain. More than 4,000 of those tests were carried out on dogs. Most of them were beagles. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today is John Curtin, who spent more than two years camped outside a facility in Cambridgeshire where they breed beagles to be tested on. Thank you so much for joining us, john. I want to hear all about Camp Beagle and what it's like being camped outside that facility MBR Acres in Huntingdon but first of all, what goes on in that place? What's happening in there?

    John Curtin: 0:49

    People think this stuff was banned in the 70s. I can tell you now I'm an eyewitness it's absolutely going on today. It's very simple it's a beagle factory. What do those beagles get used for? They get used for insane, cruel, outdated, useless toxicology tests that were invented 70 years ago. 70 years, two van, two van loads you talked about millions of animal experiments two van loads of dogs went out. Today we believe they're going to go to charles river because, because they're only used for toxicology tests, they only go to like charles river toxicology tests. They only go to Charles River Toxicology Laboratory, huntingdon Toxicology Laboratory and Sequani in Ledbury. So they breed dogs for cruel, outdated, useless experiments. The reason they do it at the site they are is because check this out, don't believe anything I say. They were kicked out of italy. The staff were imprisoned in italy. They had to leave italy because they said it was too restrictive. Marshall bio resources is an american multinational company and they decided to seek sanctuary in the uk instead.

    Angela Walker: 1:58

    Uk, the nation of dog lovers you're really confident about this kind of toxicology testing. How do you know that that's what's happening?

    John Curtin: 2:08

    Because we're the nosy neighbours, like we'll come to the camp, and I've lived there for like two years and nine months. I've been involved in the anti-vivisection movement for 40 years. Before the camp I wasn't really aware too much about these toxicology tests, otherwise known as regulatory procedures. Since then we've studied and it's very hard to study these experiments because they're all shrouded in secrecy. They hide behind wall after wall of secrecy. But we've now discovered that virtually all, nearly every dog that leaves NBR and it's the only beagle breeders for labs in the country they all go to toxicology labs.

    John Curtin: 2:44

    And why do they do it On the project license? They have to give a reason and their reason is this because we've done it for 70 years. Science has moved on in all the areas except this area and that's why no one in this country will defend it. Good luck to you for finding anyone to talk about these tests. No one has come up so far. There's a paid lobby group that will do it if NBR paid them, but not a single MP, not a single scientist, not even a single toxicologist.

    Angela Walker: 3:18

    No one will defend these tests. Actually, I have been trying to get hold of someone from NBR Acres and nobody's responding to any emails. I've been chasing them for weeks and weeks, and weeks and haven't been able to get hold of anyone. I would say that's a strategy.

    John Curtin: 3:30

    It's a strategy employed by the animal testing industry since they began.

    Angela Walker: 3:37

    So there is an organisation called Understanding Animal Research and they say there are three main reasons for animal research to advance scientific understanding to develop solutions to medical problems and to protect the safety of people, animals and the environment. And they say we'll be very unlikely to achieve many significant advances in scientific understanding or the prevention and treatment of diseases without animal research. They don't think it it's possible for scientific research to be carried out without using animals. What do you say to that?

    John Curtin: 4:13

    I say that they're the paid lobby group that I was talking about. Their wages are paid by marshals. Marshals pay them. They're a lobby group. I'm not going to give them the light of day, not because I can't be bothered. They're a paid lobby group. Come up with one other person apart from them. It's just not good enough. So it's not true. George Bernard Shaw said anyone who wouldn't hesitate to vivisect would hardly hesitate to lie about it. But that's why these walls are secrecy coming. They're not used to exposure and when they are exposed they lie. But the main defense is silent, silent silence. Since when is silent science so?

    Angela Walker: 4:51

    tell me. Tell me a bit more about what's going on inside camp beagle. I've seen some undercover footage for anyone that's uh listening to this podcast. If you have a look at the video uh online on youtube, I'm going to be putting some uh some footage up there, so we've got some inside footage from inside camp beagle.

    John Curtin: 5:10

    Talk us through what this undercover footage shows, john okay, any image we can get is precious of inside these places, because I spoke before that wall after. The mps have got no access to mbr, the rspca have got no access to mbr, the rspca have got no access, the police haven't, the mps haven't got access. It's covered in walls of secrecy. So by an ingenious message nine foot long fishing rod with a tiny little camera we managed to get that in through one of the air vents and it's all worth it. Fear has come true.

    John Curtin: 5:47

    I was going to say the smell, that's the only thing that didn't come out. The noise, the dirt, remember. These dogs have never got out. There's no outside run for these dogs. They live in their own feces at your line and it's just a madhouse. So what was depicted in those images which you'll see? It's happening there now. There's no seasons, there's no exposure to any natural daylight, they're not treated as dogs, basically, and that's why they were sent to prison in Italy. Yet they can come to the UK and hide behind the Home Office. It's the Home Office who's in charge of these experiments in the UK. The Home Office.

    Angela Walker: 6:24

    They're in charge of the police, immigration, security, what they're doing with beagles, exactly and I know one of the reasons that they pick beagles is because they are a particularly docile breed of dog. And, um, I talked earlier about 2.76 million scientific tests on living animals in Great Britain. Those are official government figures and you know more than 4000 of those tests are on beagles because they are so passive. Just tell me about the scale that you've witnessed, because you say that you see vans coming and going. Tell me a bit about that.

    John Curtin: 7:07

    Two vans left this morning. I'm not at the camp at the minute. I've been bailed away for possibly contravening some drone regulations. Anyway, I'm not there at the minute but I hope to be back there for next Monday. My bail conditions are going to be changed. Two vans left there today. Two days ago another van left when they leave. We've got people up and down the country. We don't need now we've perfected it Because they only go for toxicology tests. We send people to Huntingdon. There'll be people waiting up. In Scotland it takes six hours to get from MBR to Charles River and the. Where are we now? Near 12 o'clock? They left about so they've got about three hours to go. We believe they're going to go to Charles.

    Angela Walker: 7:48

    River On its website, charles River Laboratories says research animals have contributed to nearly every medical breakthrough in recent history, including treatments for cancer, diabetes and AIDS, and they continue to play an essential role in the development of life-saving drugs for people and other animals. It goes on to say the welfare of the animals contributing to research is of utmost importance and a prerequisite for the accuracy, reliability and translatability of our research.

    John Curtin: 8:19

    They were always coming up with these wonder cures We've cured cancer. And they give you a little diagram of cowboys in india, how they're attacking diseases and they'd always say and we found this out because of mouse experiments. So people would often engage with you. The first thing they might say when you did a stall is hey, listen, my granny had cancer. I know a little boy with leukemia. But now the situation people are not saying that. So much now the trust has gone. People used to.

    John Curtin: 8:45

    Maybe in the 1950s and 60s and 70s the government could sort of get someone stick a suit on. I'm going to shirt and tie, stand them next to someone with a white coat and people will believe what they're saying. Those days seem to have gone. So it's an industrial process. Mbr don't have to advertise. Who wants our beagles to advertise? It process. Mbr don't have to advertise who wants our beagles to advertise. It's the same customers going back 10 years, 20 years, 30 years, 40. It's an industry thing. There's no UK law requiring these tests.

    John Curtin: 9:13

    We need to change and change is in the air. If we all go home, if we don't do anything more about these toxicology tests, guaranteed they're going to stop. We've seen lots of documents from within the industry. We've reached out to the industry and everyone just passes the book. Yes, we know, we're aware that change needs to be implemented and in fact we're going full steam ahead with that, but their timescale will be something like 20 years. These toxicology tests are doomed. So that van load that went out, two van loads that went out today. It's always been a waste of life, but it's like we're stuck in the mud. I'm kind of sick of winning all the arguments. There's no one to argue against me. Where are the professors and the scientists and the professor from Cambridge University? There's nobody there. We've won the argument, but there's no change. Change is coming.

    Angela Walker: 10:10

    It's interesting you say about the change, because there was a parliamentary debate in February and that was because of these public petitions against this animal testing and there was support from some MPs and Professor David Mayne from the Animals in Science Committee wrote to the Minister, Andrew Griffith, who's in charge of science, innovation and technology, after the debate, welcoming plans to reduce reliance on the use of animals in science. So it looks like this new approach methodologies without animals is moving forward. How much hope does that give you, John? Change you said it yourself change is coming, Do you feel? How hopeful do you feel?

    John Curtin: 10:52

    Well, I hate to use the the term, but it's painfully slow, pain in my heart and pain for the dogs that are being taken to a laboratory now as we speak, that are going to have a tube placed down their throat, perhaps a few times a day, to administer these substances. That's the pain, so painfully, painfully slow, and shame on us all for letting it to these substances. That's the pain so painfully, painfully slow, and shame on us all for letting it happen. Now we've pointed it out, forget why it happened in the past. We've tackled this now, and do you know what big difference this time now? Look, I've had 40 years. I've been involved. That site has bred beagles for 60 years. In 1990, I was arrested for raiding 82 dogs. I was arrested for raiding 82 dogs. I was sent to prison for 18 months. Other prisoners and other people couldn't believe it. What are you in for, mate, taking some dogs from a laboratory? They're like you, what? So we've got a long history in this country. It goes back over 100 years, the anti-village section movement in this country. But we're at a point now, a really frustrating point, and stuck in the mud is the best analogy.

    John Curtin: 11:55

    If you look at that government, that letter you talked about from david name. That's the first letter on behalf of the uk government ever where they say it's not uk law, it's the I forget what they call it in that international requirements or international regulations. Uh, what else is covered by international regulations? You know it's a nonsense. It needs looking at. This thing has never been looked at, it's just run by civil servants. Like that letter from David Mayne, they're finally talking about putting the responsibility into where it should be the Department of Science. At the minute it's the Home Secretary that writes off all the experiments and is in charge of those NBR dogs. The suffering of those dogs that goes back again. Suffering of those dogs that goes back again over 100 years. That's why the Home Office are involved. Change needs to happen.

    Angela Walker: 12:41

    I did contact Andrew Griffith, the Minister in Charge of Science, to see if he was available to come on. He wasn't. I did offer a selection of dates and you know I would have been happy to move the podcast so that we could hear from him, but he wasn't. I did offer a selection of dates and you know I would have been happy to move the podcast so that we could hear from him, but but he he wasn't able to make it, unfortunately.

    John Curtin: 13:00

    He said in parliament the day and he said it. He said it in our debate and he said that a week afterwards. The day cannot come soon enough when we put an end to the practice of animal testing. I'll quote it word for word, because I'll remember it for the rest of my life, and then a comma, if you could. But that day is not today, ugh.

    Angela Walker: 13:22

    Tell me about Camp Beagle, because it's like the longest running protest of its kind, isn't it? How did Camp Beagle get started? Take us back to that.

    John Curtin: 13:31

    Okay, in terms of protest camps, I think there's only one other one that beat, you said, of any kind. It's the only animal rights one, green and Common way back in the 80s. That went on for 20 years. That puts us like moderates, but we've been there for nearly three years. It happened by accident. It happened on a small demonstration.

    John Curtin: 13:53

    One woman just said, when it came to leaving, because when you go down the side, all the dogs are in. They're in soundproof buildings, but when you go near the air vents, the sound escapes and it's kind of it's so shocking. And this woman just said I'm not leaving, I can't go home. And she stayed the night and someone else heard that she'd stayed the night. There was two of them that stayed and then the word got round and then a few more people turned up.

    John Curtin: 14:20

    I tried to keep away from the place Because, like I said, I had that history and I thought, oh no, there's a camp. If I go there, I'm going to get stuck. That's exactly the side of the road. I can't believe we're still there and there's a team of us. Like I said, I'm not there at the moment, but there's a team of people there at the moment. We live by the side of the road. It's extremely tough. We get lots of love and we get lots of support, but you're right next to this horrible, horrible beagle factory, so it's a really difficult place to live. I'd go so strong as to say it's broken me. I'm a bit of a broken person sitting here because of the experience I've had there. It's a very tough gig and I've spent too much time there.

    Angela Walker: 15:04

    And I know you're not at camp at the moment because you were arrested quite recently. Tell us about what happened then.

    John Curtin: 15:12

    I've flown the drone for nearly nearly every day, I'd say since I've been at the camp. Well, I couldn't fly a drone when I got there, took me a little while or so. For two and a half years I've flown the drone every day. We've got mbr spent three million pounds to try and get rid of us at the high court with civil injunctions they're desperate to try and stop us flying the drone. It's a little drone.

    John Curtin: 15:37

    There's many drone regulations, but if you get one below 249 grams there's hardly any regulation. So, for example, we've got police officers who come to the camp. Maybe they want to ask us some questions about some forthcoming donors. I'd happily chat to the police while I'm flying the drone. Those same police officers one of the same police officers that I routinely chat to. They just turned up in a sting operation one day three of them. I was standing there as soon as I landed the drone. They said we want to speak to you in connection with the drone.

    John Curtin: 16:07

    When I landed the drone the next thing I know I was on the ground with handcuffs tied behind my back, to the point there was blood when I got down to the police station, on my wrist when they stood me up. The next thing I looked to the right three vans the vans that come when they collect the dogs. They arrived so it was like a sting operation of the police to stop me capturing the dogs being loaded into the vans and then the police have bailed me away. But it's the second time I've been bailed away. Um, I think it's a bit of a police tactic actually. I was found not guilty on the charges the first time and with these drone regulations I'd be happy to go to court tomorrow and be dealt with, perhaps, if I was guilty, by a suitable fine not being bailed away. But I'm hoping I'm getting. I'm applying to court next mond Monday to get my bowel conditions changed and I'm suitably rested and I hope to be back there on Monday.

    Angela Walker: 17:01

    What can you see when you get your drone up over that site? Mbr Acres site, John, what can be seen?

    John Curtin: 17:08

    It's a Beagle factory. Everything they do, I remember there's no outside runs, the dogs never get out, but occasionally they move dog from shed to shed, and those moments we capture when they're in a trolley. They've now even covered the trolleys up, though, and even where they load the vans they've now built a canopy to hide that process, but still, you know, we fly the drone just because we want to know what's going on.

    Angela Walker: 17:34

    Now I've seen some footage, some undercover footage, taken by someone who went inside that site, um, as a worker, and they and they were shocked and they took some some film. They did some filming while they were in there and there was film of puppies. Uh, tell, talk us through that, because I know you've seen that footage and one of the things that upsets you is about the young pups. So just tell us a bit about that.

    John Curtin: 18:01

    Yeah, I mean there have been so few whistleblowers over the years that have come forward. You think because people, when they get jobs for these places, the advert says do you want a qualification in learning how to look after animals? It doesn't say anything about animal experiments. So you go and get the job and the analogy I use is an old people's home where abuse is going on. You know, if you went to work there and it's like institutionalized cruelty happens and it's something you either put up with when you first start If you put up with it, then you could be there for the long run and you're going to bury what you see or you just reject it and then leave and blow the whistle. So few people have blown that whistle, I think they bury it so deep. But one woman came forward and before she left she got some images on her phone, very simple images of her just walking down the corridor, but from those you pick up the noise, the mayhem, and she told some some. She didn't tell any stories about kicking puppies or punching them, but things like the story she told of a little dog, a little puppy called mini, that that puppy was in trouble because it's the runt of the litter from 4pm to 8am 4pm today. All the workers leave. There's no one overnight to look after the dogs at a weekend and I even think I'm making this up I still can't believe it. It shocked me when I first saw it over 2 and a half years ago. On a Saturday, the workers leave at 11am. They leave at 11am and they don't come back until 8am. What about little runts? What about little mini? Anyone knows puppies.

    John Curtin: 19:42

    Puppies are taken away at six weeks from their mothers. They're put under a red heat lamp. Do you know what they're offered On film? Like a bucket of dried food which they just sit next to and look at. You know what Puppies are like? Six, seven weeks? They're voracious. You know, make them some wheat a bit. So little dogs like Minnie. She wasn't able to catch her on film. She caught one little image of Minnie it's a little runt and she tried to take that dog home. She asked him if he could take it home. But there's no procedure there to help, to give dogs extra help, things like that Even let's think about this. Dogs are taking it six weeks old, say, when it comes to their first weekend. Then dogs will go from 11 o'clock until 8am the next morning, six, seven week old puppy. So yeah, very precious images. She couldn't handle it anymore. She was disgusted. She'd worked in a lot of dog places and she just couldn't believe what she was seeing.

    Angela Walker: 20:36

    But they'll find someone else now let's talk about this group called animal rising, because they've actually broken in and, uh, taken some dogs out of that site. They've really kindly said that I can use their images, so let's talk about animal rising and what they've been up to yeah, I can't put it and think of it in any other way except hallelujah, I can't.

    John Curtin: 21:05

    When I went to prison for taking, those people were saying what are you in prison for, mate? And I'd say taking dogs out of a laboratory? I've still yet to come across a human being. That's actually said to me, apart from the judge. Oh my god, that's terrible. Like what the Animal Rising people? I can't. It's not a crime technically and even the police refused to see it as a crime.

    John Curtin: 21:29

    So Animal Rising, they're a group, they're sort of the new generation of activists, and back in the day, when you said it was balaclava, we'd appear out of the darkness and disappear. Back in the day we used to do balaclavas, we'd peer out the darkness and disappear back into the shadows. Animal Rising do it in the open, no balaclavas. After they do actions, they hand themselves into the police station. So they came, they did an action. They broke in On the first occasion. They took five dogs Even though there were security guards and stuff on site. They were so determined. The first time they did it they hadn't even got through defence and they had the distraction demo at the front. They could hear security guards watching them even before they broke through defence. But they were that committed they went ahead and did it and they're quite well trained. So there's no violence or aggression, but they did the job. Do you know what they did? They were handing themselves into the police station, three of them. The next morning they said hello, officer, I'd like to report myself for what you would consider a burglary, some theft of what you would consider as property.

    John Curtin: 22:29

    The CPS two weeks later said they were unable to charge them. Do you know what? The official reason given was Lack of evidence. Lack of evidence, they didn't want a court case. Animal Rising came back. This time they took 20 dogs. The police managed to get two of those dogs back, love and Libby. The police, actually there was a huge campaign to please, please, please don't send them back to NBR, and between the police and the Home Office they both blame each other. Those dogs will return to NBR. So to me those were definitely the two happiest moments of the entire time at the camp. The two most important.

    John Curtin: 23:09

    What's more important than liberation? Nothing is more important, nothing is more beautiful. But that's good for those five dogs and those. I was going to say 20 dogs, but it was 18. But you talked before about millions of animal experiments, so you can keep rescuing these dogs. It's very difficult logistically, but that can keep doing it, but it's not going to stop it. It's a very beautiful thing to do. For the dogs themselves themselves it means everything but the so let's, let's go ahead from all angles, and that's one of the angles. Like I said, there, I felt to my knees and I cried my eyes out on both occasions, you know, when I got the news and they didn't tell us have a comment, and they didn't need to, they just came, they saw and they conquered you've been at that site for nearly three years.

    Angela Walker: 23:59

    John, you're going to be going back to camp beagle soon. How long are you going to stay there for?

    John Curtin: 24:06

    good question. And when I normally do the live street and no surrender, I never give up. I kind of uh, I'm like because I've been using that language so much and I'm broken, but because there's a team of us and we can look each other in the eyes. It's not a slogan. We're going to stay at that camp until NBR shuts down, and as a business. Remember, they came here because they had to leave Italy. They lost in their last annual report they lost £800,000. They lost £800,000.

    John Curtin: 24:39

    They came here to make money. They've spent £3 million which hasn't come out of NBR's budget. We haven't. We cannot find out who's paying their legal fees. It'll be the main company of NBR in America, but they've lost £800,000. We're the nightmare neighbours from Hellforum. We ain't going nowhere. No one's there to defend them. It's not looking good, but I don't know.

    John Curtin: 25:04

    But however long it takes, I can't imagine giving up. It really is a kick in the stomach when the vans come and go and because we're there and it's all under cameras, we deliberately don't break the law and stay within the law so we can maintain our presence there. But it's a kick in the teeth, in the stomach and a stab in the heart. We've got no intention of packing up. When we get through a winter, it's like, oh my God, we did it, we ain't doing next winter. It's really every year I don't use that normally, this I don't. We just say never give up as soon as you asked, because people don't really ask, they just believe our slogan. But after the winter you're like no, I can't do this again, but we're mad, and so I think think we're mad in a good way.

    Angela Walker: 26:02

    John, thank you so much for talking to me and for sharing your story and all your concerns about what's going on at MBR Acres. Thanks very much.

    John Curtin: 26:06

    Thank you.

    Angela Walker: 26:07

    You've been listening to Angela Walker in Conversation. I hope you've enjoyed the show. Don't forget to subscribe. You can follow me on YouTube, I'm on instagram, I'm on x and you can find more human interest stories on my website, angela walker reportscom. Until next time, goodbye.

  • Around 100,000 people in the UK are living with HIV and 75% of them say they face discrimination because of it. Why is that and what can be done about it? I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today is Matthew Hodson from the charity AIDS Map and who describes himself as shamelessly HIV positive. Matthew, thanks so much for joining us today.

    Matthew Hodson: 0:30

    Oh, that's a real pleasure, thank you.

    Angela Walker: 0:32

    Now we're going to discuss the stigma of HIV that still exists in a minute, but first could you share your story with us? What happened? When did you find out that you were HIV positive?

    Matthew Hodson: 0:44

    Well, I was diagnosed in 1998. Now that's kind of quite significant, because that was just about 18 months after they had discovered they could treat HIV. So it was quite a different world. We no longer had kind of nothing to use against HIV. But at the same time, when I was diagnosed, I remember that the consultant said to me it's okay, we can treat you now. You've probably got another 20 years, and so, because I was 30 at the time, I thought well, I need to live to 50. That's the goal. Can I just make it as far as 50? And I mean spoiler alert, I'm 57 in August. So so I kind of got that goal and I think I've still got a little bit of petrol left in the tank as well.

    Angela Walker: 1:29

    I think so. I think so, but you're smiling now. But what was it like at the age of 30 to get that diagnosis? How did you feel?

    Matthew Hodson: 1:38

    um, I think. Well, I'll tell you this. I remember afterwards I I sat on the tube and the words that the person had said to me was your results will come back and we're sorry to tell you that you are, in fact, hiv positive. And those words were just like echoing in my head. And so I sat on the underground and you know people facing me and I thought they can hear it, can't they? They all know that I'm living with hiv.

    Matthew Hodson: 2:03

    And I got back to my office and I emailed my very best friend, who was living abroad at the time, um, and said you know, look, I've got this news and I need to talk to you about it. Can you kind of give me a call when, when it's possible, and there's a time difference and everything like that. So I didn't know when he was going to speak with me and he fortunately he got the email straight away. He said I've got your news. You need to know. You accidentally cc'd one of your colleagues into this email. I mean, this was in the days when email was still quite new, and so I obviously made some like terrible mistake and I tore down the office corridor to kind of reach this person and just say look, you've got an email from me. Please, please, please, just delete it, because I just couldn't share that news at that time because it was a lot to process.

    Angela Walker: 2:48

    And what's it like now? You know, back in the 90s I mean there was a stigma around. It wasn't there, and I mean have things moved on much since then?

    Matthew Hodson: 3:08

    I mean, I think it's quite difficult to say, because I think it doesn't take a lot of experience of stigma to make you feel that this is a hostile environment. So you know, I mean you could go into, like, say, I could go onto a gay dating website or something like that, and you know it'd only take one person to say, oh my god, you make me want to vomit because you've got hiv, to make me feel that that was a really negative, terrible place. But that may be a very rare event, but it only takes a small amount to make you feel that you're pressured. Do I think things have got better? I think in lots of ways things have got better, partly because people like me and many others are now very open about living with HIV, and I think that does change the way the narrative is, and I think we need more of that. But are we as good as we should be by now? And I would say that we're not.

    Matthew Hodson: 3:54

    I think I mean I do encounter kind of very kind of casual stigma. I guess I would describe it as People sort of assume that if I'm living with HIV, that perhaps I need to be pitied a bit, or you know, that's kind of a sad story, and for me isn't a sad story because I'm healthy and I'm well and I expect to live for a long time. It's it's just a part of who I am now, rather than a sad element and so like, for example, if you're watching a reality TV show, and I mean kind of on RuPaul's Drag Race, I mean pretty much every season, there will be one person who's living with HIV and who will share the fact that they're living with HIV with the other competitors. And as soon as that moment starts, you just know it's the sad music and it's the tears. And I just really would love it one day to be watching a reality TV show where someone says, yeah, I'm living with HIV, it's not a problem for me, it's a problem for other people Maybe it's not my problem.

    Angela Walker: 4:47

    Yeah, talk to me about the treatments that are available now, because there was a time where, like you said, you were told you had 20 years left and to hear that you had 20 years would have been fortunate back in the day. I mean, you know, let's not, you know, let's not beat around the bush. It was a terrible diagnosis for many gay men. They didn't. They didn't get that 20 years. But now the treatments available, um, can you can live a really long and healthy life. To talk, talk us through that, because I don't think many people realize just what's available for people living with HIV.

    Matthew Hodson: 5:24

    I mean there's quite a wide range now of different treatments which are available. For many people they're just on one single pill a day. Personally I'm not. I'm still on three pills a day, but that's just a kind of a regimen which kind of suits me and I kind of a little bit kind of loathe to change it because it's working.

    Matthew Hodson: 5:41

    But yeah, if you are on HIV, if you are diagnosed promptly, and so if you're living with HIV and you're diagnosed promptly and you have access to treatment, your life expectancy is pretty much the same as someone who doesn't have HIV.

    Matthew Hodson: 5:55

    And in some cases it may even be that you might live a little bit longer because you're already kind of involved with medical services.

    Matthew Hodson: 6:02

    So if there are any other conditions which arise, you're much more likely to have the opportunity to talk about it with a health professional already kind of involved with medical services.

    Matthew Hodson: 6:06

    So if there are any other conditions which arise, you're much more likely to have the opportunity to talk about it with a health professional. So I think a lot of the stigma that we still encounter is kind of based on this outdated concept of what it is to live with HIV, and certainly when I was a young gay man. That was my life, I mean, and also when I was diagnosed with HIV, I was just going to a lot of funerals and I think that was a very common experience for people of my generation and the generations above me. We experienced death on a scale which normally isn't seen outside of wartime and I think that terrible time and some of the HIV awareness campaigns of that time, you know, with featuring tombstones, they kind of created a narrative around this is what HIV is, is it's always about illness and death and doom, and of course, that in itself becomes stigmatizing, because it becomes this idea that you can't live a full, healthy, productive life if you have HIV.

    Angela Walker: 7:06

    Yeah, it's interesting that you mentioned that ad. I can see it in my mind's eye. You know the tombstone ad and that's what we associate, and maybe not everybody's kind of moved on from them because we're not seeing big advertising campaigns now saying it's okay, if you've got HIV you can live an active and healthy life. So do you think that we should be educating people a bit more about? You know what is available for people who've got HIV?

    Matthew Hodson: 7:34

    I think it's so important that we do tell people how things have moved on. I mean, and that's something which I can really try to do through my work and through, like my social media and all of that is to educate people on how HIV has changed over the decades. And I mean there's very good reasons to do this. I mean, obviously, the one reason is let's let's really challenge stigma, let's challenge all the reasons behind stigma by really sharing the great news that we can live long lives and also and this is really important that when you're on an effective HIV treatment, there is no risk of sexual transmission. I can't pass HIV on to my sexual partners, no matter what I do. It's just not possible because I'm virally suppressed to the point of being undetectable and that means that the risk is zero. And again, I think this is a really kind of great way of tackling stigma through information.

    Angela Walker: 8:26

    One of the stories I've reported on a lot over the last few years has been the infected blood inquiry, where lots of people were infected with HIV hepatitis through contaminated blood products, and one of the men that I've been in touch with through the years, jason Evans. He said recently that his mom was sacked from her job because her husband was HIV positive. Now she wasn't HIV positive, but that's how strong the stigma used to be back then. Do you have any more recent examples of this kind of thing, or have we seen an end to it?

    Matthew Hodson: 9:02

    Well, people living with HIV are protected under the law, so they should not be sacked for living with HIV. However, often with laws like this, there's the way the law is and then there's the way people act. And obviously with HIV, if someone is particularly not wanting to be open about living with HIV, if they were sacked for living with HIV they may not want to pursue that because of course that would only kind of with HIV. If they were sacked for living with HIV, they may not want to pursue that because of course that would only kind of embed the fact that they were living with HIV with a large number of people.

    Matthew Hodson: 9:31

    One of the projects which AIDSMAP is involved in at the moment is something that we're working on together with two other charities National AIDS Trust and Positively UK and that's the HIV Confidence Scheme, which is actually to support employers to make sure that they are treating any well, any staff who may live with HIV kind of fairly and courteously and correctly, but also so that they can treat any customers or clients that they may have who live with HIV in a way which is appropriate, because some of those kind of fears, I mean, it's always about fear and ignorance, it's about that idea of well, what if I catch it? You know, what if I can get it from a mug, or what if I get it from a tea towel or something like that? And of course, these are not ways that HIV is transmitted. So it's really important that people, employers as well as the general population are educated about how HIV is and is not transmitted, and about how life is for people living with HIV. Now.

    Angela Walker: 10:28

    It's interesting, isn't it, when Princess Diana was, you know, shaking the hands of people who are HIV positive and holding children and really you know normalizing it and kind of you know saying it, you know it is okay to touch someone who's got HIV. Like that was quite a long time ago, but back then that was quite pioneering.

    Matthew Hodson: 10:51

    Yeah, I mean, I think for the time it was incredible, and you know, I don't think it was brave because I think she knew exactly that there was no risk, but I do think it was important because lots of people did still believe that there was a risk. Um, I mean, I think we lost a really wonderful ally in princess diana. I know that she would have been absolutely thrilled with the news that actually, not only is there no risk from casual contact, ie shaking hands, um, or, you know, holding each other or hugging or cuddling but actually now, with effective treatment, there's no risk from sex, um, at all. So I I mean, just one thing is like kind of sometimes people say, oh well, I would hug someone with hiv. I'm like, well, that's not really that much of a sacrifice, is it? I mean, do you want a medal for that? I mean, really, come on, let's, let's be real about it, because we can have sex now without condoms and there is no risk of transmission.

    Matthew Hodson: 11:46

    So a hug just feels like a little bit of a kind of yeah, I think you're picking yourself up a bit with that one. That's my prize winner. I do think it's that old totemic advert which still is in people's heads. So can we change that narrative? Yes, I think we do, we can and I think we should. I would say that for me it's really important, if we're going to be talking about stigma, that we do so in a way which actually shows people with HIV as kind of strong, empowered, resilient people rather than as victims. I don't want ever to be seen as a victim.

    Angela Walker: 12:21

    Well, I must say, because I am a follower of yours on Twitter and that's how I got in touch with you, and you're always posting these amazing pictures of you at the gym and you're looking really buff and you've got your muscles out and you are a picture of health. You know, you're a real poster boy for the good that these drugs can do, aren't you?

    Matthew Hodson: 12:41

    Well, I mean, but that's the thing is, when I first was diagnosed with hiv and you know, if you googled hiv or guys with hiv, it would always be people with very severe side effects. I mean, often it was people with an aids diagnosis and I felt the burden of that, because if I talked about living with hiv, that was instantly where people went to and I was like, well, what could, what could I do personally to perhaps change that narrative a bit? And that's why I started posting these ridiculous gym selfies and all of that, because I kind of thought, hold on when I'm saying that people with HIV can live long and healthy lives. I've actually kind of got a bit of a visual example which I could use for this. So I mean it is, I mean it is quite deliberate, I mean also, I mean I'm a gay man and I work hard at the gym and I kind of go. Well, you know, that looks good.

    Angela Walker: 13:33

    I want to share that. If you've got it, flaunt it. If you've got it flaunt it.

    Matthew Hodson: 13:36

    I mean absolutely.

    Angela Walker: 13:47

    Well it's, it's great to see you always looking so happy and so fit and healthy. But do you think there are some young men who might be afraid to check out if they've got a diagnosis? Do you think there's the stigma is still there, or have we moved on from that?

    Matthew Hodson: 13:57

    no, I think we absolutely haven't quite moved on from that and it is so important, um, that we can get, we can encourage people to test, and that is you know also why I do it is. I think there was this old. In the old days they used to do these hiv prevention campaigns and it was all like you mustn't get hiv. It's the worst thing that could possibly happen. Now, how's that encouraging testing?

    Matthew Hodson: 14:21

    because, you know. If people say, oh you, you know, right now you're walking along and getting on with your day-to-day life and everything's fine, but if you take a test, then the worst thing in the world could possibly happen to you and people go well, yeah, perhaps I'd rather not know, but of course, when people do know, then you can access a treatment. Treatment will mean that you will live a long and healthy life. Treatment will mean that you can't pass hiv onto your sexual partners. This is how we end the epidemic. We end the epidemic by getting everyone to test. I mean, if they, if they test positive, putting them on treatment. And we end the epidemic by telling them look, test positive, it's fine, go on treatment, won't be stigmatized. I mean, obviously that's not where we're at, but that's where we need to get to, because that is how we stop new infections happening.

    Angela Walker: 15:05

    So how important is this early diagnosis then, Matthew?

    Matthew Hodson: 15:10

    It is important because if the virus is allowed to kind of process unchecked in the body, then it will do harm and some of that may become at a a later stage that may become irreparable. It used to be when I was diagnosed. The treatment was pretty toxic and there was kind of quite a lot of side effects, and so at that point what they were saying was don't start treatment until you really need to. I mean, kind of like you'd be pretty much on the verge of getting ill and then they'd say, okay, start treatment now, because that way you'll have less time with the side effects and that's probably better for you. Since that time we've got much better at dosing so and we've kind of got new drugs which are available and kind of.

    Matthew Hodson: 15:56

    You know, different drugs do slightly different things. They will have slightly different side effect profiles and they'll be kind of they'll. You know, certain drugs will be better for some people, other drugs will be better for other people. I mean, that's kind of just the way it is, as with pretty much every kind of medical condition which has a range of drugs to treat it. But you don't, you're much, much less likely to have those kind of side effects now, and so I think that's that's that's really important that when they did a study on, well, what's the best time to start treatment, they found that actually starting treatment earlier was much, much better. So now if you're diagnosed, you're put on treatment pretty much straight away. They try and kind of get you into that process before you leave the clinic, and I think that's really important.

    Angela Walker: 16:40

    Talk to me about your work at AIDSMAP. What's that charity all about? What do you do?

    Matthew Hodson: 16:45

    So AIDSMAP provides information for people living with HIV or people affected by HIV or people working in HIV, and that's a global information resource. So we reach people, obviously, across the UK and Europe, america, australia, africa, south East Asia, india. And I'll tell you, what's really wonderful about my job and this is something which just it's just amazing is that if I go to an AIDS conference or something like that and I meet people and people go oh, you're Matthew Hodgson, you work for AIDSMAP, and they will tell me a story about how AIDSMAP saved their life. And that's just an amazing feeling.

    Matthew Hodson: 17:35

    You know, and I get that. You know I'm so privileged. I get that on a regular basis because aids map is there for people, often when they're just diagnosed, often when they're really scared, often when they feel like they may have no future at all, and we're there with accurate, reliable and accessible information, which often that provides real reassurance to people that there is hope, that there are treatments, that they will live a long time, that they can have children, they can have grandchildren and they will live to see those grandchildren. It's life-saving.

    Angela Walker: 18:03

    You look really emotional. It means so much to you, doesn't it it?

    Matthew Hodson: 18:06

    It does, I mean, it's one of those know, one of those. I'm trying to be good grit to uh sorry, I'm trying to uh experience gratitude and you know, think about the things which I'm grateful for, and that is certainly something that has been an amazing part of my life is to have been involved with and to have supported people living with HIV all around the world in that way.

    Angela Walker: 18:36

    When you say that it saves people's lives. Talk me through that a bit more.

    Matthew Hodson: 18:42

    Well, I mean, I think one of the reasons it saves people's lives is that actually people feel despair sometimes when they're diagnosed with HIV and that's because that burden of stigma, that burden of fear, is so great. But also it saves people's lives in as much as we give people the information which they need about treatment. And obviously sometimes you know those treatments change or the you know the side effect profile, new things kind of come up. So we're reporting constantly on the news around treatment and around what's successful and what works and what some of the challenges are, and so obviously that also helps, um, you know healthcare professionals in terms of kind of working out what's the best treatment courses for the people that they're seeing. So you know we genuinely are, we're there and we're saving lives through the information that we share, both for people living with HIV and for their health care providers.

    Angela Walker: 19:31

    It's really interesting that you mentioned about the kind of global aspects, the global reach of that charity, because, of course, in some countries it's still illegal to be gay.

    Matthew Hodson: 19:41

    So you know, we talked about the stigma and it's easing perhaps here, but what's the stigma, like you know, for people living in other parts of the world well, I mean, I do think that homophobia is one of the reasons why stigma is still so prevalent, but, um, I think we also have to remember, of course, that hiv, on a global level, um, it affects many more heterosexuals than it does affect gay people.

    Matthew Hodson: 20:09

    Um, I mean, there's kind of really some quite terrifying new laws that have been introduced recently in Uganda and in Ghana which are kind of very harsh penalties for homosexuality, and one of the challenges that presents is it means that gay and bisexual men and trans people are going to be less likely to access those life saving services.

    Matthew Hodson: 20:38

    I mean, in Uganda it's kind of frustrating because actually they were doing pretty well in terms of their ability to diagnose and treat people living with HIV, but this, of course, is going to really hamper their prevention efforts. Diagnose and treat people living with HIV, but this, of course, is going to really hamper their prevention efforts. I think in the West it is much more or a much larger part of the burden of HIV is carried by gay and bisexual men and by trans communities, and I think that that does kind of play into the way that HIV is perceived, some of that stigma and some of that shame that people might feel about it. I always have said, though, that I mean, if HIV was a disease which primarily affected white, cisgendered heterosexual men, we would have seen a very different response to it, and I think we would not be talking about the stigma which is still related to it now.

    Angela Walker: 21:33

    I think you're probably right and it's interesting that you mentioned Ghana, because about 25 years ago I went to Ghana as part of VSO, voluntary Service Overseas, and one of the placements I was on was working in a women's centre and we had a project where we were educating people about HIV prevention, but they refused to allow us to give out condoms and they it was number one abstinence. You had to preach, you had to talk about abstinence and our argument was let's be realistic, people are going to have sex. Let's help them do it safely. But they were dead against giving out condoms and it was so frustrating at the time actually it was a real frustration for us.

    Matthew Hodson: 22:20

    I mean that is you know some of the homophobic legislation.

    Matthew Hodson: 22:23

    I mean well, not only the homophobic legislation which is built, of course, often built upon colonial era laws, but I mean we've had homophobic legislation which was introduced here in the UK Section 28 actually kind of became law in 1988.

    Matthew Hodson: 22:39

    And although it didn't explicitly mention HIV within the wording of that particular clause, it was very clear that the idea that children needed to be prevented from learning about homosexuality in case they became homosexual was partly pushed by the idea that homosexuality was equated with living with HIV and with AIDS at that time. And so therefore, if you could prevent children from becoming gay, then you could prevent them from potentially acquiring HIV. Of course, what we know is that actually you can't teach children to be gay, but you can teach children that it's okay if they are gay, and that's why it's so important that we have those kind of role models, we have those kind of examples of people who live full and productive lives, and I think that that parallel between being gay and being HIV positive I think is really powerful for me, because I remember when I was young and gay there was like nobody on television who was gay, or hardly anyone on television we had, like John Illiman on Are you being Served or something like that, but I mean, it was really-.

    Angela Walker: 23:52

    It's like a caricature, really, wasn't it? Yeah?

    Matthew Hodson: 23:55

    I mean, I thought being a homosexual meant that you had to be really camp and I can tell you, the first time I ever went to a gay club and realized that actually all those men with mustaches and czech shirts were actually what homosexuals looked like. At the time I was delighted, mean, this was a big thrill for me. But you know that lack of kind of those kind of positive role models of course then meant that it was very easy to be homophobic because you didn't know what gay people were like and all you were fed were these cliches and these stereotypes and perhaps what the tabloid press told you about homosexuals. And then, of course, when people started coming out as lesbian or gay or bisexual or trans and you know that you have lesbians and gays and bisexuals in your workplace and in your family and in the places where you worship, then it's much harder to hold on to that homophobia.

    Matthew Hodson: 24:45

    And I think we're in the same place now with HIV is that if you don't know people with HIV, of course it's very easy to hold on to all of those old prejudices and fears. But when you know people who live with HIV, it's really clear that we live like long, healthy, productive lives and we're just the same as anyone else. So it's much harder to hold on to that prejudice, and that's why I think it's so important for me who is able to be open about living with HIV, to be so, and be so shamelessly and blatantly and brazenly, so that I can help to dispel some of that fear and ignorance which leads to stigma.

    Angela Walker: 25:20

    And I just think it's brilliant because you are so positive and healthy and happy and, like you say, shameless about it. Why should you be ashamed? You shouldn't. So it's a really powerful message for young people, I think, who might. They might worry that they might need testing and they're too anxious. How can they find out more about you know, getting checked out and staying healthy and stuff like that?

    Matthew Hodson: 25:43

    well, inevitably, I'm going to say that the best source of information about HIV is AIDSNAP, and I mean not only do we do lots of news coverage, but we also have all of the information which anyone will need to have about testing, about treatment, about what to do if you have been diagnosed with HIV. So I mean it's a really good place to start. I would challenge people to find a sensible question which isn't answered on that site.

    Angela Walker: 26:08

    Brilliant. And of course, we can also find you on Twitter as well you can find me on twitter.

    Matthew Hodson: 26:13

    You can find me on instagram and on blue sky and threads now as well it's all everywhere, all over, all over the net, brilliant.

    Angela Walker: 26:22

    Thank you so much for talking to me and I just think it's amazing that you know the medication has come on with leaps and bounds and let's hope that, you know, the prejudice kind of dies out as well, because I think it's really important, as you say, that more people just come forward and get themselves checked out and make sure that they can stay healthy yeah, I absolutely agree and I will carry on fighting until we have eliminated stigma thank you so much for joining us today.

    Angela Walker: 26:51

    Thank you, you've been listening to Angela Walker in conversation. I hope you've enjoyed the show. If you have, please take a moment to subscribe, to rate and review it, and you can find more information about other stories I'm involved with on my website, angelawalkerreports. com. Until next time, goodbye.

  • Angela Walker:

    Body image issues related to weight and appearance are now prevalent on a global scale, causing widespread mental health pressures. I'm journalist Angela Walker, and in this podcast, I talk to inspirational people and discuss under-reported issues. My guests today are boudoir photographer Alexandra Vince, who says she helps women feel empowered through her photography, and we're joined by Kate Richmond, who had extensive corrective surgery. Thank you both for joining us today. Alexandra, let's talk to you first. How did you get into boudoir photography? Tell us about your journey.

    Alexandra Vince: 0:43

    Yeah, I was studying photography at university. It was a fine art photography degree, so we did a lot of nudes and sort of fine art nude portraiture during my studies. I then graduated from that degree into a world of general portraiture and found that my work, especially with women, had the ability to give a real boost. I sort of learned a lot about the power of taking a good portrait of somebody and how that can really help, and then I came up with the idea in 2002 of opening a studio that specialised in doing just that for women, which was an opportunity for women to have portraits full body portraits where they get to see themselves in, in, in, you know, all their glory and get a better perspective of their body shape.

    Alexandra Vince: 1:33

    I'm passionate. I'm really obsessed with helping women feel more body confident, and my my tool, if you like, is my camera, and I'm able to show people a really flattering perspective of their body through this genre of boudoir photography. So I've been actually doing it for 22 years now and my company for your eyes only portraits photographed over 20,000 women during that time, not just me doing that behind the camera, but a collection of different photographers. So it's been a very interesting journey because obviously over such a long period of time, I've seen, I've witnessed lots of changes in the industry changes in photography, changes in body image and obviously along came social media with all the precious stuff that brought with it.

    Angela Walker: 2:18

    So how many of your clients, would you say, have got problems with their body image?

    Alexandra Vince: 2:24

    I think a lot of women feel disconnected from their feminine. They feel, you know, at odds with, with things that make us women. You know our curves are, you know the way that our flesh is and our skin is. You know scars, cellulite, all those things. They feel. You know that they have to apologise for, for what is normal and beautiful, and they disconnect with their feminine side, they sort of lose perspective of who they are and I'd say that bad disconnect that they have with their bodies. I've witnessed a lot of that and I'd say most of my clients have had some sort of disconnect.

    Angela Walker: 3:04

    As a woman myself, you know I've had two kids, one by cesarean, I've got the scars to prove it and it does make you feel different about your body, like we're changing all the time. The way that my body looks and feels is very different now from when I was 20. I mean, kate, tell us about your body image struggles, because I know you know you've had difficulties in the past. Can you talk us through your experience?

    Kate Richmond: 3:30

    I don't think that probably my body image issues are any different to most people's. To be honest, I would say I was always very unhappy with the way I looked generally through obviously not through social media such because that wasn't really such of an issue until I was a fair bit older. But I have realised, having lost a lot of weight, that you tend to in your happiness and future happiness, on X weight or X size, and I found out through losing a lot of weight that that isn't the way that you do it. There isn't this golden chalice waiting at that size 12, because I got to that size and probably hated myself more than I did before, because you still see the faults and I think it's a lot of these. Through comparison, you see other people on Instagram and people look perfect and if you're always aspiring to be perfect, you're never going to be happy.

    Angela Walker: 4:36

    I mean, you lost a lot of weight. It was a eight stone that you lost, wasn't it? Yeah, how did you do that? Just talk us through that journey.

    Kate Richmond: 4:45

    I ended up doing it through a competition essentially, which is possibly not the best way to do it. There was an online personal trainer who ran a 12 week competition Every 12 weeks. During those 12 weeks you submit, you submitted your photos and your measurements and at the end of those 12 weeks, it wasn't who'd lost the most weight, it was who he said had progressed the best, won a £10,000 holiday voucher. And I did four of those challenges back to back and never won one.

    Angela Walker: 5:18

    And then, after you lost the weight, you went on to have corrective surgery, .

    Kate Richmond: 5:24

    You can't get rid of eight stone of fat and water without looking like a deflated balloon. So although, yes, body size was smaller, the scales were looking good. I had all this excess skin. So I had an extended tummy tuck, so I had a half a stone of excess skin removed from my stomach. I had breast uplift and reduction, and that also equaled the size as well, because I had one that was a E cup and one was a C cup, so I have a matching pair now, and I also had my arm bin go wings removed. So I had that done.

    Kate Richmond: 5:59

    The last thing I had done was when I'd lost all the weight, all of me got smaller, apart from my thighs. My thighs said exactly the same, and then I was diagnosed with a condition called lipidema, which is horrible because it's basically fat which is resistant to diet and exercise. You won't go any smaller. You can't do anything other than surgery. So at one point my waist measurement was smaller than my thigh measurement. So then I had the first of two planned lipidema surgeries, which is like a gentle form of liposuction, and they took four liters from the front of each thigh. That was amazing, very painful but amazing. But then I went on and ended up with the blood clots on my lungs, so I didn't have the second one of those done. I'm done now. I am done with surgery. I have accepted that there is no perfect body and I'm happy with the one I've got now.

    Angela Walker: 6:47

    Well, I'm pleased to hear that. But what was it like to lose all the weight? So did you feel like I've reached this target weight and I'm still not happy. And then I'm having this surgery and then I'm still not happy? At what point did you kind of think, yes, I am okay as I am?

    Kate Richmond: 7:05

    It was probably a combination of the, the scare with the blood clots that made me think my body's had enough of surgery. We're done with that now. But also I there was. At the end of each challenge we had a night out like because it was a nationwide fitness challenge. There's a night out and I went out this night in Bristol in a size 12 dress and looked on reflection. I looked amazing, but I spent the entire night even in a nightcloth, wearing a massive coat, because I was so ashamed of how I looked and at the time it didn't register with me.

    Kate Richmond: 7:45

    But I would say maybe a couple of years ago, incidentally, when I had my first sheet with Alex, I looked back on my photos on Facebook memories and I thought Do you know what? There was nothing wrong with me then, but I remember feeling horrific and just yeah, something just clicked in my brain and it can't be chasing things. You can't wait to be happy with yourself. It all comes from a core of just self-acceptance now, where you are now, because there's not happiness waiting to happen for you. You have to make it happen now.

    Angela Walker: 8:24

    There was a scientific paper out last year and it was called Body Image as a Global Health Concern and it talks about body capital and the extent to which people are encouraging people to invest in their body and it's about the theory that certain bodies hold more social power and the more money we've got, the more we've got to spend on looking good. Does that theory kind of resonate with you, Alexandra?

    Alexandra Vince: 8:50

    Yeah, I mean, I think it's been an interesting journey with social media because I see that early on with the influences, they were models and the way that they looked was a particular way, whereas there's now more of a movement away from that sort of model look and, because of the broadcasters and because of the information that's coming out from people on social media, they're talking more about how different they are, how comfortable they are with their body or what they're doing to keep fit and how important mental health is. So it does resonate, but I think that I do believe that I'm also witnessing a shift in that now.

    Angela Walker: 9:36

    You talk about that in your book, don't you, "Queen of Boudoir? About the impact of social media and cosmetic surgery and how there has been sort of this change over the years since you've been working.

    Alexandra Vince: 9:49

    Yes, I think people just generally are looking at themselves much more than they used to. People are on their phones more, even as business owners, you have to turn up on camera video. You have to look at yourself and be much more aware of how you're looking all the time. I think that it's affected people. People used not to go to work and have to look at themselves and a reflection of how they present to the world constantly and I think it has affected people.

    Angela Walker: 10:23

    I can definitely relate to that. Working in TV and even now we're doing this video podcast, I've done my hair and makeup beforehand because we do feel like we have to kind of portray a certain image, don't we and I know that higher income English speaking countries we have this adherence, they say, to unrealistically slender and muscular bodies. It's like we're aspiring to be gods and goddesses and we have to be like the perfect ten or, you know, like a he-man kind of shape. Alexandra, how does your experience in photography I mean, what role does photography play in? We talked about social media, but it's not just social media, it's magazines, it's photographs in magazines as well are showing us these images of people with the perfect body. I mean, how, to what extent is that the cause of the problem?

    Alexandra Vince: 11:18

    I think that's part of the problem, but I think that it goes right back to when you're a child. So think about your Barbie doll, think about the images that we see and we're shown to aspire to as children, and I think pictures in magazines yes, they've definitely impacted our view of how we should look, but there is, and that's obviously been, a negative, but I do feel, on the positive side, that we are starting to embrace difference and individuality a lot more and with voices from people who have differences of appearance, you know standing up strong and saying you know I'm confident and powerful and you know I have a voice. I think that's countering this early effect that you're talking about. With the magazines and the imagery, and even in TV commercials, I think we're seeing different types of models and actors.

    Angela Walker: 12:09

    They're using people of all different shapes and sizes now, which is really refreshing, and there's some like online adverts for tights and clothing and things like that, and I think we are maybe seeing a shift. What about your photographs, though? I mean, some of them are really. They're beautiful pictures, but they're quite sexualized, aren't they? People wearing not very much naked in some of them, and they're very sexy. Do you ever worry that your pictures are almost perpetuating this kind of image that women have to be a certain way and sexualized?

    Alexandra Vince: 12:45

    That probably comes from my own personal view that your sexuality is a large part of who you are and your femininity and your sexuality are a huge part of your personality, and I don't believe that that's something that people should just park and put in a box and keep under the stairs. I feel like my portraits in power people. They are sexy, but they help people to realize that, whatever their shape or size or age, there's an energy to them, a sexual energy, a feminine energy, and I see that as being really important. I think that's a really important connection that people should maintain going forward, and I'm seeing more and more women in their 50s, 60s and 70s having photo shoots because they don't want to lose that sexual side of themselves going through menopause, or maybe they've been in a long-term relationship where they feel unseen, unattractive, and when they start losing that part of who they are, that is quite a big chunk of who they are. It's an important part of who I believe we all are.

    Angela Walker: 13:45

    Kate, how did you go from being a woman who was you know is it fair to say you hated your body in the way that you looked to so much that you went on this serious diet. You had a lot of surgery. How did you go from being that woman to someone who went along to Alexandra and took all their clothes off and boudoir photo shoot?

    Kate Richmond: 14:07

    That's a good question. I started working with a mindset coach in lockdown and it became a bit of a challenge to myself. We had to set goals and we had to do things that made us uncomfortable, and I can't think of anything much more uncomfortable than going to a complete stranger and standing completely naked in front of them. I was quite lucky in that I'd been aware of Alex's work for a long, long time. I was first made aware of it before my first marriage, but it was always a pipe dream. I knew her photos were incredible, but it was something I'd never could have done.

    Kate Richmond: 14:43

    And then, in lockdown, through social media, found Alex again and saw that she was doing some media shoots. So the deal was, you know, come down, have a shoot, but I'm going to use your photographs. I thought, oh yes, that is very uncomfortable. So, yeah, that's how it happened. It was just me forcing myself out of my comfort zone An amazing thing to do, and I was lucky enough to go with a couple of friends as well. I'm very confident in all aspects of my life. I walked into Alex's studio not even to the studio, into the reception area and I just burst into tears. I was absolutely petrified because it was so, so far out of my comfort zone. It was awesome. It was amazing.

    Angela Walker: 15:24

    So what were your expectations going in and how did you go from, you know, crying in reception to taking your clothes off and having these amazing photos done? What did Alexandra do?

    Kate Richmond: 15:35

    She is magic. She's just got this energy around her which makes you so incredibly comfortable and, without it sounding in any way cliche, you honestly, you forget, you don't have anything on. You just stood there shouting away and nobody cares. She's just brilliant. I've had similar photo shoots that have been gifts like boo to our shoots, and I felt so awkward. One of them I came in with a massive migraine because I felt so awful about the whole thing, but it was a gift and I felt like I had to go. So that's another reason I was dreading going to see Alex. But she's awesome. She makes you feel a million dollars.

    Angela Walker: 16:14

    What do you do, Alex, when someone comes in for a photo shoot and they're crying in reception? How do you convince them to come in and take their clothes off? And let you take photos of them?

    Alexandra Vince: 16:25

    I like to keep people busy. It's about taking somebody out of their mind, getting their body to do something. So in this case it's very choreographed poses. So they are. I feel like they've done an aerobic workout, where the lady at the front in her leotard and you're all there doing the thing. You don't really think about yourself in your leotard, you think about what she's doing and what she's telling you to do. So what I'm basically, how I'm helping people is because I'm putting them in a very safe environment. I've got this black box studio and then I keep my client busy by directing them through about 90 minutes. So it's physical, it's choreographed, it's relatively fast-paced and physical and it's a process where they're lifting and arching and moving their body and I actually call them power poses. So what they're doing is they're telling their brain I am strong, I am powerful. Moving a shoulder forward, standing in particular postures, really does, I believe, send messages to the brain. So that whole process is uplifting in itself.

    Alexandra Vince: 17:34

    Before people have even seen the photographs, they feel that they've achieved something. They've stepped out of their comfort zone, they've followed very clear and confident direction and they've ended up naked. And then, obviously, then you have the resulting photographs afterwards which are artistic and tastefully nude portraits. They wouldn't have seen their body in those particular postures before, they've never seen. Most people have not seen a full length, a full body photograph of themselves naked. I mean, you might have some pictures taken on the beach. So if you're on the beach, you're in a bikini, you're sat there somebody might take a picture of you and you're sat on the sand eating an ice cream and you're all scrunched up. What I get people to do is stretch and lift and arch and move their bodies in ways that they've certainly not been photographed in before. So that whole process, it's just, it's very uplifting, liberating and makes people really happy, and that's what I want to do.

    Angela Walker: 18:34

    That's lovely. So, kate, how did you feel then, like by the time you finished doing the photo shoot, how were you feeling about your body? And what about when you saw the final pictures?

    Kate Richmond: 18:46

    At the end you're absolutely buzzing. It goes so quickly and you just want to do another one, so you want to book in for another one. You're so used to looking at yourself in a mirror and picking fault and seeing the bits you don't like that you don't focus on anything else. But on Alex's photos there are no bits that you don't like. It was weird looking at it because I was like, well, that can't be me because I don't look like that. It's just amazing.

    Angela Walker: 19:14

    Kate, you work in aesthetics now, don't you? So you must have people come to you every day basically saying I'm not happy with the way I look.

    Kate Richmond: 19:25

    Yeah, I've got. You can't see it, but it's an enormous mirror at the side of me and it's part of my diagnostic tool because I need to know how that person feels about themselves. I have to be very alert for any kind of body dysmorphia, things like that. So I would say a good 70% of my patients, if not more, make them sit in front of this mirror, and a lot of them you can see them trying to shy away and they won't look or they'll just say I can't sit there, I can't look at myself, and that's so wrong. A lot of people go what do I need? And my opening line with all of my patients is nothing, you don't need anything that I do. The only thing you need is SPF every day. Other than that, you're perfect as you are. There's nothing wrong with you.

    Kate Richmond: 20:13

    I'm a terrible saleswoman, but it's so sad that people think they have to be fixed and whilst, yes, I do a little bit of work, I will never change anybody's face. I will enhance it and I will freshen them up a little bit, give them a bit of a glow, that's fine, but I'm not in the business of changing people's faces, and anything I can do that makes them feel better. It's so nice when they're, because I'm a dentist, actually that's my strictly my profession. Nobody wants to be there. They don't dance in and they don't dance out again. Sometimes they dance out. But here people want to be here and they cry in a good way here, when you're like, oh my God, you've never looked so much better. And that's what I want, and I think that is what Alex, can do with a camera.

    Angela Walker: 20:59

    You've been through so much. What's your message to women who are, you know, having body image struggles, who are feeling down about the way that they look?

    Kate Richmond: 21:11

    You have to start with accepting where you're at now and it's fine if you want to go ahead and change that for whatever reason. But you can't hate yourself into a better body or a better mindset because you've got to start where you are and accept that's where we are and there's nothing wrong with that.

    Angela Walker: 21:32

    When I look in the mirror and I think, oh, I've got another wrinkle today. I didn't notice that one till today. And I have to say to myself well, do you know what? I'm never going to be any younger than I am today, so I might as well just try and embrace the way that I look right now, instead of wishing that I looked the way that I did 10 years ago. But it is hard, isn't it? Alexandra? How surprised are you that body image is now being cited as a global mental health issue.

    Alexandra Vince: 22:02

    I'm not surprised at all, but I think people need to learn how to switch that up and I firmly believe that action is a step towards fixing that problem. I think that things like changing where the mirrors are in your house and understanding more about lighting, and understanding more about how you turn on in the world and how people perceive you what stands out to other people is a good thing to do. Social media and imagery around us doesn't help, but I do feel, on a positive note, that moving forward, having a photo shoot is a good idea because you get to see your body in full perspective, as opposed to focusing on small parts of your body that you don't like. So you mentioned that you noticed a wrinkle, a new wrinkle, but the wrinkle doesn't arrive up the stairs before you do. The wrinkle doesn't arrive through the door before you do. You turn up as a whole being, your energy, your character, your sense of style, everything about you, not those tiny little details, and I think when people get to see themselves and understand that, they are a whole package. And I want to tell you a little story about my daughter. So my daughter was born with cleft lip and palate, so when she was born, she had a large hole in her face and we've been on a massive journey together through lots of surgeries and hopefully she's got two more operations this year and then that'll be it. But during secondary school she'd have a bad day at school and so she has some scarring on her lip or top lip and her nose here.

    Alexandra Vince: 23:43

    And I took a flower out of one of my vases and I crushed one of the petals to damage it and then I took the stem out and I showed it to her and I said what do you think of this? And she said, yeah, it's lovely, mum. And I said, yeah, but can you see this petal's broken? Yeah, but it doesn't matter that the petal's broken, because the whole stem is beautiful, isn't it? And I said well, that's like you, sweetheart, you are the whole stem. You're not just the petal that's got a little scar and you're not your wrinkles, you are your whole body and I think that's why a whole body photoshoot I know it's called Boudoir photography, but I think that's why a whole body photoshoot's really good for you, because you get to see your body in all the different ratios of your body, your leg lengths to your shoulder width. It's just really good for you to see that new perspective of yourself.

    Angela Walker: 24:37

    I love that story and I love that way of looking at ourselves as a whole and not just the imperfections, and letting those kind of take over our perception of ourselves.

    Angela Walker: 24:48

    Last year, the House of Commons Health and Social Care Committee produced a report on body image and they urged the government to introduce a strategy to tackle it, and they want to see an education campaign about self-worth and body positivity. And I'm really interested in that because I've got a nine-year-old and she said to me before now oh, mummy, I'm too fat. And that really upsets me actually, because she's not fat at all, she's beautiful, she's a growing girl, but somehow something is getting to her and we never talk about waiting in our house or people's sizes or shapes or anything, but somehow in her circle of friends, in her school, in her world, size matters and that really worries me. So what do you think, Kate, about the idea of the government introducing some kind of strategy to promote, you know, positive health issues and to let people know that being underweight is a serious health issue as much as being overweight?

    Kate Richmond: 25:58

    I'm not sure where you could start with that, I think, because it's so deeply rooted in everything. It's just accepted, I think, that thin is healthy, which I don't necessarily agree with. You know, I'm still classed as overweight. I don't drink, I don't smoke, I go walking every day, I go to the gym four times a week. I'm probably an awful lot healthier than a lot of skinny people out there. But I just think it has to be a whole thing that people deal with and people have to accept different shapes and sizes. Like Alex has said, it just comes down to acceptance. But I don't know where and if you'd begin to do that when there's such a massive stigma attached to that fat word, where fat really is just a descriptive word, isn't it? Tall, short fat, but it's inherently an insult to say fat.

    Angela Walker: 26:51

    Alex, where do we start, Like, where can we start with communities, schools, society? What do you think?

    Alexandra Vince: 26:59

    Definitely schools. And also going back to the mental health issue and just positive mental attitude and the mindset, can't we teach our children that if they're doing the best they can and if they understand about health eating, they understand about the importance of exercise, not for aesthetic reasons but for mental health issues? When we do PE at school, should we not be told that this is great for you, for your energy levels and for your happy cells, or however they want to describe it? I just think if it's the emphasis on you know a healthy mind and looking after yourself, and if the children are taught you know, if you're doing the best you can in terms of your you know, fitness and eating and everything, then the body shape, the body shape thing, will just become secondary to that. I think children need to be taught that it's important to exercise and then that will follow through to people being more active. I guess it's the inactivity that's, you know, a problem.

    Kate Richmond: 28:03

    Exercise isn't a punishment. It's something that's going to make you feel good, rather than something that you're forced to do do lack of the field and the rain.

    Angela Walker: 28:14

    Yes, happy memories of cross-country running field covered in mud, oh God. And one of the things that was suggested in this cross-parliamentary group was a national eating disorder strategy, but also working with the advertising industry to encourage advertisers not to doctor their photos. So, you know, we see that all the time, don't we? All the glossy magazines? You know every photo and we do it with our own photos. Now, don't we? We do what you know. We put them through apps and things to make people look better. And what do you think about encouraging the advertising industry not to doctor their images or to certainly limit the extent to which they're doing it?

    Alexandra Vince: 29:01

    I think that's really important. I think that diversity and, you know, representation in the things that we surround ourselves with, not just in advertising, but also, you know, music videos, it's not just in magazines, I think it's social media, and there aren't the same standards and bodies, I think, representing social media images as there are with, like, say, for example, national television advertising. So what do you do with that when there's, you know that level of freedom, tiktok, and you know Instagram putting out these images?

    Angela Walker: 29:39

    Exactly. What can you do about TikTok when there's someone in another country who's promoting a really thin body image? I mean, there are some shocking accounts on YouTube and Instagram of people who are so thin and unhealthy, and how can we protect our children from that?

    Alexandra Vince: 30:03

    Just about. I think, really, it's just important to talk about it openly with our children and for it to become it's just a level of understanding, isn't it? And you know, if somebody's really really thin, you know that's not a bad thing, it's not a really good thing, it's just how they are. It's an end to end to have less judgment about how people look generally, you know not to say, oh, that person's fat, so they must be, you know, inactive and boring and whatever other might think. It's just to pull the way you know, pull the level of judgment right back, rein that in. I think that's what we should be teaching people.

    Angela Walker: 30:38

    It's really interesting that we're talking about this today, because a colleague of mine mentioned on social media the other day that someone approached her on LinkedIn and said oh, look, I can see that you're overweight. Would you like to take part in my fitness program? And she was appalled because, you know, this person was giving this unsolicited advice, saying look, you know, you're too fat, I can help you. And it reminded me of a time a few years ago when I was very slender and I was doing a lot of running and someone said to me oh, have you, have you got anorexia? And I was appalled and I just think, you know, I was healthy but thin. And this person is healthy but bigger. And maybe we just need to change the way that we look at our bodies and realise that there's a whole spectrum and that we can be healthy on the thinner end or on the larger end.

    Kate Richmond: 31:41

    Yeah, Alex has got that with the judgmental thing we I caught myself last summer. There was a girl, probably she was probably about 15, 16. She was walking down the street. She had cycle shorts and a crop top and a real big roll on a midriff and I thought, oh, she shouldn't be wearing that. And I thought, well, hang on, she's not just happily minding our own business, she knows what she looks like. Who of the two of us has an issue here? It's me that we've got so much more to us than how we look.

    Angela Walker: 32:11

    Hey, talking about this link, then, between the way that we look and the way that we feel and our mental health, when you were having these times, when you're really struggling with your body image, how was your mental health then?

    Kate Richmond: 32:26

    I would say generally. I've had an awful lot of awful things happen to me over the last 20 years or so, and so I am quite a resilient person. But when you can't go to a normal shop and just buy an outfit, when you can't look forward to wedding dress shopping because for someone who is in a bigger body, that is an absolutely harrowing experience. It does, it gets you down and it's not a nice place to be. But I do think there's definitely an upturn now in acceptance across the board. So, whilst I feel I went through a lot of that on my own and it did really really get me down, I think maybe things are getting. I'd like to think things are getting a little bit easier for people now. I think they are a little bit more inclusive for things like that, but it does get you down when you feel, it makes you feel not good enough and not worthy, which is ridiculous, as we know, it doesn't matter.

    Angela Walker: 33:41

    When? How much did you weigh, kate? Can I ask when you were at your heaviest?

    Kate Richmond: 33:46

    I was 26 stone.

    Angela Walker: 33:49

    OK, and was there a sequence of events that led up to you putting on weight like that?

    Kate Richmond: 33:58

    Yeah, well, I was pregnant. My husband left me when I was eight months pregnant. He left me with £92,000 worth of debt that I didn't know I had and I had to repay every penny. I was raising a child of my own, doing a very stressful career. All of that it just piled on top.

    Kate Richmond: 34:23

    There's certainly a lot of emotional eating. It was comfort, I think, a lot of the time and that's a very, very, very hard cycle to get out of acknowledging that that's what you do, because it's all well and good doing the calorie controlled competition diet, but it was like 12 weeks on, 3 weeks off and go crazy in those 3 weeks. So I got into a very, very vicious cycle with that. That was not a great time either. So I wouldn't say for one minute I had an eating disorder, because I didn't, but I certainly had a disorder eating.

    Kate Richmond: 34:55

    So yeah, mental health-wise, I think it will affect you. Whether you're bigger, whether you're smaller, there's always that little nagging thing that you're not good enough and it's shutting that voice down which really helps. Eating healthily is a decision and it's a mission. Sometimes, isn't it Like? I've got friends who spend the whole Sunday neoprepping for the week. That's hard work, I think, making things easier for people and not being Supermarkets putting things on offer which are healthier options. You don't ever walk around Asda and it's the really healthy stuff on offer, is it? It's always the bad stuff.

    Angela Walker: 35:32

    That's true. Fresh fruit and veg can be quite expensive actually. Yeah, Alexandra, what do you think about this connection between the way that we look and the way that we feel and our mental health?

    Alexandra Vince: 35:46

    I think it's really important to look after yourself and see yourself as a vehicle, an engine, and I understand that some people are not in the right headspace where they can look after themselves or think about preserving their bodies or looking after themselves in a healthy way. There's lots going on in life and there can be some really tough times, so I'm aware that it's really important to connect mind and body and healthy eating and exercising and everything. But what I would be really interested to know is, obviously I do photo shoots and people who come to me with their issues have already gone on a bit of a journey. They've often gone on quite a big journey actually before they come to me because they're ready to make a change. But it's getting from having the issues where you're struggling to making the changes, that I'm not quite sure how we as a society help people do that without them reaching out, Because the mental health care support is there supposedly, but it's not that great. In communities, women can help each other more.

    Angela Walker: 37:03

    And did you know that there's a link between body size and salary? Women who are slimmer earn up to 20% more than women who are larger for doing the same job. Did you know that, Kate?

    Kate Richmond: 37:16

    No, I was not aware, but I can imagine. I can see how it would happen, because I do think people are judged on how they look and I do think that larger people are perceived as less able and lazy, and I think that that would happen. I can see how that would happen.

    Angela Walker: 37:41

    I guess that comes down to like societal norms, really and again these ideals. And the problem of body image is worse in the white Western countries than in the rest of the world. Did you know that, Alexandra, and does that surprise you?

    Alexandra Vince: 37:59

    It doesn't surprise me, because we're all looking at our phones, aren't we? And looking at ours, whereas you know, is that happening? Is that happening in other parts of the world? I don't know, but I doubt it's as much as it is around here.

    Angela Walker: 38:15

    So yeah it doesn't surprise me at all. It'll be interesting to look back in a few years' time, in 10 years, and to see if we've moved on at all and how people feel about their bodies, if it's the same or better or worse. Let's hope that there's going to be some kind of improvement. It's really interesting that you mentioned Barbie dolls earlier, alexandra, because my daughter's got a couple and you know they come in all different sizes. Now they're not all just skinny minis and she's got some that are plumper than others, which is really nice. So when I saw that in the shops I was really pleased actually that at some level there is hopefully a move towards a healthier outlook when it comes to body image. So what final thoughts or messages would you like to leave the listeners with about body image and mental health, kate?

    Kate Richmond: 39:05

    I would just say the way you look is the least interesting thing about you and accept where you're at now. And just it sounds so cliche to go well, love yourself, but you've got to. You have to accept how you are, because that's how you are and the key to being happier in life is just acceptance, I think.

    Angela Walker: 39:27

    Alexandra, what do you think?

    Alexandra Vince: 39:31

    I'm all about helping women to get a better perspective of themselves. So if you understand your body shape and you're at peace with it and you're keeping your mind as healthy as possible, I think the message is really just if you're doing the best you can and you're aware and you're making a difference and you're taking action to improve your mental health and your view of your body. Because, also, let's not forget that our views of our body will affect our daughters or our kids. It's important that we, as mums, stay positive and have positive affirmations about our body shape, to pass that on. So do everything that you can to build your own confidence. So the real power suit is your body. It's really important that you connect with your body, you accept it. I can help people do that through my photography, but there are lots of other ways of doing that and it could be spend more time naked. I don't know.

    Angela Walker: 40:28

    That's a nice note to finish on everybody spend more time naked! Alexandra Vince, Kate Richmond, thank you so much for joining me. It's been lovely to talk to you, thank you, thank you, thank you. I'm journalist Angela Walker and today I've been in conversation with photographer Alexandra Vins and one of her many subjects, kate Richmond. I hope you've enjoyed the programme. Please do share it, rate and review it, and check out my website, angelawalkerreportscom. Until next time, goodbye.

  • ANGELA WALKER (00:00.)

    It damages the seabed, it kills animals and plants and releases carbon which can contribute to climate change. I'm talking about bottom trawling, dragging a fishing net across the seabed, indiscriminately catching everything in its path. I'm journalist Angela Walker and in this podcast I talk to inspirational people and discuss under -reported issues. My guest today is Jean -Luc Solandt from the Marine Conservation Society. Welcome to the

    Jean-Luc Solandt (00:30.768)

    Thank you very much for having me.

    ANGELA WALKER (00:32.846)

    First of all, what exactly is bottom trawling?

    Jean-Luc Solandt (00:36.72)

    It's a process by which a powered ship fishing boat pulls a net along the seabed by the use of these warps which are metal ropes to take the tension of the net and that is held open by either otter boards which are these big cardboard, wooden or metal boards that hold the net open at the mouth of the net and it drags along the seabed catching the fish.

    ANGELA WALKER (01:03.374)

    And what's the scale of these things? I'd like to work out how big are they?

    Jean-Luc Solandt (01:12.656)

    they can be tens and even up to 100 plus meters wide, about 10, up to 10 meters in height. The length of the warps going out to the nets can be hundreds of meters in length. And then there are other forms of other seabed disturbing types of line that are dragged along the seabed to a static net called Danish or Scottish seining and that can be

    up to four kilometers length of rope that is just used to disturb the seabed that move the fish into the net. So it's an industrial scale of fishing.

    ANGELA WALKER (01:42.158)

    They are absolutely huge. It's almost hard to comprehend just how big these nets are. When I first started reading about it, I was quite shocked. So it almost stands to reason that they are causing a lot of damage. But just talk us through what is happening when these things are dragging across the ocean floor.

    Jean-Luc Solandt (02:08.176)

    So first of all, it crushes marine life. So even though the problem with some of the fishing industry and the way we reported the damage of these things is that, of course, a lot of the marine life is left destroyed on the seabed and it's not therefore coming up in the net to describe the damage that is occurring. And it creates a lot of sedimentation. So the sediments that are stirred up on the seabed bottom can be

    from sediments that are buried down to 10 or even 20 centimetres into the seabed and those are locked carbon stores, so that occurs. And also some of the chains that are required to weight down the net actually on the seabed dragging along the bottom in turn cause damage. And the worst of all is perhaps scalloped dredging, which is what it is. There are these six inch teeth that are designed to...

    ANGELA WALKER (02:42.24)

    and also the chains that are going to break down and actually receive the dragging force. It's the first one to have a small, dredging force.

    Jean-Luc Solandt (02:57.84)

    with spring -loaded dredgers to bounce in and out of the seabed to stir up the scallops to then rise up to about a foot into the water column and then be caught in a chainmail bag behind them. So it is industrial ploughing of the sea to a certain degree.

    ANGELA WALKER (03:15.47)

    And the damage that's occurring, how bad is it? I mean, how long does it take to recover? What's the sort of scale of the damage itself?

    Jean-Luc Solandt (03:23.344)

    Well, the sad thing is over the course of industrialisation of this type of technique, it's been going on for about 150 years. 150 years means we've pretty much dragged every single bit of the seabed off the UK and off Europe in our continental shelf. That means in waters less than 200 metres deep, because those are feasibly and economically and industrially accessible to these sorts of fishing, and that's where the most fish are. So the damage has happened.

    in our fathers and our grandfathers and our great grandfathers time. And now what we're seeing in the marine environment is probably a small fraction of the biodiversity and the remnant productivity of the ocean's wealth. A paper came out in 2010, which is quite a long time ago, describing the fact that we probably lost about 95 % of our fish in the North Sea from this mechanised form of fishing. So the damage is done in our forefathers time. Therefore, how do we attribute blame?

    ANGELA WALKER (03:54.336)

    Thanks for watching!

    Jean-Luc Solandt (04:20.24)

    It's really difficult if society does something in a particular way, like burning fossil fuels and doesn't consider the impact of it from 150 years ago, who do we blame? Maybe we should change our narrative of this saying, let's just sort the issue out rather than look at individuals to blame. So the way we've done it in society up to now is to try and create these vast protected areas that should eliminate this sort of activity or try and reduce the impact of the heaviness of this equipment and the intrusiveness of it. And...

    ANGELA WALKER (04:33.614)

    Thank you.

    Jean-Luc Solandt (04:49.84)

    to make it more selective to catch the fish we really want to catch. Those are what's happened probably in the last 10 to 30 years to more or less effective means.

    ANGELA WALKER (04:54.4)

    So you're talking about a reduction, a loss of 95 % of the fish in the North Sea over the last 150 years. So are you saying that really the lack of fish has sort of become normalized? We're used to the fact that there's a lot less in there. Are we just sort of accepting that that's how it is now?

    Jean-Luc Solandt (05:22.32)

    That's a really good point. What we are facing as every generation is born and grows up is something called the shifted baseline of perception. So your baseline when you were born, maybe 40 years ago, mine 53 years ago, we saw the ocean and the world looking like something. I mean, I grew up with the Amazon being almost pristine and since then we've seen it being cut down considered probably about 30 % of it's gone. So my kids born.

    ANGELA WALKER (05:41.23)

    Thank you.

    Jean-Luc Solandt (05:58.844)

    science, these these these analyzed data suggests that fishers could go out with a net, just throw it over the side of their boat without any steam power or petrol power in their engines and catch fish that the that would sort of be up to the gunnels, you know, almost sinking the boat, you hear about that with the herring fisheries, you hear about that with cod, with mackerel, and this does this does not exist anymore. So we've had to fish harder and harder as every generation comes into the fishery.

    And when we argue every December with our European partners about quota allocation, we're talking about the dregs of the ecosystem. And sort of if there's a 20 % rise from a baseline from the last 30 years, that to a fisherman 150 years ago would be derisable because we've just hammered the ecosystem so much in the last 150 years. So any increases perceived by the fishing industry to be a good thing, but ecologists look at it much more cynically and much more over the longer time scale.

    ANGELA WALKER (06:55.374)

    Of course, because you're looking at the bigger picture. It seems a lot of the damage has already been done. What's being done now to sort of mitigate that? And, you know, is there any possibility that the oceans can recover from this overfishing and this bottom trawling?

    Jean-Luc Solandt (06:58.716)

    . .

    Jean-Luc Solandt (07:16.43)

    Yeah, it's a really good, it's an interesting time to be around because I think in the last 10 to 20 years, we have seen a public and civil society and even political shift in the United Kingdom to deal with some of these issues. So I started working with Client Earth in about 2010. You probably heard of Client Earth because they take very successful air quality cases in London, for example.

    And they also worked with me in the ocean and we took a case to UK government that they weren't regulating their protected areas and making sure that the protected areas had bands for these sorts of fisheries in place. Since which time we've seen about 17 ,000 square kilometres of UK seabed protected from this sort of activity, which the public would have thought would be automatic when marine protected areas are designated. But a designation of a place doesn't necessarily mean

    such an activity is regulated, which I think is criminal, I think, in philosophy. We should have protection so the public aren't duped, perhaps, over what an area of the ocean should be. They would think automatically dredging or trawling would be eliminated. So it took us with Client Earth a number of years to make sure that that happened. And then the government started to make changes. And then, ironically,

    ANGELA WALKER (08:32.078)

    Thank you.

    Jean-Luc Solandt (08:39.9)

    since Brexit, which I don't think has been particularly good for society. One of the things that has been good for the UK is we've been able to control our fishing in our offshore marine protected areas. And that's been a vast change in approach since that time. And also outside of protected areas, there are mechanisms to make fishing gear lighter, as I alluded to earlier. So reducing that amount of metal, the weight of nets and make sure that they rise above the seabed. There are even some research.

    that's taken place in Dutch fisheries to electrocute fish into nets rather than drag them using weighted gear. But that also has secondary effects on other animals in the marine environment, you can imagine. So it is still a very, very coarse way of catching our food. We must think of it as indiscriminate because it just has these the ways of catching everything and then things end up dead on the deck. It's very, very difficult.

    to see the survivability. So, protected areas have had one course of progress, and then there is this technological solution to make the gears.

    ANGELA WALKER (09:47.598)

    and tell me a bit about the process. They drag the net across the seabed and then they bring the catch up onto the boat, I guess. But it is indiscriminate. So what happens to all the stuff that's been caught in the net? What would be in that net?

    Jean-Luc Solandt (10:05.468)

    Well, there'll be an element of the seabed that comes up depending on the mesh size. So that's the size of the squares in the net. Obviously, the smaller the size of that mesh, the more animals of a smaller size can be picked up, be they fish or be they invertebrates, so animals without backbones, perhaps similar animals that generally are stuck to the seabed, which are kind of like the trees and the bushes on the seabed. Now,

    Now those trees and bushes are really important and allow the habitat for other organisms to live, much like our own forests. So by degrading them and diluting them, you actually reduce the biodiversity and the functional importance of the seabed for it to maintain life and hold carbon and to strip the ocean of nutrients, which we need to do. But also the fish that come up and the invertebrates that come up like sponges, corals, small fish, shellfish.

    And you also get a lot of shrimp and other bycatch like that. That's sorted on deck into desirable species and non -desirable species. And those that can't be sold are simply heaved over the side.

    ANGELA WALKER (11:09.262)

    Dead.

    Jean-Luc Solandt (11:15.324)

    Yes, and there are some fisheries that are much worse than others. So we have a fishery for something called nephrops, which is our scampi. And the bycatch of that is something, it is very, very bad. I mean, it's more than the weight of the scampi that's caught on the deck. So, you know, there are alternatives. And, for example, there are in Scotland constant arguments between the potfishers, which are benign fishers, which target...

    ANGELA WALKER (11:24.75)

    you

    ANGELA WALKER (11:32.544)

    And they're all right.

    Jean-Luc Solandt (11:42.14)

    scampi by putting just a pot on the seabed with some bait in it and the scampi, the longoustine or the prawns, move to the pots and then they're just hauled up after a couple of days. Now those guys are fighting really against the trawlers that just hoover them up and kill everything else and we would like to see, and the Scottish government has been really bad about this, much more restricted zonation to protect that much more benign way of fishing for scampi than the harmful work practice of

    ANGELA WALKER (11:48.974)

    Mm -hmm.

    ANGELA WALKER (11:56.672)

    Hmm.

    Jean-Luc Solandt (12:09.766)

    harmful work practice of trawling for it. So there are some authorities have been better and some authorities have not been so good and I think the Scottish Government's been pretty poor at dealing with that issue for decades it's been a problem.

    ANGELA WALKER (12:16.59)

    Is there any way of telling when we buy fish how it's being caught? I mean I had scampi this week and I feel terrible because I've got no idea how that was caught. You know we know if we're having free -range chicken, you know, how can we tell if the fish that we're eating has been caught in an environmentally friendly way?

    Jean-Luc Solandt (12:39.718)

    Hmm.

    Well, the Marine Conservation Society does do a good fish guide and you can find out the capture methods of the stocks that you can see in the supermarket. So everyone should download the app onto their phone from the Marine Conservation Society and they can see what's being caught, how it's being caught, when they actually buy it in the marketplace. It is more difficult in supermarkets, perhaps in restaurants. In restaurants, they tend to be proud when they actually have dive -court scallops or pot -

    caught longer steam or scampi. But most of the scampi you'll get from an average place will be not only caught by trawl, but then it will be shipped off to China to be processed and then shipped back in a frozen form for us to eat. So we've also got to think of airmiles in the way we industrialize our seafood production, which is nowadays not really suitable for how we need to manage the planet.

    ANGELA WALKER (13:27.79)

    Gosh, that's another thing I can't eat now. But it's better to be informed and I should look into that app because that sounds really interesting. So you've talked about marine protected areas. Are they working? You said that.

    Jean-Luc Solandt (13:36.76)

    Yeah, I think so.

    ANGELA WALKER (13:50.35)

    Like, just it's taught me through it a bit because you said we've got these marine protected areas but it doesn't necessarily mean that trawlers aren't operating in them. That's so confusing. Excuse me. Sorry, bear with me a sec. Sorry.

    Jean-Luc Solandt (13:54.95)

    Absolutely.

    Jean-Luc Solandt (14:09.126)

    all right do you want to ask a question again once you've had your water for you

    ANGELA WALKER (14:15.054)

    It's just one of these ongoing things. I actually feel all right, but it's like a frog in my throat. Yeah. So you mentioned marine protected areas, but then you said that doesn't mean that trawling is banned in them. That's so confusing. Tell us a bit about them.

    Jean-Luc Solandt (14:36.134)

    So marine protected areas are set up via different laws, as you can imagine. People get together in rooms and discuss where would be a good place for them, where not. Does it protect certain amount of biodiversity? Does it protect things like good carbon storage habitats like seagrass beds and myrl beds? These are amazing plants that lock down generations worth of carbon in the soils and the seabed sediments. So.

    ANGELA WALKER (14:43.022)

    you

    Jean-Luc Solandt (15:02.95)

    we're getting more and more aware of what habitat should be protected. Now, when the designations happen, so you call something a marine protected area, it doesn't mean it regulates everything automatically. So if something is ongoing in an activity that's there prior to the designation, sadly, in our country, it doesn't mean it's stopped or immediately restricted. We at the Marine Conservation Society with so many other actors,

    know this, unlike the public. And we've tried so hard for many, many years to stop trawling in many protected areas. The most obvious ones being where the seabed is protected. So that would immediately suggest that trawling should be banned immediately. But it's taken us many, many years of, in a way, fighting with regulators and discussing with fishermen that this is unreasonable to us and to the long -term health of the ecosystem to protect

    perpetuate this activity. So, and because it's out of sight, out of mind, underwater, the public isn't so concerned if it were to happen on your local woodland or in your local park, but you saw someone going there with a dredger or a roller and just eliminated the habitat. That'd be uproar. That is not the case at sea. That's really why.

    ANGELA WALKER (16:22.702)

    That's a really interesting point that you make. And it brings me on to the thought of who is policing it and how. I mean, it must be incredibly hard to check if it's going on and to what extent.

    Jean-Luc Solandt (16:29.638)

    Yeah, there are various ways. In our nearshore waters we have in England, we're very lucky, something called the Inshore Fisheries and Conservation Authorities, 10 authorities dotted around the coast from Cornwall all the way up to Northumberland, that know they're fishermen, they know their fisheries that are taking place, and they also are able to put satellite technology on the boats to show where they are all the time.

    ANGELA WALKER (16:51.598)

    Thank you.

    Jean-Luc Solandt (16:59.59)

    And in a similar vein offshore, which is where there's much more international fishing, another agency called the Marine Management Organisation is looking at the activity of these vessels only using remote sensing technology as we call it or satellite technology. So that is basically a unit on the wheelhouse of the boat that sends a message every two hours in the case of offshore fishing or nearshore fishing much more frequently than that to a satellite.

    that satellite transponds the position of the boat and the speed at which it's moving, which is critical to the regulators ashore. Now, if those boats are moving at less than four kilometres an hour, four knots, sorry, should use the nautical term, they are deemed probably to be fishing because when you're trawling, you have to allow the net to go at a speed that catches the fish efficiently. And also trawling on a satellite chart.

    looks like a zigzag line because they go back and forth over an area that they think is productive, rather than a boat going from A to B necessarily goes in a straight line at a faster speed. So we can use these different attributes as to managing our activities at sea.

    ANGELA WALKER (18:12.974)

    Yeah, it's interesting when you see these aerial photos and the satellite imagery, it's quite obvious what is going on actually, isn't it? You can see the lines and the zigzags in the ocean.

    Jean-Luc Solandt (18:24.998)

    Indeed, and something that the civil society communities, these NGOs that we are, these charities like the Marine Conservation Society, we can use a really wonderful resource called Global Fishing Watch, which is set up in the United States to allow not only NGOs like ourselves, but also governments. The government of Indonesia uses this great web resource to map fishing activity and see it in real time.

    And then you can send authorities out to see where boats are and actually see if they're in the act of fishing within enforcement vessels or helicopters or planes and do overflight data and then possibly prosecute individuals if they continue to be acting suspicious or have fish caught in those protected areas. So that's the way the world's going with much more remote sensing technology. But it's the information from that global fishing work.

    resource is not prosecutable in court. It can be circumstantial evidence around something that has to be set up by government just for fishery surveillance, because that's a safety device that is actually pinging that data. So there's this tension still between civil society saying we know they're fishing and authorities saying, well, we have to use our official remote sensing devices to track them. So it's sort of like the problems do go on and persist. But

    ANGELA WALKER (19:23.95)

    Thank you.

    Jean-Luc Solandt (19:49.126)

    Nevertheless, we have got a way of policing our policemen, if you like.

    ANGELA WALKER (19:53.55)

    Well, at least we can see what's going on and maybe in future that will make it easier to clamp down on. Now you've been in this field for many years. You've seen progress, I understand, but let me just start that bit again. You've been working in this field for many years. Tell us a bit about what changes you've seen.

    Jean-Luc Solandt (20:14.886)

    What we've seen changes, most importantly, like I said earlier about this outer site out of mind, I think we really started to see the wonders of the sea. You are interested in it yourself. You just described your concerns about microplastics and the sewage overflow problems. I think society is starting to be concerned about the sea. It is, after all, 70 % of our planet and it has absorbed 90 % of our carbon that we've pushed out into the atmosphere through carbon dioxide.

    emissions. So people are really understanding if we don't deal with this issue, we really, really suffer as a species. So I think we've seen that change and that pressures politicians, which in turn pressures regulators to pressure the users of the sea to actually do the right thing. So definitely in about the 15 to 20 years I've been working in this work, I started making sure that these sorts of most damaging fishing activities, scallop dredging, weren't happening in our

    coastal waters with others. We saw sites closed in Cornwall, we saw sites closed in Plymouth. And then we started to work on a systemic basis by which we wanted to ensure that all regulators in the UK protected all the marine protected areas that were vulnerable to all these types of bottom trawling. And that started to happen in about 2012 to 2016. We saw inshore waters. And then, as I said earlier, Brexit allowed us the opportunity to manage the seas from six miles out to

    ANGELA WALKER (21:32.846)

    and we'll see you next time.

    Jean-Luc Solandt (21:38.15)

    200 miles and now we've seen progress in about, well the Dogger Bank which is an area here on the shipping forecast, is a bank which used to be land before the last glacial, the glacial meltwater. It was land up until about 12 000 years ago would you believe. So it's this shallow bank in the middle of the North Sea, it used to be called Doggerland and that is historically been fished and that was entirely closed.

    ANGELA WALKER (21:46.03)

    Hehehehe

    Jean-Luc Solandt (22:08.102)

    12 ,300 kilometres squared, which is five times the lake district, was entirely closed to all forms of bottom trawling in 2022. And we saw a 98 % reduction in fishing activity because of that closure, with some errant vessels sort of tweaking at the edges. That was the 2%. So we have seen successes. We must be positive. We must forge ahead because conservation could just look at itself and go, what difference are we making in the grand scheme of things? But if...

    If we don't try, we must try to resolve some of these issues and then start to see the productivity return and the richness return. And that inspires me and it should inspire everyone.

    ANGELA WALKER (22:49.486)

    what I was going to say. So it was only a couple of years ago that trawling stopped at Dogger. Do we know if the area's recovered at all?

    Jean-Luc Solandt (22:56.646)

    That's a good question. It's very costly to do the science to monitor the seabed. As you can imagine, you've got to go out 100 kilometres east of Hull on a research vessel which costs six to 10 ,000 pounds a day just to have at sea. And then you've got to drop the cameras onto the seabed and you've got to record what fish populations are there by using things called baited underwater remote video. So you put the bait on the end of a pole and have a GoPro on the weight and you see what turns up. So these are the sort of techniques we're using.

    And I know that some colleagues in a Dutch NGO, because it is in the middle of the North Sea, they funded such a research trip in November and they did record some interesting marine life in areas that had hitherto been trawling. But they hadn't been before the ban. So it's really difficult to compare the difference. I think we'll only see a difference in about five to 10 years when long -term restrictions of that sort of scale will start seeing fish populations go up and seeing the seabed life start to recover.

    ANGELA WALKER (23:55.022)

    Yeah, I'd love to know how quickly the seabed can recover after this kind of intensive fishing. I mean, at the end of the day, there are a lot of people making an awful lot of money out of bottom trawling. I know that you're pleased with the progress that we've seen and we're hoping to see more progress. How confident are you that, you know, that we'll see an end to bottom trawling eventually? Is that your goal? Is that your goal?

    Jean-Luc Solandt (24:18.63)

    Well, it would be a goal that's a reasonable thing to suggest as the evidence comes in of its secondary effects to the planet, the way the ocean functions, that carbon is definitely affected by it, be it the stuff in the seabed in sediments or living organisms that also hold and lock down carbon. Everyone forgets that in the debate. They're always obsessed with what's in the sand and mud.

    rather than the living organisms. So yes, we probably should, as a civilized society that looks at science and goes, well, if we started again, we wouldn't catch fish this way. So in that sense, what we need to do is go back to line fishing. We need to go back to static net fishing, which is where you put nets on weights, but don't drag them through the seabed, just put them down. But those, of course, have problems with bycatch of things like dolphins and sharks and seabirds. So.

    No fishing technique is really pretty devoid of its secondary impact outside of its target species. And that's the difficulty of it. With farming, of course, we can seed the ground and say we're going to have cabbages, we're going to have parsnips or whatever on this plot of land. And we know we're having this footprint impact. But the fishing industry would also say, look, 70 % of potential arable -use land on land is ploughed every year. And it's

    effectively a monoculture. So is there really a massive difference to what we're doing at sea and on land? Possibly not, but we need to protect the protected bits better. And we do probably see, I would like to see in my lifetime, what's left of it, a further reduction in the pressure from this fishing gear. But a complete plan globally or in Europe is unlikely, I just have to say politically and economically at the moment.

    ANGELA WALKER (26:15.95)

    Yeah, talking economically, of course, if it's harder to catch fish, because, you know, we're not using this intensive bottom trawling system, then surely that will push the price up for consumers. And ultimately, people don't want to pay more for their food, do they?

    Jean-Luc Solandt (26:20.358)

    you

    Jean-Luc Solandt (26:29.446)

    Yeah, that's known and a lot of the fishing industry is subsidised. Did you know that the fuel that the trawlers are using is subsidised by us? So we're paying the tax for the fuel. So where we're paying, I don't know what we pay, the tax at the pumps, maybe 20, 30, 40%. That is paid for by government to fish using these gears, which I think is not good.

    ANGELA WALKER (26:53.486)

    Gosh, so we're actually funding the bottom trawling out of the taxpayers' money.

    Jean-Luc Solandt (27:00.774)

    That is a truth that is unpalatable, I would suggest, given its effects on the oceans. And those subsidies also are in certain EU fleets in Spain. The subsidies extend to things like docking facilities, harbour, ports, freezer units. If you go to northern Spain, you can see these enormous, beautiful EU -funded infrastructure projects that support

    know, a fishery that is is reducing in its catch rates and its efficiency. So we need more regulation on restriction rather than keeping the thing going in its current form.

    ANGELA WALKER (27:36.878)

    Would you argue then that instead of subsidising bottom trawling, that the EU should be subsidising more environmentally friendly fishing methods, surely?

    Jean-Luc Solandt (27:47.942)

    Absolutely. And it's still the power of the botting trawling industry that lobbies the EU to keep it going. So I think power is where money is and money is where those big, big industrial trawlers exist. So I would go back on an earlier point that you said, I don't think there are a lot of money, a lot of people earning a lot of money, but there are a few people earning a lot of money that have a lot of power and that own a few big, big, big boats that

    They keep things going as they are. So and there's been a lack of democracy in the allocation of quota. We've heard about Greenpeace has done some excellent work and sees at risk some colleagues of mine to find out that lobbying goes on behind closed door with fishing industry representatives to the ministers that set the quota for fisheries that aren't in the interest of the average smaller boat fisherman. But that's more of an EU problem. In some ways, what we've done since leaving the EU has been more

    ANGELA WALKER (28:34.286)

    you

    Jean-Luc Solandt (28:46.054)

    helpful to our smaller scale fishers who are less impactful to the environment in British waters. And also, I don't know if you know, there's been a general restriction on sand eel fishing, which was then generally prosecuted by the Danes in UK waters as an announcement last month. So that means that we're protecting the bottom of the food chain. Sand eels are like anchovies in UK waters and they were hoovered up by the Danes to essentially act as fish meal for the fish farm industry.

    ANGELA WALKER (29:12.142)

    Sorry. Sorry. Hang on one second. It's good trouble it's not live isn't it?

    Jean-Luc Solandt (29:14.566)

    their process dried and turned into pellets.

    That's alright.

    Jean-Luc Solandt (29:27.91)

    That's alright.

    Jean-Luc Solandt (29:36.006)

    hahahaha

    ANGELA WALKER (29:40.078)

    the studio.

    Jean-Luc Solandt (29:40.326)

    So this is part of your, it's not part of your work for the BBC. Is this just your own interests, Angela?

    ANGELA WALKER (29:45.422)

    yeah no I've left the BBC but I wanted to carry on doing what I do and I thought I'd like to do sort of like long form so I decided to do podcasting so so you were just explaining because I'll be able to edit it together oh hang on

    Jean-Luc Solandt (29:57.382)

    Mm. Okay. Yeah.

    Jean-Luc Solandt (30:14.15)

    fuel subsidies is that where we were?

    ANGELA WALKER (30:15.662)

    No, you were just talking about some regulation to stop the, do you know what? I've got a strep cell here. I'm going to have that. Half a strep cell from earlier. While you tell us about, you were just explaining about how protecting sand eels is protecting the ecosystem. If you can just sort of start that. Yes.

    Jean-Luc Solandt (30:38.15)

    Yeah, yeah, I'll go back to the beginning of that. Okay, so one of the measures that's been most progressive has been that the UK has banned sand eel fishing in it definitely in English waters. I'm not sure if it extends to Scottish waters. I think it does. Yes, it does. It's the entire and this is a massive decision because those those were bottom trawlers. And they were principally Danish boats because there was a Danish industry for turning sand eels these tiny

    anchovy sized fish, very oily, very important for seabirds, porpoises, sharks, fish like cod, herring, mackerel. They're basically turning them into dried pellets to feed salmon farming. Now, you are turning basically part of the ocean's ecosystem into a food for another part of a false ecosystem, if you like, because clearly aquaculture of salmon isn't a natural process. And also the ratios of conversion.

    from how much pellets you have to give a salmon to growing a salmon is about two to one. So you have to have two times the amount of fish to feed one fish that you want to eat eventually. So it's clearly not a very good industry for the ecosystem. And of course, you might know our seabeds are in massive decline, our seabirds. So this decision was extraordinarily powerful. The Danes do not like it. They're still complaining that this wasn't part of our trade agreement with the EU when we left in 2021 officially.

    ANGELA WALKER (31:58.606)

    So I think that's a big spoiler.

    Jean-Luc Solandt (32:05.702)

    So I think that's an extraordinarily positive step the UK government have done on an ecosystem wide scale, not just the protected areas. This is the entire seas of the UK, which is hundreds of thousands of square kilometres that have been protected from this sort of fishing. So we are starting to learn and seeing some expansive measures. I'd like to see the final.

    ANGELA WALKER (32:18.67)

    So there are some positives to take from it. So what would you like to see next?

    Jean-Luc Solandt (32:32.39)

    set of marine protected areas closed off of offshore English waters, that's probably about 10 ,000 square kilometres, those are going through consultation this year. The target is to get them done by the end of this year. I'd like to then see the Scottish protected areas closed, which have been much more politically difficult because the Scottish fishing industry is more powerful than the English one, because they actually have more sea and more investment per capita in that fleet. And again, it's big boats. And then what we're working on with marine conservation societies, we

    Because we've got legacy of protected area success, I'd like to see our European.

    ANGELA WALKER (33:02.798)

    I'm really sorry. Oh, I'm so sorry.

    Jean-Luc Solandt (33:15.91)

    Sorry, I know where I left off.

    ANGELA WALKER (33:19.502)

    Oh, dear.

    Jean-Luc Solandt (33:20.326)

    I do know where I left off, so it's alright, I can go.

    ANGELA WALKER (33:22.222)

    What's that? Hang on a second. It's a good job we're near the end, isn't it?

    Jean-Luc Solandt (33:28.998)

    your mic you can turn your mic off after you've asked the question that's all right because all right okay don't worry about it but yeah

    ANGELA WALKER (33:32.238)

    Oh, sorry. Yeah, that's, I can't, I can't actually. I don't have a fader or anything. I can't do that. Right. Yeah. I'll just ask you a bit of question again.

    Jean-Luc Solandt (33:41.862)

    You can edit. I basically know where I am. So I can just say this last bit.

    ANGELA WALKER (33:50.03)

    Ahem.

    Jean-Luc Solandt (33:50.406)

    Thank you.

    ANGELA WALKER (33:54.062)

    So what are the key priorities then for the Marine Conservation Society in addressing the issue going forwards?

    Jean-Luc Solandt (34:01.478)

    Well, one of the most exciting things is we've learned from the work we've done legally in the UK and we're replicating that with a project we're doing with our European and non -governmental organisation partners in a number of countries. So they're hopefully going to start seeing their waters closed in their protected areas at least to some of these gears, these trawling gears in the next two to three years. So I'm pretty hopeful.

    ANGELA WALKER (34:29.998)

    Thank you so much for talking to me today. It's fascinating. I've learned so much. How can people find out more if they're interested?

    Jean-Luc Solandt (34:38.278)

    They can follow our website. They can follow me on Facebook and they can definitely sort of just keep bottom trawling into their search engines and see how things are moving. The very famous clothing company Patagonia has got a campaign to ban bottom trawling. So there are various ways they can get engaged and learn about the subject. And it is a global issue. It's not just the UK. And there are lots of things online that people can do. There are lots of petitions. There are lots of campaigns.

    ANGELA WALKER (35:03.278)

    Thank you so much for joining me.

    Jean-Luc Solandt (35:09.862)

    It's a pleasure.

  • Angela Walker: 0:07

    He's sold more than a million children's books worldwide, and if you've ever bought a coffee in a railway station, there's every chance he's got a drawing on that he drew. I'm journalist Angela Walker, and in this podcast I talk to inspirational people. My guest today is award-winning children's author and graphic novelist, creator of the Barry Loser series, jim Smith. I'll be talking to Jim about how he got started and what it is that makes his books so appealing to children. Hi, jim, thank you so much for joining us.

    Jim Smith: 0:38

    Hi, angela, my pleasure.

    Angela Walker: 0:41

    And first of all, you've sold around a million books worldwide. What does that feel like?

    Jim Smith: 0:47

    I don't know what it feels like. Really, it's difficult to put a feeling to that. It's more that I'm just happy to be still writing books. Really, I get to sit at my desk every day writing and drawing, and that's what I've always wanted to do since I was a kid.

    Angela Walker: 1:04

    And how did you get started then?

    Jim Smith: 1:08

    Well, I always loved writing and drawing when I was a kid. I never really stopped. I went to art college and university and I just drew for three years at university. Then when I left there I was showing my work around and I made a little cut out of a wooden Santa Claus from my dad's shop. He had a lighting shop and someone saw it and they had a few coffee shops and they asked me to do a few of those for them and it went from there. Really, I started to do all their coffee designs and cups and sugar sachets and eventually I started to write little short stories and that led to me writing kids books.

    Angela Walker: 1:47

    And so the coffee shop chain is called Puccino's, isn't it? And they're everywhere. There are all the railway stations and so on. What's it like when you get a train and there's someone with a coffee cup and there's a picture on it that you drew?

    Jim Smith: 2:02

    Yeah, I have snuck a few photos of people holding my cups. I like it when I see them reading them. I even like seeing them just in bins and stuff like that.

    Angela Walker: 2:13

    Quite random. Have you ever been tempted to go up to someone and go oh, I drew that.

    Jim Smith: 2:17

    Yeah, I've been tempted. I've never done it.

    Angela Walker: 2:19

    You haven't done it. No, not yet it must be a good feeling. It must be a good feeling. And how do you come up with the idea for the doodles and stuff for that?

    Jim Smith: 2:28

    I don't know. I've always loved coming up with ideas. I went into graphic design originally because I was so ideas based and to them, my dad was in advertising. It was just always around me coming up with funny little ideas and jokes, so I just collect them in my sketchbook, really.

    Angela Walker: 2:45

    And I know one of your biggest characters is poor old Barry Loser. For people who aren't familiar with Barry Loser, can you tell us a bit about his story?

    Jim Smith: 2:55

    Yeah well, he's got an unfortunate name Barry's not the coolest name and then pair it with loser. It's pretty bad. I think it's sort of based on me having Jim Smith as a name pretty common name, yeah. So he's kind of his main thing is wanting to tell everyone that he's not actually a loser is quite a sort of imaginative little kid. So in a way it's sort of a autobiography of me. Quite a lot of the stories are based on stuff that happened to me when I was a kid.

    Angela Walker: 3:23

    Well, one of your biggest fans is my daughter, Emelia, and she's nine and she absolutely loves Barry loser. She's got all your books and so I'm going to introduce her here now. Emelia, what is it that you love so much about Barry Loser? (I like it because they're really rude. I love it because they poo and fart a lot and they're really rude and it makes laugh) Jim, Is that what makes your book so appealing to kids? The fact that they're a bit rude?

    Jim Smith: 3:55

    I think it probably is. I mean, that's the stuff I loved when I was a kid, be you know man magazine, anything a little bit subversive and naughty. I think that's what kids like.

    Angela Walker: 4:05

    And what about the parents, though? Do you get any feedback from the parents?

    Jim Smith: 4:08

    Yeah, I mean some don't like it unsurprisingly, especially if I go to a school and I teach the kids how to draw dog poo. But yeah, mostly they're all right with it, I think.

    Angela Walker: 4:19

    And come on, Emelia, I know you've got another question for Jim. What would you like to ask him? Okay, why do you draw the characters with really big noses?

    Jim Smith: 4:30

    Yes, I think I always liked cartoons with big noses, so I kind of took that, made it even bigger, and I just like noses. They're funny. We've all got a nose sticking out the middle of our faces. Not many of us are happy with our noses. I like smelling stuff as well. It's just a good comedy. Bit of the body, I think.

    Angela Walker: 4:52

    And there was another question, wasn't there, Emelia? Why does everyone have three? Fingers and that's why she says why do they have three fingers?

    Jim Smith: 5:00

    Oh yes. Well, the nice thing about cartoons is you can boil stuff down so you don't have to show five fingers in the cartoon, you can show three or four, so you still get the idea, and it's a lot quicker to do. So it's kind of a lazy man's art, I think cartooning.

    Angela Walker: 5:16

    Thanks, Emelia, for your questions. So they are very distinctive, these characters with the big noses and the hands and stuff like that. Was that something that you had in mind when you were coming up with Barry Loser and the kind of look of the series?

    Jim Smith: 5:33

    Yeah, definitely, I think. Famously, cartoons the best characters. You can tell who they are just in their silhouettes. So I thought about that and I thought, alright, they're going to have to have something that really sticks out. So once I decided it was the nose I had my silhouette that you could tell my characters just from seeing their shadows.

    Angela Walker: 5:53

    So Barry and his mates, they go on all these sort of journeys and have these sort of adventures. But how do you come up with the story ideas?

    Jim Smith: 6:02

    I just have big lists of ideas that popped into my head. I write everything down mostly. If I don't, I definitely forget it, which is really annoying. Then, when I'm about to write a story, I try and find an idea that's an emotion for the character and an idea that's a kind of situation. If I've got those two things and I generally can come up with a alright story.

    Angela Walker: 6:25

    And where do you come up with the idea of all the kind of? They've got some really fun names for the product in there and there was a. I think there was a drink and it was tears of grandma or something. Oh yeah, tears of granny laughter.

    Jim Smith: 6:38

    That's it. That's just an idea that I had that I don't know where that came from that you could make a drink out of granny tears. There's a lot of grannies in my stories. I'd collected cans and bottles when I was a kid. I was always into design and graphics, so it's that part of me being having some fun.

    Angela Walker: 6:58

    And how difficult was it to get a publisher to do this series. You know you've got this character. He's kind of funny looking, he's always talking about blowoffs and bogies and you know how hard was it to kind of like sell that idea and be like I want to do a whole series and I want you to pay me for that kind of thing.

    Jim Smith: 7:17

    I remember sharing my stuff around a publisher and someone said you've got a brain of an eight year old. So I thought, okay, I'm going to have to stick with kids books. And I knew publishers were looking for wimpy, kid kind of books. So I kind of tailored it towards that end of the market, yeah, and I just sent stuff out to agents. Luckily one of them took me on and then she sent stuff out to publishers and that was how it happened. So I mean it took years of kind of rejection, but I quite like to get rejections. It's maybe want to prove them wrong.

    Angela Walker: 7:51

    Yeah, there's probably people listening who are facing rejection. I mean, I know what it's like as a journalist when you picture story idea and you think it's great and nobody wants it. And what's your kind of advice to someone who's listening thinking, oh, I had this great story idea but nobody's picked up on it yet.

    Jim Smith: 8:12

    I think, just trust that it's great and you need to find the right person. I suppose that also thinks it's great. So I think a good stubborn streak helps, just wanting to prove people wrong and keep going, because it's the people that want to do it that end up doing it.

    Angela Walker: 8:31

    And how do you go about planning a graphic novel like this? Do you like come up with a story idea or the idea for the pictures? How do you? What's the sort of process and do you have a formula that you follow each time?

    Jim Smith: 8:49

    Yeah, I mean, I have my little story idea and I do get kind of images in my head of scenes that I think are funny and I want to get to that scene. So I kind of roughly know the arc of the story. Then I just start doing it and it's kind of two steps forward, one step back, going back and tidying up mistakes as I go. But I like kind of being able to do little detours on the way because it kind of surprises me and I think that makes for a better read.

    Angela Walker: 9:19

    And do you think you're ever going to get bored with it?

    Jim Smith: 9:23

    No, I can't see it. No, it's my favourite. I've always wanted to do it and it's my favourite thing to do.

    Angela Walker: 9:32

    And when you're drawing, how big are the pictures? Do you draw them like really big or are they because you know the books are kind of like A5 size? How big are the drawings?

    Jim Smith: 9:45

    Well, I do it all on my iPad. So I have my programme Photoshop on the iPad and I make the page to the size it is, and then I just get my Apple Pencil and draw on the iPad. So it's. I mean I can zoom in, I can zoom out, but I mean, yeah, it's just a little kind of A4 iPad.

    Angela Walker: 10:05

    Oh, wow.

    Jim Smith: 10:12

    yeah now I know that's what my dream was as a kid, and now I'm like hunched over a computer, but it's so quick I used to have to scan everything in. Now it's just there, so it's great.

    Angela Walker: 10:23

    And I was thinking about Barry Loser the other day and I was thinking it'd like make a great cartoon, like for TV. Is that something you've ever thought about.

    Jim Smith: 10:32

    Yeah, I mean it's, it's got I wouldn't say close, it's got somewhere there, some way there a couple of times, and there's someone at the moment that has optioned it, so you never know, but these things take a long time. Yeah, I'd love to see it.

    Angela Walker: 10:47

    Yeah, and who would have the voice? Yeah, and who would have the voice for Barry Loser?

    Jim Smith: 10:54

    Oh, I don't know. I mean I've got there's audio books already and it's a guy called Hugh Parmenter and he does them brilliantly. So if he wanted to do it.

    Angela Walker: 11:05

    That would be amazing. So what advice would you have for someone like a young person who was trying to get into graphic novels? What do they need to do?

    Jim Smith: 11:16

    I think definitely look at the market, see what publishers are publishing, and that probably is your best chance to get into the industry is to kind of give them something like that, but a little twist on it, and then and also just be prepared for criticism and rejection and take that on board but also stick to your vision at the same time. So it's a bit of a juggling act, but tenacity is probably the main thing.

    Angela Walker: 11:46

    And do you know what? I found out the other day that there's almost a million children in this country who haven't got a single book at home. And I thought, you know what? When I was growing up and I had lots of books and my mum used to take me to the library and so on, how important do you think it is for kids to have books at home?

    Jim Smith: 12:06

    Well, yeah, it's really important. I mean it's not only is it great escape, but unlike, say, a computer game maybe, which is great escape, and TV, the book is calming and it's great company and it will teach you something. So I think it's great that World Book Day gives people token every kid gets a token at every school to be able to get a book. And school libraries are getting better and better, I think, and they're having more and more graphic novels and things that kids like. So I don't think it's all bad. I mean, I think there are places where kids can find books and obviously, like you say, the library is brilliant. So there's places you can get them.

    Angela Walker: 12:45

    And do you think that your books are quite a good way in for kids that maybe aren't so much into reading, kind of you know? Yeah, because as a graphic novel they're kind of like entertaining as well as educational.

    Jim Smith: 12:59

    Yeah, I mean I know for my own son, who's nine, that I mean pretty much all he'll read is graphic novels, and I think I was the same at that age. I just read the Beano. So, yeah, maybe it's a fact that it's something like the Beano but it's in a book. Shape is even better because it's getting them used to holding that book. Yeah, definitely.

    Angela Walker: 13:19

    And do you read your Barry Loser books and future Ratboy books? Do you read those with your son?

    Jim Smith: 13:26

    I try not to, because he's my critic! Yeah, I leave him to it and then he'll call me upstairs, if he's reading in bed, and point out any mistakes I've made.

    Angela Walker: 13:38

    And does he come up with like story ideas for you and stuff like that.

    Jim Smith: 13:41

    Yeah, I mean just Just being around him. I get ideas. He comes home from school with little things they get up to and I jot them down. So it used to be my life that made the stories. Now it's his really.

    Angela Walker: 13:54

    That's I bet he loves that.. When you've got a book out and he's like, oh yeah, I suggested that?

    Jim Smith: 13:59

    Yeah, he plays it cool, but I can see he's interested.

    Angela Walker: 14:02

    Yeah, oh, bless him. So you're influencing lots of kids and young children to get into reading, but who were your influences when you were younger?

    Jim Smith: 14:14

    Well, it's the classic Roald Dahl really Roald Dahl and Quentin Blake together. I just thought so perfect. I loved the mix of writing and drawing on the page that they gave. And then it was comics, like Mad Magazine from America, the Beano, and then also I was just obsessed with packaging. I collected Coke cans from all over the world and I just loved the graphics on them. So it's kind of a mix of all of that.

    Angela Walker: 14:43

    We're big Roald Dahl and Quinton Blake fans and I love Mr Magnolia.

    Jim Smith: 14:48

    Oh yeah, I've read that to myself a lot.

    Angela Walker: 14:51

    Yeah, we read it all the time. I love the rhythm of it and the language, which is just so great. And so you've got a couple of new books coming out soon. Tell us about those ones.

    Jim Smith: 15:04

    Yeah, I've got a book called how to Be a Genius Kid and that is out in June, I think. Basically my kid asking me lots of questions I don't know the answers to, so I was googling all the time and I thought these are amazing actually and I can put these into a book. So it's one of those kind of fact books, but also mixed with a graphic novel. And then in August I've got my Big Fat Smelly Poo Diary coming out, which is a little kid's diary Him and his little mates, who are called the poopies, and they just get up to lots of stuff and there's a lot of poo in it.

    Angela Walker: 15:36

    Sounds revolting.

    Jim Smith: 15:38

    Yeah.

    Angela Walker: 15:40

    You don't mind me saying so. That means that the kids are going to absolutely love it.

    Jim Smith: 15:43

    Yep.

    Angela Walker: 15:45

    Oh, if you hadn't got into graphic novels, what else might you have done, do you think? Have you ever thought about it?

    Jim Smith: 15:53

    Um well, my dream was to design a Coke can, which is a bit specific. It's very specific yeah. Well, do you know what, when I go into a big greenhouse and it's all warm and misty and smells of like tomato plants, I just feel like very happy. So maybe something like that.

    Angela Walker: 16:12

    Oh well, maybe you could have your own greenhouse. Have you got your own greenhouse?

    Jim Smith: 16:17

    No,

    Angela Walker: 16:22

    And then you might get. Inspired you could write a whole series about it.

    Jim Smith: 16:25

    Yeah, maybe I'll put my desk in it. Yeah.

    Angela Walker: 16:27

    Yeah, well, I don't know, it might not do the iPad Bit humid. Yeah, bit too humid for the iPad. Well, thank you, jim, so much for joining us.

    Jim Smith: 16:35

    My pleasure.

    Angela Walker: 16:36

    Absolutely fascinating, and good luck with the new books.

    Jim Smith: 16:39

    Thank you very much.

    Angela Walker: 16:40

    I'm Angela Walker and I've been in conversation with Jim Smith, creator of the Barry Loser and Future Rat Boys series. I hope you've enjoyed the show. Don't forget to share, rate and review it so other people can enjoy it too, and check out my website, AngelaWalkerReportscom. Until next time, goodbye.

  • Angela Walker: 0:04

    The UK's in the middle of a chronic housing shortage. The government wants to see 300,000 new homes built every year, local authorities are under pressure and campaigners want to protect our green spaces. So how can we get the balance between the need for new homes and sustainability? I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guest today is Helen Marshall from the campaign to protect rural England in Oxfordshire, and Maxwell Marlow from the Adams Smith Institute, a think tank whose latest report suggests allowing homeowners to build up to eight stories high will alleviate the housing crisis and boost the economy. This podcast is sponsored by Stretto Architects, an award-winning design-led studio based in Bristol. Stretto has a dedicated team specialising in environmentally sensitive urban regeneration. They work with community-led housing groups, housing associations, local authorities and developers to create buildings that a client-led, meet the present need and are planet friendly. Get in touch to find out how Stretto can support your housing project. Thank you both of you for joining us. Maxwell, I want to move on to you in a minute to talk about this new report from the Adams Smith Institute. But first of all, helen, we need millions of houses. Where should we build them?

    Helen Marshall, CPRE: 1:30

    So land is a finite resource and we need it to do lots of things for us. So we do need it for for housing, but we also need it for food, for nature, for our own health and well-being and for climate mitigation as well. So we need to start thinking much more carefully about how we give up our land, and that's why CPR is called for a national land use strategy, something that starts to bring together all these different needs and think strategically about them, and the good news is the government has agreed and said it will do it, but we've not yet seen anything come forward. But really, it is a question of Brownfield first. We know that there are about 1.2 million shovel ready sites for for housing in the country, and that's where the priority should be.

    Angela Walker: 2:27

    You're talking about Brownfield and you make it sound so easy that it's already there. Why isn't it happening? If it would be that easy to rebuild on Brownfield sites?

    Helen Marshall, CPRE: 2:37

    I think part of it is the fact that for you know, an individual developer, it can be easier and cheaper to build on Greenfield sites, but that doesn't take into account the costs to us of that happening in the long term. So whilst it might be easier and cheaper in the short term, actually in the long term that is losing countryside that we can't replace.

    Angela Walker: 3:00

    Maxwell, what do you think about the concept of Brownfield building first rather than on virgin soil?

    Maxwell Marlow, Adam Smith Institute: 3:07

    It sounds completely sensible. The problem is that we don't want to get pulled into the case of Brownfield only. We've got 4.2 million units. We need to make up to a fixed housing crisis right now and if we slow down to the future then you know we're in big trouble later on. And, as our report shows, it's costing about £160 billion a year economically not building and that's actually, if anything, an underestimation. So we're losing about an NHS worth of growth per year because we are refusing to build both on Brownfield and on Greenfield. We're not even coming close to hitting housing targets at the moment.

    Angela Walker: 3:41

    Housing targets? Yeah, the growth is stagnated, as you mentioned. Tell us a bit more about your report. What are the highlights and how would that issue of not enough houses being built be addressed by the suggestions in the report?

    Maxwell Marlow, Adam Smith Institute: 3:56

    Well, the report is really. It's the first ever quantification of the cost of the housing crisis to the British economy. It's modelled off a seminal paper from the US which has some really effective data inputs. So what we found is that, essentially, if you take the density of cities across the UK, primarily around London, it's an incredibly sparse in terms of its density. So we thought, hey, what happens if we lump together buildings, make them eight storage tall, which is actually not that far afield. Rotterdam, for example, one of the crown in the jewels of European cities, is a very, very dense and beautiful city, so it's nothing too crazy. And we found, if you did that, you could actually get up to £160 billion a year worth of growth, even if you just do London, never mind Manchester, leeds, sheffield, etc. Etc. So the recommendations are really to allow greater density in building and letting essentially, developers and home builders have more free reign to build the homes we need as a matter of life and death, rather than just solving one crisis.

    Angela Walker: 5:01

    Helen, you know you represent a countryside charity. What do you think about this idea of building more densely in the cities to save the countryside?

    Helen Marshall, CPRE: 5:10

    Absolutely. We thoroughly agree that density is a big issue and at the moment we are, the system is very unambitious in terms of density and it's something that we've campaigned on locally in Oxfordshire for a number of years, trying to push our local authorities to set higher density targets. And where they've tried to do that, sometimes they they've run foul of planning inspectors who won't let them set those, those higher targets. So we would thoroughly agree that you know, higher density housing tends to be cheaper to build and therefore cheaper to buy or to rent, and it's also cheaper to run and better access to services, better able to support public transport and health. So for all those reasons we would agree that the higher density is good in its own right, let alone the fact that it will also take help to take pressure off the countryside. And I think Maxwell is entirely right that our cities could be, in particular, could be much more ambitious about housing density. And if you look at some of the places in Oxford, like you know, people may may know the area of Jericho in Oxford that is is quite high density but nonetheless very desirable to live. I guess my only caveat would be that the higher the density, the better the quality of design. That should go along with that, because people still need access to to green space and good quality housing. So higher density needs to come with good quality design, but absolutely would otherwise agree and Maxwell.

    Angela Walker: 6:46

    So you're really talking about loosening up of the planning regulations. Is that what you want to see?

    Maxwell Marlow, Adam Smith Institute: 6:52

    Hopefully. Yeah, it's the belief of the Institute and myself that the worst piece of legislation ever made with the Town and Country Planning Act 1947 and its successes, because it basically builds up a really terrible way of going about planning. It doesn't help the environment, it doesn't really help builders, it doesn't help the people it's there to serve, which are, which are people. So we want to see that really torn away and replace with something which is a lot more, a lot more holistic. Really, you know, we want, like regional zoning, for example, which allows developers to have consistent, high quality build whilst also providing the homes we need as well as the infrastructure, because I'm sure, as we'll come on to it, we have a real infrastructure problem in this country and there are so many different solutions to that one problem that we have got staring in the face of and refusing to do anything about.

    Angela Walker: 7:42

    What strikes me about this concept of building upwards and making existing homes larger is that don't we really have a shortage of starter homes, of people who want to get on the property ladder, who need their first home. So how does your report address that issue, maxwell?

    Maxwell Marlow, Adam Smith Institute: 7:58

    Well, totally, let's remember, this is a quantification report. It's not, per say, a policy document. We have other policy documents ready and waiting for that one. But I completely agree, we need starter homes. We need, we need to remember the property ladder moves up and down. So my grandmother, for example, lives in quite a nice, you know, four-bed house in Northumberland, but she lives by herself. She doesn't need, you know, all that space. You know a family who wants to grow into that house could do so, but there aren't any bungalows available. Or you know, fit city living facilities in the area, same for the first home buyers. I mean, I want to get on the property ladder. I won't be able to because of current prices, but I would only want a small flat. So, really, if you want to address those smaller problems, it's about building a wide variety of properties and that means bringing down construction costs, because it makes more sense for builders to build larger units on a square foot basis in terms of cost, but so those smaller buildings are out of the picture, really. So bringing down the cost of construction by bringing down the cost of planning is a really good way of fixing that housing crisis for those who really affect the most, which are young people.

    Angela Walker: 9:01

    Why does the cost of planning push the cost of houses up so much, then?

    Maxwell Marlow, Adam Smith Institute: 9:06

    Well, if you take, you know the overall cost of a project. So we think of, you know, housing as being always just bricks, mortar, glass and wires. You know, some lead on the roof etc. It's not that case at all. I mean, actually about 40% of the cost goes into the legal planning aspect, whether that's, you know, getting the environment sorted, going through various checks and inspectors, making sure that you know you're going through a proper planning process which can take upwards of three, four, five years, which pushes costs up, you know, astronomically and that really increases cost. Imagine if you were trying to get a phone, for example, and planning to buy a phone of over four years. You know the costs are build up over time because you're not actually being able to access that product. So that's the real problem is that it's the cost of planning rather than the cost of building.

    Angela Walker: 9:53

    It's all very well to say let's build up and outwards in the cities, make the cities denser, but of course there are people living in the countryside who need new homes too. There are families with young people who are growing up who want to move out and they don't want to leave their village or the small town that they live in. Helen, some people would say you know, this is nimbyism. You just want the cities to get denser and nobody's allowed to a new home in the countryside. How would you address that issue?

    Helen Marshall, CPRE: 10:21

    Well, first of all, we would agree that there is a real crisis of affordability and actually people in the countryside are often disproportionately affected. So, as you say, they can't stay in the communities that they've grown up in and love and they're driven out by rocketing house prices and by the lack of genuinely affordable social rented homes and the boom in sort of second houses and short-term lets. So there is a problem there. We would say that that is best addressed by working with local communities to develop small housing sites that meet that local needs, so that focus on genuinely affordable social rent. And I think we would find that if that was done, it would be easier for developers through the planning system because they wouldn't be running up against objections. Where housing is developed in partnership with local communities, then they're much more willing to accept it. And we need to be thinking about how we can give more support to small and medium-sized builders who are more able to deliver these smaller sites, rather than the market being driven by a few big players. What we find is that villages are generally very keen to accept that small level of development that would meet local needs. What they object to is the thousand houses, executive homes, often four bedrooms. Very few of the starter houses that we've talked about, being dumped on the edge of the village with no extra investment in infrastructure or services.

    Angela Walker: 12:00

    When we talk about planning. It's my understanding that if a local authority doesn't have a local plan in place, it's easier for developers to get their projects approved. Can you explain to us, helen, about local plans and their role in the system?

    Helen Marshall, CPRE: 12:16

    Local plans are really important because they are a transparent, democratic way of local people having a say. So they are brought forward by your local authority, either the district or unitary council in your area, and they set out the development proposals for the next 15 to 20 years, so the amount of development and also where any major development would go in the area. It's not a perfect process but it does allow communities to have some transparency and some say in it. The problem is that quite a few areas throughout the country don't have these plans in place and in those areas that means that development comes forward on a speculative basis without that strategic thinking and involvement from communities. So we're firm believers in the local plan process. There are ways in which it could be involved. We would say that communities should have a greater say, but it is a sort of fundamental bedrock of our planning system.

    Angela Walker: 13:25

    Max, what does the Adam Smith Institute think about local plans? You have a view on it and how it helps or hinders building of new homes?

    Maxwell Marlow, Adam Smith Institute: 13:36

    I will take a different view to Helen here. Unfortunately, given the scale of the crisis we are in at the moment, I think local plans are the cause of it. There are too many of what we call veto players existing within the system. As I said about the cost of construction, a lot of that is doing surets and engaging with local communities and I'm all in favour of that. I think that's a really good thing. But often they are just used at local planning meetings to try and veto any sort of development and there are loads of cases of this up and down the country. There was quite an interesting case actually in Henley where someone is trying to put forward a local food market and make a proper established thing and it's not really within the local plan, but there's a local council meeting and everyone goes forward and people are arguing about what the health and safety hygiene requirements were because someone had to go and borrow a knife off another stall about two months ago. This is very petty and very destructive and local plans really don't help that. As I said earlier, we are in favour of regional planning allowing developers to have really beautiful, nice, high quality homes. That really should be done on a local referendum basis. There should be a referendum about what you can choose as your design and where you'd like it. But that has to be enforced, that has to be by central government in order to railroad through those local objectives, because the local objectives are what are causing us to lose, as I said earlier, £160 billion a year in growth.

    Angela Walker: 14:56

    Where I live, which is in the Oxfordshire Berkshire border. We've got lots of villages here and I think people are really worried about all these villages being joined up, in particular, becoming almost like an overspill of Reading where I am, and this is why people are objecting.

    Helen Marshall, CPRE: 15:14

    Is that something that you see, helen, absolutely the people who live in villages have chosen to be there or it's the community where they've grown up in and they feel very passionately about that community and the importance of rural life and village life. I think that's one of the things that our planning system has achieved quite well over the years is in terms of protecting settlements and preventing coalescence and creating the character of the English countryside that is in many ways the envy of the world.

    Angela Walker: 15:55

    Maxwell, I've been reading this report. It's quite hefty. There's a lot of tricky maths going on in there, but one of the things that it says is we seek to answer the following question what is the effect of housing regulation on house prices? Did you reach a conclusion to that question?

    Maxwell Marlow, Adam Smith Institute: 16:14

    It's essentially answered at £160 billion of the amount there's an overall cost, but in terms of the issue we have is there's not enough data available. The Adam Smith Institute always uses publicly available data so that we can have gender such as yourself, or even critics like Helen, who can come along and access the same data sources that we have. The problem is the data is not there to use and we could spend a lot of money on getting a private modelling company who can access terabytes of data to come along, and it's really not the way of us doing it. We didn't come to that conclusion. We did find out how much infrastructure costs per person, which I think is really interesting. We find that per person in any new community, it costs £15,000 to provide infrastructure for that person, and our question is where on earth is that money going to come from, especially when we have S106 requirements and silver requirements essentially the community infrastructure levy, which I think is completely useless at doing the job. Helen will hear about it when she has a conversation with her stakeholders. You may notice it around Reading a Barcha and the local infrastructure we have is failing and it's because the system we have in place, which gives money from developers to local councils to provide infrastructure doesn't work. We're in favour of essentially ring fencing that as well that's still money and giving it to local developers. They can integrate it within their development plans. It's a good sell for people moving in, it's a good sell for people who want to remain in the area and it's good for future growth and generations. That's how we solve that. There are lots of other solutions.

    Angela Walker: 17:45

    Infrastructure is such a hot topic. You only have to go in a Facebook community group and there's people saying I can't get a doctor's appointment. How do I get through the computer? Things not working and yet down the road they want to put another 300 homes. This is happening right here on my doorstep. People are really worried and upset about that. There's already a lot of traffic on the roads in the morning. Can't get doctors, can't get a dentist appointment. Tell me more about infrastructure and how your Adam Smith Institute suggestions work to help alleviate problems with infrastructure.

    Maxwell Marlow, Adam Smith Institute: 18:21

    There's a really great group called Britain Remade which have done some work on infrastructure provision and what the planning cost of that is and the lower terms costing. For example, the paperwork required to get that built is eight times longer than the lower terms crossing. That is an insane way of doing infrastructure provision and it's happening all over the country. It's over planned, over burdened and it's not being provided for the people who need it the most. It's the local residents. There are other problems, of course, with doctors appointments, that's NHS. That's a really integrated arms length problem for government. But if we look at the actual provision of, let's say, utilities of water, of roads, that we have a planning problem where it's too expensive to provide it and an inefficiency problem of that provision by the CIL or the S106 obligations.

    Angela Walker: 19:09

    Do you want to come in there, helen? What do you think about infrastructure?

    Helen Marshall, CPRE: 19:12

    Well, I would agree that infrastructure is creaking at the seams for many of our rural communities, but I think the thought of putting developers in charge of solving the problem is pretty laughable and I don't think we'd have much credibility with those local communities, because we see time and again where developers have promised infrastructure that that doesn't come forward and they are long gone over the hills and the promised green space or village hall or various other bits of infrastructure is yet to be seen, and we see that in communities time and time again. So I would agree that there is a problem. I think that perhaps in way brings us back to the argument in favour of higher density and building, you know, intensifying the density of our bigger towns and cities, because I think that puts people in much better place in terms of access to services and supports things like public transport.

    Angela Walker: 20:20

    How can we hold developers to account if they, you know, build a housing development and then push off before they've done all these things that they promised, like putting in parks and improving the infrastructure? Is there not a regulation in place to hold them to account?

    Helen Marshall, CPRE: 20:37

    It's a really good question and it's partly where our local authorities are under pressure at the moment, because we know that they are very strapped for cash and the enforcement teams are very under resourced. We're hearing that in many councils they will now only address issues, that they have a sort of triage system and will only look at really, really critical issues. So there's lots of low level concerns that are just not addressed, and even where they are looking at the more serious breaches, it can be a long process to hold people to account.

    Angela Walker: 21:14

    And it's hard to prove as well, isn't it? I mean, I've done reports, several reports on housing development that have been built and then later on, nearby homes have flooded and the people living on those housing estates are convinced it's because of the displacement of water and so forth that's caused flooding where they live. But it's very, very hard to prove and it's very hard to hold developers to account when that happens. Max, what could we do about that kind of thing?

    Maxwell Marlow, Adam Smith Institute: 21:42

    Well, we already have a mechanism that's called the market. So if a developer behaves badly and doesn't provide what it's or what obligates to do, it's unlikely to receive future contracts. You can see this, for example, of various different housing developers who provide really great service and then they don't have a problem in other councils because they've heard how great the service is. The inverse is true as well. If I don't want to name names, but person in homes, for example, has a lot of trouble getting new housing development done because of the quality of their work which is kind of well known about in the kind of housing communities there's not being up to standard, whereas there are other companies and I can't name names there in case I sound like favoritism of my favorite housing developers. But let me tell you there are some really good ones out there who have very different problems getting plans put through. But I just think it is a case of reforming SIL, because I think the local councils, yes, they're overstretched, but their oversight of a project obviously isn't working. So we need to have another look at the regulations that govern the governing of local infrastructure provision. So that's why we advocate, as I said, for S106 and SIL reform that could really transform the way in which our houses and our communities can access that infrastructure they so badly need.

    Angela Walker: 22:49

    Now, the government's consulting on changing building regulations at the moment, isn't it? It wants to see significant carbon savings new homes and non-domestic buildings that are high quality and affordable to run over the long term, and new homes and non-domestic buildings that are zero carbon ready. They sound like really great ideas. Are they achievable, Max? What do you think?

    Maxwell Marlow, Adam Smith Institute: 23:14

    Well, let's look at what the housing stock we have at the moment is. It's some of the oldest in Europe. It's some of the bleakest, it's the most dangerous for health, it's the smallest in Europe. So we have some serious problems when it comes to our current housing stock. One issue, though, with zero carbon homes is that who's going to pay for it? Now, I've already said, the cost of housing, the cost of building that is, is really really high. The problem is we don't yet have those mechanisms in place, but someone's got to pay. So it's either going to be the developer, who probably doesn't want to take it out of his margins it could be the person buying the house, which they're already very high prices, so good luck with that or it's going to be the taxpayer, who's going to come over. Subsidies Again, very problematic. Tax burns are all time high and we can't afford to do that. As we've seen just today, labor has just dropped there a £28 billion a year. It's investment figures. So I really think that's a big, big problem. So we have to think about the cost of it. Conceptually, that's fine, but you know, when it comes to the cost, I think we have to really have a really honest conversation about who's going to pay for that and if we could maybe change things around the periphery, like the planning system, in order to bring down the cost of planning to compensate for an increase in the cost of building.

    Angela Walker: 24:23

    Helen, what do you think about these ambitious ideas that the government wants you know? Carbon savings, zero carbon ready houses, that kind of thing. What do you think about it?

    Helen Marshall, CPRE: 24:32

    Well, certainly in terms of rooftop solar. We think it's long overdue making that mandatory on new houses. It seems to us completely crazy that you know, for example, we've got big solar farms coming forward in the Oxford Greenbelt, several hundred hectares and then these are being put in right next to housing development of 3000 houses coming forward in the Greenbelt and there just seems to be a complete lack of joined up thinking there. And the cost of installing rooftop solar as part of construction of a house, especially on a large site, would be would be pretty marginal and especially compared to the loss of Greenbelt and Greenfield land that would otherwise be required to provide those solar panels. So we really welcome the government's current consultation. We would absolutely support mandatory solar panels on on new build domestic and non commercial where possible.

    Angela Walker: 25:36

    Yeah, it sounds like a bit of a non brainer, max. Well, why aren't we putting solar panels on on new houses? If it was made mandatory and you say, oh, who's going to pay with it? Well, it would just have to be absorbed as part of the building cost, surely?

    Maxwell Marlow, Adam Smith Institute: 25:49

    Yes, and that's the problem, you know it would build as our rational they want to reduce costs as much as possible and increase prices where they can. It's a you know, it's a simple facet of human psychology in the economy. So that's the main problem. There's also cost maintenance, which is also quite, quite high. If you don't really know what you're doing, you've got, you know, solar panels suddenly on your roof and you know, as people we are so living cost living crisis. People don't have the money spare to begin the maintenance cycle on these solar panels. Again, not opposed to it in conceptually, but I'm looking at the real problems here. I don't have a problem with building large solar farms, for example, because it's run by a professional company who know what they're doing, and we're in the middle of a very serious energy crisis at the moment, to the point where we're thinking of importing our energy from Morocco from their solar farms. So kind of exporting our problem, and I'm not really sure why we're doing that when we have so much space to build on. I mean, just to come back to the green belt thing.

    Angela Walker: 26:42

    I'm green. I want to talk to you about that. You're saying, oh, we've got so much space to build on, but once we build on it it's gone. It's not a green space anymore. And, helen, you're shaking your head. You're from a countryside, charity Maxwell says we've got so much space to build on.

    Helen Marshall, CPRE: 26:57

    That's just not true in my view, particularly in the southeast of England, where we have such a high density of population you know sort of the part of the highest density across Europe and, yes, you know, not all of it is necessarily got a house on it or a building on it, but the countryside is impacted by roads and all the other developments, so there's very little tranquil space left in the southeast and we need to preserve that and protect it. And, as I said at the start, you know we need our countryside to deliver lots of things for us, including food, because food security is an increasing issue, including nature, because we're in the middle of a biodiversity crisis as well as the climate crisis, and we need our countryside for climate mitigation, for things like planting trees and natural flood management.

    Angela Walker: 27:54

    But of course you know solar is a greener energy. You know it's better than fracking. Some might say you know how can you be a green campaigner and not supporting solar? Some people might not.

    Helen Marshall, CPRE: 28:07

    Well, we absolutely support solar energy, but it's got to be in the right place, and that right place is rooftops, and it is a no brainer. Why should we not be putting solar panels on a, particularly on new build, but also retrofitting? And that's where we need government to put in place these regulations as soon as possible.

    Angela Walker: 28:28

    What about the limitations that Maxwell mentioned? I mean, I've looked into getting solar panels from my house and it was quite expensive, the maintenance was an issue and they don't really last forever, do they? So that's put me off personally, and I'm sure a lot of other people are like that, and we don't really seem to have any subsidies in place to encourage people to sort of retrospectively put them in. I mean, there are limitations to solar, aren't there?

    Helen Marshall, CPRE: 28:52

    There are limitations to solar, but it definitely has a part to play in meeting our energy needs for the future and I think that's where we would like to see the emphasis in terms of subsidy and a genuine brownfield first approach, because I think technology is moving fast and solar panels are improving all the time. I think there are lots of people who now run them quite happily and have got their heads around it and have are finding that it works for them and you know, obviously with energy bills going up, it is a real way for people to look to long term and to provide their own energy security and to keep on top of those bills.

    Maxwell Marlow, Adam Smith Institute: 29:37

    Well, I mean we could put it on buildings and put it and have solar farms. I don't see why you can't have both. You know, I think it's really important. I mean, we speak about the density we have. How much green space do we have? We have just as much well, really quite similar amount of green space we did in the 40s because green belt's grown and grown for some reason, even though the majority of it isn't that green, and we still have those nice areas of outstanding natural beauty. They're not going anywhere. I can't see person going up to the Lake District to start dropping red bricks all over Lake Windermere. I don't see that happening. But especially in the Southeast, we still have loads of space, right, I mean, only 7% of the UK is actually built on. The rest of it is actually kind of green or brownfield site. I think that's really important to remember. We have loads and loads of space that we're just choosing not to build on and it's partly the Nimbism of saying I'm sorry, helen, you know we should have X, but it needs to be in the right place or your housing needs to be affordable. Well, we actually have some of the highest numbers of social housing per capita in the UK, and the fact we're not building enough private housing means that no matter what housing you build will be unaffordable unless there is considerable subsidy from money we don't have. So it's a case of essentially saying we need to run through these Nimbia problems, build the damn thing, sorry to say, and get on with it Because we don't have the time, we don't have the money, and I'm not getting any younger and I'd like to buy my own house, please, you know, and it's so shared across my generation and it's not going to be the case if we keep objecting to things over you know, not the right place or unaffordable. It makes me really upset, to be honest, because this is, you know, this is dealing with my life and it's making me poorer.

    Helen Marshall, CPRE: 31:10

    I find the term wouldn't be quite offensive, actually, because I think it's just a cheap job and doesn't really take into account the fact that the people who care about these things and get involved are those who care most about their community and their local environment. And if they don't care, then who should? I think we all accept that there is a housing affordability crisis. The way to deal with that is to focus on bringing forward housing that is for social rent and in perpetuity, so that it is prioritised for local people in perpetuity. We need to think much more carefully about Brownfield first and focus on those 1.2 million shovel ready Brownfield sites across the country. We need to think about density and being much more ambitious about density across the piece, so both in our cities, but also upping the density on Greenfield sites as well, where they are allocated for development, we should be maximising the use of those sites. If it were easy, we would have done it already. I think that the planning system does need some reform, but the idea of virtually dismantling it all together and just letting the market have a free-for-all and those with the most money dictating doesn't seem to me to be the right solution at all. I think we think that the planning system actually does need reform, but that should be to put community and nature at its heart.

    Angela Walker: 32:43

    Maxwell. Helen wants to see Brownfield sites built on first. I know it's easier for developers to start on a fresh site. Can't we just bring in some regulation that means that they have to build on the Brownfield first? Why can't we do that?

    Maxwell Marlow, Adam Smith Institute: 32:57

    Well, there's some exciting stuff you can do. So, for example, cleanup costs are very high and the way in which the government company manages cleanup cost compensation is they pay at the end of the project. So if you're a developer who comes into cleanup a site an ex-industrial site, let's say they used to make car batteries there you have to do a lot of industrial waste clearance and sanitation. There is actually a subsidy in place to do that, but it's paid at the end of the project. That doesn't make any sense if you're a housing developer, because then you've got to pay all this money and all this time to clean it up to very high environmental standards and you're losing loads and loads and loads of money over that period. Economically it doesn't make any sense. So we suggested just flip it, pay the money at the start and then clean it up, and then, if they don't clean it up completely, money has to go back to the government. Really simple stuff like that.

    Angela Walker: 33:40

    Oh, hang on. How would you claw back that money when we've already got a system where, if people make a substandard building that causes flooding in the next village down, we're already in a situation where people are not being held to account when their problems arise. If you give a developer money to clean up a site and they take the money and don't clean up the site, how are we going to be able to claw that money back from them when we can't seem to get money back for other things that developers are failing to do?

    Maxwell Marlow, Adam Smith Institute: 34:10

    This is quite a simple contractual obligation that can be upheld within the courts. The government's not afraid of using its judicial power to push through and punish those who undermine it, and that would certainly be a case, because the way in which this contract is usually done is through DEFRA rather than D-LUC, so they're quite happy to come in with a large legal hammer to bash developers who are very biddly, badly paid and essentially defraud the state, and I'm sure journalists such as yourself would be all over it if it were the case and we'd have quite a nice bit of justice there. It's a trust problem, don't get me wrong, but it's something that we can very easily sort out. But it's an economic problem of why are we cleaning up Brownfield sites to build on? It's because the incentives are misaligned. So we're relying the incentives and we can start doing a lot more at Brownfield first, but again, that only does 1.2 million houses. We've got 4.2 million houses to build to solve the crisis. So that's a quarter of the way, and every day we wait, that crisis gets worse.

    Angela Walker: 35:11

    Yeah, this is a crisis that's getting worse and worse. Helen, what can we do now so that we can start building the right homes in the right places and start housing people and maybe bringing housing prices down and so on?

    Helen Marshall, CPRE: 35:25

    What I would say is that Brownfield sites aren't a finite resource. So there are new Brownfield sites that come available over time. So, although there are 1.2 million shovel ready sites in the country at the moment, that's just the tip of the iceberg and there are more sites that could be brought forward and, as we know, with things like the changing retail picture, it's almost a renewable resource as things change over time. But what we could do most now I think one of the most interesting things that we could do very quickly is to move to increase density of development where it comes forward and we would absolutely support that.

    Angela Walker: 36:12

    We're both in agreement there, which is nice. I want to ask we've talked about planning where to put houses and so on. Let's talk about actual sustainable housing projects. Do you think that the current housing that's being built is being built to higher, green enough standards? Are we building sustainable right now? And if not, why not? And how can we get to that place?

    Helen Marshall, CPRE: 36:36

    We're not building high enough quality houses at the moment. It seems to me pretty disgraceful, but at this point in time, we are still putting houses on the market every day that are going to need retrofitting in terms of energy standards, and that is something that we need to move to address really quickly. We hope that the government's current consultation on building standards will go through quickly and that they will then move to act rather than continually kicking the can down the road. And we can see from other countries in Europe that are way ahead of us. Sweden, for example, has been building well-insulated, high standard homes for 50 years or more, so we are completely lagging behind and we need to get that sorted and to be building houses that are fit for the future, because the people that live in them will otherwise pay the costs.

    Maxwell Marlow, Adam Smith Institute: 37:37

    Maxwell yeah, I somewhat agree with Helen. Actually, the main issue is that the cost of planning is too high and it puts out the window the idea of sustainability, because you can't even get the shell built for less than £300,000. So try adding all the insulation, the high-tech glass, the heat pump, etc. That's just uneconomical and we can't be expected to build low-price homes at that cost. So we need to reform the planning system so that we can bring down the overall cost of building in order to put in the sustainability aspect, which, again, not too concerned really about government coming in and saying we should do this because it makes more economic sense in the long run.

    Angela Walker: 38:20

    There was a whole housing estate that had to be pulled down the other day before they'd even finished building it, because it was so substandard. Did you hear about that one, maxwell?

    Maxwell Marlow, Adam Smith Institute: 38:30

    I did indeed, and we shouldn't be allowing the building of substantive homes. It's a disgrace, but we actually need to build homes as well. I'll bring up the number again 4.2 million units. It's really, really important we fix this problem, because it's costing us an entire NHS worth of growth a year.

    Angela Walker: 38:45

    Maxwell, were there any other interesting points that came out of this recent report that you've released?

    Maxwell Marlow, Adam Smith Institute: 38:51

    Oh, loads of stuff. We found that if you apply the house price index to chicken if you bought a chicken in 1971, you apply the house price index from 1971 to now the chicken would cost £82. That's the scale of the crisis we're in. Chickens don't cost £82 now in real terms or nominal terms, unless it's a really, really, really nice chicken. But we're talking about classic houses here. The scale of the problem is ginormous and it's really. We believe it's silver bullets. They could save the British economy. When we look at America, for example, I know we always like to demonise America for various reasons. They are rich, they are happy and they are building at insane rates where everyone's going to pay more. If we were to take the UK and pull London out of it, compare the wages we get we would be poorer than the poorest American state of Mississippi. This wasn't the case 24 years ago. It is the case now. A lot of that is because our planning system has just continued to grow and pull back development and investment. Phoenix has doubled in size over the last couple years and they're now wealthier than a lot of people in the southeast of England. You have bus drivers who have paid better than the Prime Minister over there, we really have to have a proper look at how much this is costing us, and it's all down to planning.

    Helen Marshall, CPRE: 40:05

    I just don't recognise the picture that, with all those problems, you can put it all on the door of the planning system. It seems to me that the planning system is there, when it works well, to adjudicate between different interests between the economy, between environment and between communities. That's why it's there to stop a free-for-all and those that happen to have land or happen to have money being able to do exactly what they like. If we don't think that that's right, if we don't think that anybody should be able to build what they like wherever, we need some kind of system of regulation. That's what the planning system is there for and why it's important. Does it need some reform? Does it need to be brought up to date? Does it need to be restructured in a way that it is there to address our climate and nature emergencies? Absolutely, but the thought that we should scrap it all together just seems to me to be opening the door to a future that none of us would like to see.

    Angela Walker: 41:13

    Max, do you want to scrap planning all together? Do you want a free-for-all, so that people can build wherever they want?

    Maxwell Marlow, Adam Smith Institute: 41:18

    Not at all, but I think we need to have a serious conversation about why the planning system is so bad. If we want to, I'll just tell you this point that she doesn't believe it's a silver bullet. We can't build bridges, we can't build railways, hs2, the problem with that was planning. We can't build new businesses. We haven't gone off lab space, so our key sectors of R&D can't grow. It affects our farming. It affects our food. It affects where people like me can live. Professionals who live in a city maybe want to move out. I can't move out and enjoy more country space because it affects the cost of housing. It is a panacea. We published a report called the Housing Theory of Everything. I really do recommend it. If you can't build, it increases your pollution because essentially you've got to drive everywhere and because the local infrastructure is underfunded because we can't get more builders in to generate more SIL money and S106 money, then it continues to be underfunded. It is a rolling crisis that touches everything in the economy. If we don't fix it by having a fundamental look again at the planning system, which isn't laze fair still. There has to be some regulation there, but it needs to be much more free to adapt and inevitably change to the needs of the entire country, not just those isolated communities.

    Angela Walker: 42:28

    Helen, what about a massive overhaul of the planning system? What parts of the planning system would you be happy to see relaxed?

    Helen Marshall, CPRE: 42:37

    Well, I think what we would like to see change in the planning system is to put communities at the heart of decision making. For example, neighbourhood planning, which has been coming to the fore in the last 10 to 20 years, we think is a really good way of allowing communities to have a say in what they want for their local area. I think if we could invest more in neighbourhood planning and bring that to the front, that might actually facilitate more building and more development, but in keeping with the wishes of the local communities. We are big fans of neighbourhood planning, but that needs to have some protection within the system. So allow people who have invested time in neighbourhood planning to know that those neighbourhood plans will be followed and not overridden by development applications coming through on a speculative basis. I think it needs to be part of a bigger conversation as well about how we use land, which is a finite resource and which we need to deliver all sorts of things for us. Yes, we need housing, but we also need food. We also need nature, not just a nice, pretty nature that is lovely to look at, but actually nature that delivers so much for us in terms of clean air and clean water and all sorts of other benefits. We do need that conversation about how we use land in a small country where land is a scarce resource.

    Angela Walker: 44:27

    Any final thoughts, Maxwell?

    Maxwell Marlow, Adam Smith Institute: 44:30

    I want to bring up a statistic that I found out about I'm a part of the research paper. Essentially, if you take the gross value of all the buildings in the UK in comparison to the gross value of all the companies in the UK, it's three to one. So that means we have three times more value held in property and real estate than we do in any of the productive assets in the industry and the economy In America. That's one to one and you wonder why they're so much richer. Planning is at the heart of that and I'm really you know you'll just as well know. If we do not fix planning to make it work for everyone, not just the communities, not just nature, but for the economy and for young people specifically then we're going to have a really hard time growing and being a wealthy country, a happy country and a healthy country in the future.

    Angela Walker: 45:14

    I want to just pick up on that, really, because we've lost a lot of industry in this country. We've lost a lot of factories. We're importing lots of stuff. That's not down to planning, is it? That's down to the world economy.

    Maxwell Marlow, Adam Smith Institute: 45:25

    Of course. So now we need to start specialising where we can, which is in financial services, it's in the general service industry, it's in lab space, r&d. The Oxford Cambridge Art was vetoed for planning reasons and we could have created what could have been equivalent to the California hyper tech space. That could have had our own Silicon Valley in England, but we said no for planning reasons. It drives you mad at how wealthy that could have made everybody in the country, but we've decided not to do it because of planning. So it's stuff like that. So, because our planning system does not allow us to adapt quickly, it means everyone's poorer later on, because all this stuff requires capital, it requires investment, it requires infrastructure and the planning system exists to stop that. If you read Hansard when it was first brought in, if you read the current, in a Greenbelt documentation done by the government, they don't mention nature, they don't mention the environment, they mention stopping urban sprawl and stopping economic growth. That is the problem and that is why I, as an economist, I'm really upset by the planning system and for the and, as a young person, for my future and the future of my friends and family in general.

    Angela Walker: 46:31

    Any final thoughts Helen?

    Helen Marshall, CPRE: 46:33

    I think, if we're going to talk about the Oxcamark, I would say that that was stopped because it was a purely economic driven project and it didn't take into account the environment or the social aspects and therefore it wasn't sustainable development in the. In the broad picture of things and and actually there is you know, we need to be more creative and innovative. I mean, one of our examples is that, yes, you know, for example, oxford is is renowned for its science and technology in leading the way. Does that mean that every spin-off company or every sort of technology development that is driven by Oxford University has to be delivered in the city of Oxford? You know, scientists are able to collaborate all around the world together these days. And what to stop Oxford? You know, if it can have campuses in China, why can it not have campuses in in north Wales? You know, I mean there are things we could do around twinning and sharing economic benefits that that certainly should be looked at. My final thought is that the countryside and the rural character of England is part of what makes England. You know, if you ask people, they might talk about the NHS and then probably the countryside. But we really need it. We really need the countryside, not just because it's it's pretty and nice to look at in places. It is part of our economy, it is part of our social fabric and obviously it's part of our of creating a healthy environment. So we need to be mindful of all those things before we we squander it on development. And where development does come forward, it should be the right development in the right place, and I know that's easy to say. It's less easy to deliver, but that doesn't mean that that isn't what we should be aiming for.

    Angela Walker: 48:33

    Thank you both so much for joining me Helen Marshall from the CPRE, oxfordshire and Max Will Marlowe from the Adam Smith Institute. Thank you, you've been listening to Angela Walker in Conversation. I hope you've enjoyed the show. Please do check out my website, angelawalkerreportscom for more news stories and don't forget to subscribe to the YouTube channel Angela Walker in Conversation. We're all at the mercy of the algorithm these days, so please do share and rate my work if you're enjoying it. Thank you so much. Until next time, take care.

  • Angela Walker: 0:07

    7 year old Zane Gbangbola was killed by poisonous gas while he slept in his bed in his sorry home. One night, his father was left paralysed from the waist down. The evidence shows hydrogen cyanide was responsible. The authorities deny it leaked from a former landfill site adjacent to the family home. 9 years on and Zane's parents are still campaigning for a public inquiry. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guest today are Kye Gbangbola and Nicole Lawler, Zane's parents. Thank you both so much for joining me. I'm a parent and I can only imagine what you've been through, so thank you for sharing your story about Zane with us today. Can we go back to February 2014? There was widespread flooding across Surrey. It was getting worse. What was happening where you were in Chertsey?

    Kye Gbangbola - Zane's Father: 1:14

    So much like the rest of the country, Chertsey was flooded and the surrounding area was flooded and people were defending their homes as best as possible and that is usually in this area by the mechanism of pumping, because we have in our Victorian houses flood basement and our house is all electric, so our pumps were all electric pumps.

    Angela Walker: 1:44

    Talk me through what, when you first realised there was something seriously wrong in your own home what? What had happened there?

    Kye Gbangbola - Zane's Father: 1:54

    We had no clue that there was something seriously wrong, because the nerve agent is invisible and odourless and effectively it destroyed us as soon as it got into the home. So the first we were aware was being in hospital Having Nicole found Zane collapsed, and she did her utmost to resuscitate Zane. But we wouldn't have known, because the gas was invisible and odourless, what had caused Zane to be unwell and to have collapsed. So Nicole was the person that alerted the emergency services. As a result fortunately she's a heroine the whole area got evacuated because when the emergency services arrived they knew that the situation was pretty serious. I was unconscious. Nicole would have been screaming for me to help, but this gas had already removed me from the scene. I was in cardiac arrest and knew nothing about it.

    Angela Walker: 3:10

    It's horrifying. So Kai and Zane were taken to hospital. What happened after that?

    Kye Gbangbola - Zane's Father: 3:18

    Everyone was taken to hospital because of course Nicole was poisoned but in her heroic effort she was able to try and move around and when we got to hospital they continued. Air ambulance came as well. They continued to try and revive Zane and myself in resu s (resuscitation).

    Angela Walker: 3:46

    And obviously they ran many, many tests in hospital. What did those tests indicate?

    Kye Gbangbola - Zane's Father: 3:55

    Hydrogen cyanide poisoning in our blood.

    Angela Walker: 4:00

    And the emergency services. They came to the whole parade of houses, to the terrace of houses, and I'm sure that they evacuated all the neighbours. Tell me about that emergency procedure that took place then.

    Kye Gbangbola - Zane's Father: 4:19

    So our understanding is that there is a protocol in the case of events and acts of terrorism, etc. So the people that arrived at our home were called hazmat, and they're the same people that would have arrived at, say, parliament. They're specialists and as soon as they had the detections of hydrogen cyanide, they started to evacuate the area. The statements from neighbours read much as follows we were contacted by emergency services. The police and Fire Brigade came around, alerted us that Zane had been taken to hospital and made clear that hydrogen cyanide was detected. They were asked to write down their next of kin because by the time somebody comes to evacuate them, they may no longer be alive, and that's why local people were entirely aware of the hydrogen cyanide. Because hydrogen cyanide is a chemical weapon of mass destruction. It kills people within seconds and that's why it was used in World War II gas chambers.

    Angela Walker: 5:35

    And tell me how this poisonous gas came into your house. How do you think it got in?

    Kye Gbangbola - Zane's Father: 5:43

    So we go by the evidence and the data, and what the reports stated is that the flood water came across land, and so the belief is that that is how the hydrogen cyanide came into the house. So it's a case of there's a source in an area. The flood water acts as a pathway and then brings that gas to people and properties.

    Nicole Lawler - Zane's Mother: 6:18

    So the water doesn't come in through the doors and the windows. It comes up through the soil in the basement slowly as the water table rises, and it came across a landfill site, an historic landfill site that was never declared. On anyone's searches and even after Zane passed, the local authority said this land has never been a landfill site. Go away and stop creating hysteria. This was to the BBC Then. It's since subsequently been found out that it was an illegal tip. It was a historic landfill site. It was condemned by the MOD, commandeered by the MOD during the Second World War, and they tested tanks and ammunition on this land. None of it we ever knew. We thought our biggest risk was to get flooded and you asked the question of what happened before. It was like a military operation. We had all of our belongings were upstairs or on bricks. The house was habitable, it was clean. Our biggest concern was whether the water would breach the habitable areas and, like I say, it was like a military operation 24-7,. We were monitoring, we had levels, we were taking the markers, we had electric pumps and we were adding more electric pumps. You can't empty the basement when it's the water table, but we were dealing with the panic of the flood.

    Kye Gbangbola - Zane's Father: 7:56

    So what Nicole's saying is that we ensured, using our electric pumps, that all habitable areas were dry so we could utilize the house in a normal way. And one thing you would need to know is that the hospitals were overwhelmed with unwell people. We discovered from the freedom of information papers and that's important because it wasn't just us that were recipients and unwell, there were many others to the point that it uses the words hospital overwhelmed with unwell people.

    Angela Walker: 8:37

    It's hard to believe, isn't it? You're in a flood situation and I'm sure the last thing on your mind was worrying about a gas getting into the property. Now you were obviously seriously injured. Kai, tell me what the doctors said about your condition, because I know in their reports they named hydrogen cyanide.

    Kye Gbangbola - Zane's Father: 9:04

    So I had tests by specialists and my diagnosis is very straightforward and it says that I'm paraplegia due to hydrogen cyanide poisoning.

    Angela Walker: 9:20

    Let's talk about the inquest, if you don't mind. I know that the in the inquest they raised the issue of carbon monoxide. Now, that's something that you have always disputed and I know that the evidence does not point to carbon monoxide. Can you talk me through that?

    Kye Gbangbola - Zane's Father: 9:40

    Yes, so the information from the FOI was that no carbon monoxide was found. So there's no carbon oxide, so nobody can be injured or die from a substance that wasn't there. It confirmed also in the FOIs that hydrogen cyanide was detected multiple times and the national incident record book, which is a document written immediately that went from port and down to emergency cobra on the day that Zane was killed, only talks about hydrogen cyanide. So the whole matter of carbon monoxide is a misdirection.

    Angela Walker: 10:27

    Now, there was a pump, wasn't there? There was a gas operated pump that you'd hired, perhaps, to pump water out from the basement, and that's what was blamed in the inquest. Can you tell me about that pump?

    Kye Gbangbola - Zane's Father: 10:45

    Yes, so when areas flood, there's usually and storms because there were storms, the first storms attributed to climate change ever. The electricity outage means that you can't use the electric pumps show and so you have to use petrol pumps. So many of our neighbours were using petrol pumps. Our house never had the an electric outage so we could continue using electric pumps. So we discovered years down the line, although during the inquest there was expert who said that the petrol pump that was at the rear of our home, just in case we needed it, could never run because it had a choke, that was defective and and the. If it had been put on for any period of time Other than the period that we tested it to see if it was put on for any period of time, it wouldn't work. It would run lumpy and stop. So the petrol pump is immediately out of picture.

    Angela Walker: 12:01

    So how did you feel then at the inquest when they kept talking about this pump which you didn't use, and what, how, how did you feel about the whole raising of this defective pump?

    Nicole Lawler - Zane's Mother: 12:15

    This was an inquest where the jury was denied legal aid, representation was denied, witnesses and evidence was denied. Public interest immunity Was required, human rights investigations denied, victims were scapegoated and blamed. We had six organisations and public authorities represented by the best White-collar crime QCs in the land, all funded for years by legal aid. Even the coroner had legal aid An additional legal QC representation. The coroner changed the day that my son died, my son who I held in his arms until his fingers froze around me. I'm not saying that to upset you, but to just share with you that I shared every moment of Zane's last hours and the coroner said that my son died the day before, on the 7th of February. This was the kind of things that were coming out in the inquest. You can't make that up. The Paramedics came, they tested Zane's body temperature it was all normal on the 8th of February and it documents how his temperature goes down over the time and yet the coroner said my son died the whole day before. This was what we were dealing with at the inquest. You only have to scratch the surface and look at the evidence to see that the actually the plausible deniability of a pump was just something else in me that there is far more controversial outcomes than just that pump.

    Kye Gbangbola - Zane's Father: 14:07

    They, I just add that it was a complete misdirection and the terrible truth is that this is a child that died horribly when his home was infused with the nerve agent hydrogen cyanide.

    Nicole Lawler - Zane's Mother: 14:25

    It's like screaming in a forest for anyone to just sit and look at the facts with us to just go through that piles and piles of you know room full of evidence that we've got and absolutely nothing. No evidence to ever say that pump was ever used. That pump could even work. You know. There is just nothing. In the fire brigade said the pump had never been used the moment that they came in.

    Angela Walker: 14:50

    Well, let's listen to what the fire brigade said, because Matt Wrack's from the fire brigade's union and he has spoken out in support of you and he's calling for the truth about Zayn. Let's hear what he had to say.

    Matthew - Fire Brigade's Union: 15:04

    On behalf of the union. I wanted to start by saying Something about paying tribute to a Zayn's family, I think, who have shown An absolutely remarkable level of dignity. Also Determination, because I think one thing that we find when we begin to ask questions sometimes is that it takes determination to see those questions through and to get to the answers. And In this case, as has been set out, there are questions which need to be answered, which have not been answered, and how can we make changes, how can we make changes in relation to safety, unless those demands for an inquiry are addressed? As a union, we have our own Experiences of this, which I think come on our attitude to Zayn's campaign. We deal with serious and risky incidents, as I'm sure everyone is aware. Our members attended to this incident, our members took evidence at this incident, our members have evidence which is relevant to this case and there is therefore a frustration that those questions have not been adequately addressed.

    Angela Walker: 16:28

    So that was Matt rack from the fire brigade's union, and he was talking at a special event that you organized, which was to mark what would have been Zayn's 16th birthday. He wasn't the only person to speak out in support. I know you've had the support of Green Party peer Baroness Natalie Bennett. Let's hear what she had to say when she addressed the house of Lords.

    Speaker 7: 16:54

    In 2014, a seven-year-old boy, zane Bangbollah, went to sleep in his bed. He never woke up and his father sleeping nearby has been forced to use a wheelchair. Since the Fire Brigade Union, the PCS Union and many other people, as his father, kai's doctors were, were convinced that Zane was poisoned by hydrogen cyanide gas that came from a landfill site nearby, carried by floodwaters. Now, before this tragic event, the Environment Agency had actually protected its own staff when a nearby building with a special membrane in the foundations to ensure there was no risk of an event like this. Now, as the noble and learned Lord said, the European Convention on Human Rights calls for an equality of arms in trials. There was no such equality at Zane's inquest. The weather that led to that flooding was linked to the climate emergency. Several years after this, kai Zane Bangbollah said we need to unlock the doors for the truth to come out. Had there been equality of arms at Zane's inquest, we might be much further down the road to getting a change in the law that we all need to keep us safe.

    Angela Walker: 18:19

    Now it's so frustrating to you because there is a huge amount of evidence which indicates hydrogen cyanide was responsible for the death of your son. And it's interesting because at the beginning we were talking about this landfill site, which initially they denied there ever was a landfill site, but you've shown me previously the plans that prove that was there. How do you feel about these inconsistencies that keep coming up when you're calling for a public inquiry and this kind of bogus information which is being put forward? How does that make you feel?

    Kye Gbangbola - Zane's Father: 19:05

    It seems that the misdirections were deliberately placed from day one, and what that does is disempower anybody that seeks to find the truth, and so you end up with complete dysfunction. The best way to example that is with things like a party gate and some of the other injustice cases with party gate If people don't tell the truth of what happened, how are people going to be able to investigate it and find out? This leads us to the simple conclusion that Zane needs a full and fearless, proper investigation of the facts, data and evidence surrounding how he died, and that's why you would have the independent panel inquiry with full disclosure, and that's how Hillsborough got the truth.

    Angela Walker: 20:00

    And I know you've had the support of the Manchester Mayor, andy Burnham. Let's hear what he had to say, because he sent such a strong video of support for you and he is calling for a full investigation. Let's have a listen.

    Andy Burnham - Manchester Mayor : 20:14

    This is a message to confer my 100% support for Kai and Nicole as they deliver the petition to 10 Downing Street on the occasion of their son's 16th birthday, calling for full disclosure and an independent panel inquiry into the death of their son, zane. It has always been clear to me, from the moment I first met them, that the Bangbole family have been victims of a serious injustice. How can a seven year old boy die in his own home, his dad left in a wheelchair, a home that had high readings of hydrogen cyanide and there not be a full investigation into the circumstances as to how this happened? Kai and Nicole must have the truth about Zane. Natural justice demands it. Please support Kai and Nicole, get behind the family and let's all work together for truth about Zane.

    Angela Walker: 21:14

    Now I contacted Spellthorne Borough Council and invited them to talk to me or invited them to send a statement, and they've done neither. I also contacted the Cabinet Office and I've not had any response at all to my inquiries. What do you make of that?

    Nicole Lawler - Zane's Mother: 21:34

    We had a petition with 117,000 signatures, that we marched to Parliament and delivered 117,000 signatures for a public inquiry and we've heard nothing. So I'm not surprised.

    Angela Walker: 21:51

    And I know that you're really in support of this Hillsborough law. Actually Explain to us what that is and how that might help as you search for the truth about Zane.

    Nicole Lawler - Zane's Mother: 22:03

    Zane will never win. We will never win. Zane has been taken from us. But if anything can come from this, if future deaths can be prevented, if families don't have to suffer a decade of fighting like we have, then we are all in support of a duty of candor, transparency, jail for those in authority that lie, then we are in absolute full support of that. Something good will come from it.

    Kye Gbangbola - Zane's Father: 22:36

    And the Hillsborough law talks about having a public advocate. But remember Hillsborough had to have their human rights returned to them before you could have the independent panel inquiry. So whilst any government and Zane has his human rights removed, he cannot get the truth. So in the case of Hillsborough there were 64 police statements that couldn't be investigated for their truth until people had their rights restored. Then you could have a full and fearless investigation around all of the evidence. So Zane will require that first. But in general, hillsborough law is, as Nicole said, about making sure that there's parity of arms and, as Nicole outlined, we had none. We were quite literally a naked David against an army of Goliaths with weapons full to the brim bombarding us whilst we were absolutely naked. Hillsborough law also brings in a public advocate, which is where you have expertise that ensures that evidence is collected properly to assist people in their justice cases. There is also the issue of candour, which means people must tell the truth and if your boss or anybody asks you to lie, you can, within the law, say that I'm afraid I can't do that. We have to tell the truth. So Hillsborough law duty of candour is very significant. Plus if anybody is found to not be telling the truth, they would be criminalised. So Hillsborough law is significant in justice cases, but until Zane has his human rights restored by way of an independent panel inquiry, our time is spent well in supporting such things.

    Angela Walker: 24:41

    Do you think you'll ever see a public inquiry? I mean, you've been denied it under these Tory governments. If there was a change of government, do you think you know? If the Labour Party came into power, do you think you might see a public inquiry then?

    Kye Gbangbola - Zane's Father: 24:58

    Zane is in the Labour Party manifesto as one of the burning injustices of our time. Coursing was a child, we must always remember, and it's not usually in the conscience of British people to do these sorts of things to children. So, being in the manifesto when the pendulum swings, we hope that Zane will have that opportunity, or we expect, as it's written, that Zane will have his independent panel inquiry.

    Angela Walker: 25:30

    Let's hear a clip from Keir Starmer, because I know he is spoken out about this.

    Kier Starmer - Leader, Labour Party: 25:36

    This is such an important case on its own individual facts and also because of what it exposes about the ability of our institution of mechanisms to get to the truth in critical cases. And I've had the pleasure of privilege of meeting with Zane's parents a number of times when I was in the Shadow Home Office brief, but I stayed with them, not with Zane. I moved to Brexit because I just think it's such an important issue there are so many levels at which things need to change, it's hard to know where to start. You have the absolute tragedy of what's happened over, the facts and the emotional impact that has, and then you have the overlay of how the coroner's court works for people in this position, with the inequality of arms because of the legal aid restrictions, the very facts of people having to represent themselves and to enable we have this discussion, not only try to master ex-verus, but also the pure and difficult emotional exercise of going through what actually happened. And to have that without the proper sort of protection of a legal team is just incredible.

    Angela Walker: 26:55

    Jeremy Corbyn spoken out in support of you and your campaign, and one of the things that he flagged up was the possibility of other similar secret landfill sites across the UK. Let's have a listen to what he had to say.

    Jeremy Corbyn, Former Leader, Labour Party: 27:11

    So the family of beings with the most unbelievable stress and grief. To lose a child is awful for everybody, but to lose a child in wholly preventable circumstances is even worse. So the questions then asked are asked how did that pollution take place? How did that poisoning take place? Was there a military dump alongside it where Former chemical weapons have been dropped, and audio positive rather? And how many more sites are there around the country protected by official Secrets Act, protected by the blanket cloak of the Department of Defense that doesn't want to talk about where they've placed their very, very dangerous waste anywhere around the country? And so, in campaigning for Zane's law, what we're doing is campaigning for the truth about the dangers that so many communities face and do not realise it. They do not know where this stuff is, they do not know where it's dropped, they do not know what water courses it is polluting and what effect that will have. I don't want there ever to be another Zane death in this country.

    Angela Walker: 28:29

    What do you think, then, about what Jeremy Corbyn said there about the possibility of similar sites in the UK?

    Kye Gbangbola - Zane's Father: 28:35

    We are aware from the British Medical Journal that 80% of people in this country live within two kilometres of landfill and their studies show well in excess of 35,000 landfills across the country. And we are also aware that there was dumping that occurred in unregulated landfill. So there is a concern across the country, as the climate changes, that there will be more harm being done to people than the flooding itself. And this is the story of everyone that hears about Zane. What happened could have happened to any one of them. It's just we didn't know about the landfill, like many people do not know about the landfill. Flooding has become an annual event and you only have to put these landfill maps over the top of the flooding maps to see that there is a potential of this happening again, and that's the reason why Natalie Bennett has pursued Zane's law in a bid to protect the people of this country, much as other developed countries have such laws that protect them. That means that if a community is harmed by living in proximity to dangerous land, then that land, they can rest assured, will be dealt with and cleaned in the interests of that community.

    Angela Walker: 30:22

    We've talked a lot about what happened to Zane, but can you tell me what Zane was like?

    Kye Gbangbola - Zane's Father: 30:30

    He concedes over our shoulder. Zane was a beautiful seven year old boy. He was very bright. He read at the age of 16, when he was six, but he also was very talented. He was a black belt Taekwondo leader, to give you an idea, before Zane did a grading and there weren't enough belts. So Zane specifically asked if he could give his belt to the young girl next to him and he said I'll collect mine later. Zane never collected that belt Great question. So he's a very kind young boy. He liked to help people raise a lot of money for charities and Zane was also a little environmental activist. He's a young science technology engineer in Maths Ambassador. He went to a very good school and Zane said that people believe sustainability in being green and he's article for this. This was in an article that was written. He was interviewed, much as you're interviewing us, and he said that people think sustainability in being green is about looking after their gardens, but it's about looking after an even bigger garden, one that belongs to the whole of the world.

    Nicole Lawler - Zane's Mother: 32:04

    With all of these campaigns there's a number Hillsborough 97,. Justice for the 21, 21. But with Zane, he was just the number one to the world, just one person that died, but to us he was the world and we built our world around him. There's no greater love and when he passed, prayed for days that I wouldn't survive, but I did. We have to know that we've survived for a reason, and the next to undo the lies that dishonour our son and to make sure that he will forever rest in peace and that this will never happen again. Zane had more integrity than any of the people that we have come across and that they have kicked his death into the long grass, but we are here to make sure that his voice is heard. He may have only walked this earth for a few years, but his voice will be heard and we will get the truth about Zane. If it takes a lifetime of fighting, we're 10 years in and we're strong. We've lost everything. We've faced our greatest fear and it's not until you've reached the button that you realise your true strength. You've nothing to lose and we will ensure that Zane gets the truth.

    Kye Gbangbola - Zane's Father: 33:30

    We are 10 years in and we've asked every Prime Minister just to tell the truth. If this had happened to your children, you'd have had truth. Why not give our children the truth?

    Angela Walker: 33:44

    Thank you so much for sharing the story about Zane and for telling us what this beautiful little boy was like, and I think you're so fearless and you've got my utmost respect because you've been through a terrible, the worst thing that any parent can ever go through. And thank you so much for talking to me today about your fight for the truth about Zane. I'm journalist, angela Walker, and today I've been in conversation with Kai Bangbola and Nicole Lawler as they search for the truth about Zane. I hope you've enjoyed today's podcast. Please do subscribe and follow, because that means, due to the algorithms, more people will get to listen to this podcast and if you'd like more information, check out my website, angelawalkerreportscom. Until next time, take care.

  • Angela Walker

    Host

    00:09

    Imagine being told you've got heart failure and you need a transplant within the next year to survive. That's what happened to my guest today, at the age of just 41. But so far, thanks to pioneering surgery, he's avoided the need for a heart transplant. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today are BBC sports reporter and friend, Chris Slegg, and clinical psychologist Mina Arvanitopoulou. This podcast is sponsored by Doctors Net UK. With over 250,000 members, Doctors Net UK is the UK's largest professional network of GMC verified doctors. They're a community that enables you to make connections, find support and improve your clinical knowledge and practice, all in one place. Join your colleagues today. Membership is free. Mina Arvanitopoulou, Chris Slegg, thanks very much for joining me.

    Thanks for having us, Angela.

    01:10

    Thank you for inviting us.

    So, Mina, I'm looking forward to hearing from you and to finding out how you help patients like Chris. But first of all, Chris, let's find out about your story. When did you first realise that you had a problem with your heart?

    Chris Slegg

    Host

    01:27

    Yeah, I found out I had been born with this really rare condition called Ebstein's Anomaly back in the year 2000 actually. So I was 22 at that point. I was at Sheffield University doing a journalism degree and I was just finding it increasingly hard. Sheffield's a really hilly place and just walking to lectures I was getting breathless and I fought my asthma, which I've had since birth. It got worse, went to the GP at Sheffield and she listened to my chairs and she said you've got something wrong with your heart. We need to send you next door to the hospital, which is one of the best hospitals in the country Sheffield Heart Hospital. Very quickly, within a couple of days, they told me that I had this really rare condition.

    02:04

    I was leaving university that summer, which referred back down to Guy's and St Thomas' Hospital in London, where I've been ever since, and I was told that summer I was going to need surgery straight away to repair my leaking tricuspid valve. A second opinion meant that surgery never went ahead and with hindsight I think that was the right decision and then nothing really did happen until much, much further on. I had my first open heart surgery in the year 2020. In the end We'll come on to that later.

    02:33

    But yeah, it was when I was a student at Sheffield that I found out I'd been born with this congenital heart defect. I'd had it all my life. Looking back, it makes a lot more sense. I really struggled playing a sport at school. My inhalers never made any difference. I don't think that was asthma that was affecting me in my sport, although I did also have asthma. But yeah, it was when I was a 22-year-old student that I was diagnosed with this condition, which has become increasingly hard to live with. But I'm feeling pretty positive now about the challenges that probably still lie ahead as well.

    Angela Walker

    Host

    03:03

    So what exactly is this heart condition that you've got? You mentioned the tricuspid valve. What's going on there?

    Chris Slegg

    Host

    03:10

    Yeah, so Ebstein's Anomaly. It only affects one in. I think 200,000 people who are born are affected by this. It's a really rare condition and it's a disease of the right ventricle and also the tricuspid valve. Now, most congenital heart defects I've only learned this recently are of the left ventricle. Much more is known about those defects. Nearly all the drugs that exist are for the left ventricle. There's very little that can help the right ventricle. My valve was leaking, but not to a terrible extent, when it was discovered. Now there are children born with this who sadly do not survive. There are many who have to be operated on when they are born or very soon when they are very, very young. There's others who could live their whole life and never need surgery. And there's people right in the middle, like me. And when you're right in the middle, like me, no one really knows what to do.

    03:57

    I've learned that over the last few years and that's why I had this kind of confusing news when I was 20, we're going to operate, then we're not going to operate. And every year it was like we're not going to operate, we're not going to operate, we're not going to operate, we're not going to operate. We think it's the best thing to leave it until I got to the age of what? Was it 41? When they said no, I'd have been 40? And they said we need to operate. Now the leak's got. It's gone from moderate to severe. We need to operate. We're going to use this thing called a cone repair, where they twist your own valve into a, into a better shape. It's going to function better. We're very, very confident and I'd always been led to believe this for 20 years. But when we do this valve repair, you're going to be in a much better shape and you won't need any other surgical intervention in your life.

    04:41

    I had that valve repair in August 2020, kind of in the midst of COVID. I was very, very I felt very, very lucky at the time to even have an operation. The hospital felt almost deserted to me, so many people were having things canceled. My surgery went ahead. Everyone was very, very happy with it. They loved the way it looks. The valve repair to them looks amazing. You're going to go out of here. You're going to have a much better life.

    05:03

    Now, a year on, it's the summer of 2021. I was in a really bad place. I couldn't unload my own dishwasher up without my arms hurting. I couldn't hang the washing on the line without my arms hurting. My body was heavy. Suddenly, this condition I'd had all my life. I could feel it and to an extent I can still feel it now. It's only the last three years where I feel this disease and that was really really hard to cope with. But I kind of thought I've been told this has all gone well. You know, it's just, I'm just getting used to it.

    05:36

    I went back for my checkup a year after the surgery and I could visibly see the panic on the face of the people in the hospital. I knew straight away that they knew things were not going to be in my heart and I was told by kind of unfortunately, I was seen by a cardiologist I'd never seen before, because my own cardiologist was having to quarantine because of COVID. You know that was still affecting so many people in so many different ways and someone I'd never seen before told me you're going to need a transplant within a year and I fell apart. I fell apart because I had never, ever been prepared for that. It had never been mentioned to me. It had always been mentioned. We're going to repair the valve. We're really confident and obviously you know, nothing's ever guaranteed. The idea that I would need a heart transplant was never being said to me and I went home in a state of shock and I was too shocked to tell anyone. I didn't tell my wife.

    06:27

    For a couple of weeks I started to research heart transplants and with the best will in the world, I could only interpret everything that was written there positively in a very negative way because it had never been something I thought was going to be part of my life.

    06:41

    And you know there is still. I don't want to take away hope from anyone who's in that position. There will be people listening out there who may need a heart transplant, who are about to have one, who have one, and there's hope. There's plenty of hope. I've spoken to people since, but when I learned about it and I read the stats and 50% of people survive more than five years I interpreted that as well. 50% don't. And obviously then you start to think what if I can't find a heart? What if my body doesn't accept it? And these are all things I may have to come to again, because the next step, if I need a next step, will be a transplant. There's nothing else I can do beyond what they've done, which we'll come on to later, but getting that news was something that sent me into a really difficult place mentally, and it's only thanks to Mina that I was able to get out of that.

    Angela Walker

    Host

    07:26

    So there you are. You go into hospital to have a checkup on an operation you've had to repair the valve and you get this life-altering news. You said it took you weeks before you could even share that news with your wife. What was going through your mind?

    Chris Slegg

    Host

    07:43

    To me. It felt and I am getting emotional now talking about it I felt that suddenly my whole future looked very, very different and I thought the minute I told anyone else about that, the whole of their future would look different too. And for as long as I could keep it a secret, in some ways it wasn't really real. It wasn't something we all had to admit and we all had to face. And I knew that the minute I told that news, not just to my wife but to my mum and my dad, that everything would be different for people and I wanted to delay that. And then my mum kind of realised I was holding something back and I just told her. I think I'd probably even told her just before. I told my wife and yeah, I mean, I have the most amazing wife, the most amazing parents, the most amazing friends, the most amazing colleagues, of which you were once one.

    08:44

    Angie it was great, great memories of working with you. Despite all of that support, I didn't feel I don't think strong enough, the right word. I just couldn't get myself into a position where I could articulate this and I didn't want to be the bearer of bad news. I'm so lucky until this point that I still have parents in very good health I have, my wife does. We haven't really had any sort of really life-altering news to have to face together and I felt like, oh, I'm kind of the one ruining the party if I have to tell everyone this.

    09:20

    It's in the run-up to Christmas as well. You're kind of thinking, try and put it off. But I wasn't able to do that and I'm glad I didn't. And the minute you share news it becomes so much easier. So everyone would be my advice to everyone Talk to someone, whoever it is, because the minute you start to share news, you can start to embrace that as your reality and other people around you. They're growing up and they realize they have to embrace it as part of their reality too. And all of us here we would do that to our loved ones too. So yeah, the minute I was able to share the news, things did start to get easier, but I still and it was much, much later before Mina came along, I still needed professional support, despite having an amazing support network around me.

    Angela Walker

    Host

    10:09

    Mina, it sounds from what Chris is saying that he was so worried about the effect that his illness was going to have on his loved ones. What he's talking about here he's not even talking about concern for his own health really, he's talking about the impact of his condition on his family. Is that something that you hear a lot from the patients that you work with?

    Mina Arvanitopoulou

    Host

    10:34

    Yes, absolutely and obviously. I'm not just talking about Chris. Everyone is very different. Everyone of us is very unique and we all have very different circumstances and we have different phases in life, but this is something that we see a lot for slightly different reasons, for people as well.

    10:54

    Sometimes this involves a fear of letting people down, perhaps, but I can also feel that and I'm not talking about Chris now, I'm generalising it can also feel that perhaps we have a lot of identities, lots of roles, lots of commitments in our lives and we feel that we're failing. There's a sense of failing in something, a sense of letting people down, but also us, perhaps not being the provider, for example, or the protector. We have these roles in our minds a lot of the time. We see that in men, but also in women. We can take slightly different contexts or formats, but yes, ultimately it's also about obviously considering our own pain and suffering, but also we can absorb our patient sorry, our family's pain and suffering and anxiety.

    11:49

    And I think a very important point that Chris made is about communication, because a lot of the times, what happens is that when patients have these news, they don't communicate straight away or even for a long duration they keep things to themselves about how they feel, even if the families do know about what's happening, but they tend to hold on to the most uncomfortable feeling. So then that creates it can create a lot of distance. The family doesn't know what to do, how to support the patient. They have their own understanding, their own assumptions about what a patient may be feeling, but also the patient is not fully aware about how others feel. So that creates a lot of distance and lack of support, because you don't have that ability, that opportunity really to get and to receive and give the punch.

    Angela Walker

    Host

    12:47

    And Chris, I know that you're a devoted husband and a dad as well. You've got two small children, and I know that one of your greatest fears was for your kids, wasn't it?

    Chris Slegg

    Host

    12:59

    It was the overriding thing that upset me, having two small children, who are now eight and five, but were a couple of years younger at the point I got this news, just before Christmas 2021. I, as I say, I interpreted the need for a transplant, which I so far managed to avoid, in the most negative way I could interpret that news and although I wasn't receiving a terminal diagnosis and my heart goes out to anyone out there who has or will it felt very close to that for me. And what I've learned also is all of my life and I think we all have this and I certainly had it when I've learned at the age of 22, I had this serious condition how you think you would cope receiving bad news Certainly my instance, anyway, I can't say it's true for anyone how I thought I would cope in the event one day of receiving bad news was a million miles away from actually receiving really bad news. I was no matter how prepared I thought I would be one day perhaps to get that news. I just couldn't. I just wasn't anywhere close to being knowing how to deal with it. And yet the thing that upset me most was how would I ever tell my children, how would I prepare them if the very worst situation comes along and I have to be honest, I'm not completely there with that one yet either, because fortunately I'm not yet a situation where I have to do that but I felt before Christmas 2021, this is a beginning of the end.

    14:28

    I guess, not wanting to sound over dramatic and I'm going to have to prepare my children for the fact that they might be losing their dad and thankfully I'm not close to that yet but I was every day breaking down crying about what it would mean to my children if they lost their dad early on and how they would cope. It was more about, it was almost I was feeling how would they grieve, how would they be bereaved? It wasn't mourning my own loss as such. It was kind of mourning what my loss would mean to them. And just from a couple of people I've spoken to over the last 18 months with very different health conditions but serious, that seems to be something others have had to wear.

    15:14

    I think a lot of us feel like we and again I don't know if I could, but a lot of us feel like we could cope with that's going to happen to us, but coping with what it means to your family, your wife, your kids, your parents, your friends, and actually I'd say all of those things there, all those other people I mentioned wife, parents, friends. To me anyway, that was a million miles away from what it would mean to my kids. It was much, much harder for me to deal with that, what it would mean to my kids and to any of those other people, because I thought they'd get over it, they would. They're growing up, they'd be obviously very upset, they'd find a way, but I couldn't work out in my head how my kids could and that really really, really troubled me.

    15:58

    For well over a year from the day I received the news, I was well in this guy's eyes, I was definitely going to need to transplant over the year, probably until I started seeing Mina every single day. I would cry about that thought every single day for just over really a year until I met Mina and then I was able to start to deal more positively and now I feel a lot, lot more positive about the future I have and the present that I have.

    Angela Walker

    Host

    16:27

    Mina, when we're parents, we just want to protect our kids, don't we? And then for someone like Chris, he has this major, life changing news and it's completely out of his hands. He can't be that protector of his kids because there's nothing that he can do. Like, how can you help people like Chris come to terms with these feelings, overwhelming feelings that Chris said you know he was upset and crying about this every day because what could he do about it? How do you help people with feelings like that?

    Mina Arvanitopoulou

    Host

    17:02

    Well, there isn't one way that fits all, so obviously it depends how everyone is affected. I think most importantly is to provide that safe place to start reflecting on the different layers of impact. So, as Chris mentioned, one layer is how he felt this would affect his family, and there are so many other layers as well. Others are more important than perhaps somewhat more important than others. But I think most importantly is to start sort of encouraging that acceptance that Chris said. It will take time Coming to terms.

    17:40

    It's not something that happens overnight and it really takes a lot of effort to understand all the different very unpleasant emotions that someone has experienced and could experience. You know the grief, the sense of loss, trauma perhaps in a lot of cases you know Chris has had a few surgeries and the trauma of hearing those news. That shows us how the trauma is not only on the body but in the mind as well About fear, about your own loss, the uncertainty, the lack of control as you said, you use the word control. That is a very common thing not feeling in control about the future and all of these different unpleasant and very devastating situations and unpleasant feelings that someone has. I think there needs to be a safe place to be reflected, explored further, to allow the person to realize, understand themselves a lot better.

    18:39

    Something that I think it's a few points to make that are important is that a lot of people and we see that so much in cardiology, but also with other conditions as well there is a confusion between weakness and vulnerability. So, finally, if our body malfunctions in some way, we start feeling weak in ourselves. We think others see us as weak as well, and I think this is something that we need to start differentiating that our bodies can be vulnerable but that doesn't make us weak, and sort of concepts like that. It takes time to reflect and understand how they apply to us. But also there are ways of encouraging, perhaps leaving more in the moment, in the here and now, because this is the only thing we can control, this is the only thing we can be certain of.

    19:32

    And then there is another very important point, which we call post-traumatic growth, which is learning to live and to get a lot of meaning. Through adversity you develop other aspects of yourself that you haven't developed before before the challenges, and through that I guess one of the goals of therapy is to also the person learns to live a more meaningful life. You start evaluating how your life is how you'd like it to be. You start visualizing how you'd like your life to be, doing things that matter really matter to you.

    Angela Walker

    Host

    20:16

    That's really interesting because I had a colleague and he was always really happy and I said you always got a smile on your face, you're always really happy and he told me that he'd been involved in a near fatal car crash and after that he was so happy to be alive that he he it changed his whole outlook on life. So it's interesting that you mentioned that, chris. Like, did you feel resentful? Because you were like a young man, you know, you were a successful TV reporter with a beautiful wife and children. You're in your prime and your body's letting you down. Was there a resentment there? I don't think that.

    Chris Slegg

    Host

    20:58

    I don't feel that thought wasn't there. It was a real fear. It was a real fear of, yeah, how, how quickly might my life deteriorate, my quality of life and, like I'm so lucky to have everything that I have physically and the health that I still have and the health that I have anyway. But it was the fear of if my, if this person, this medical person, is telling me my luck, my heart can only survive another year. Then and and this was this, was the biggest fear, this was part of the biggest fear was I? What on earth? How, what is my life going to look like? I don't understand. You know, what is going to be left? And another fear I had was I had come out of hospital in August 2020, having had my tricuspid valve repaired, and everyone was very happy and everyone had pretty much assured me your life's going to be better. And again, obviously, I said there's no guarantee that I don't hold anything against them. That was a medical opinion. They looked at it. It looked good, they're happy, you're gonna go, your lot, your quality of life's gonna improve the year down the line, I felt like I had one bar left on the back, three. That was my heart and I thought they're telling me now that you know I'm gonna need a transplant, and this was before we got to the thing they've done in.

    22:16

    Instead, I thought, if anything else goes wrong, I felt like I couldn't not necessarily trust. But I couldn't believe anything anymore. I thought if something goes wrong again, there's gonna be nothing. I mean I'm gonna have no energy left at all. I couldn't imagine how I'd be able to carry on doing my job as a journalist, as you know, working in TV and radio. It's physical journalism, it's not. It's not just written journalism, which has its own challenges anyway, but physical journalism getting to different places, multiple places in a day, helping your camera operator carrying their very heavy kit around.

    22:48

    I don't think I've ever had that feeling of why me. That hasn't come to me and I don't blame anyone that it's come to. I think, as mean as said, you'll never meet anyone else who's in exactly the same position, exactly the same circumstances, who will deal with things in the same ways that. That resentment feeling wasn't one that came to me, but it was a massive fear of what my life is gonna look like and what it's gonna mean for my family just even getting the kids to school.

    23:14

    So at that point, as I'll say, two years ago, my having to push my youngest in a push chair was beyond me, and I couldn't imagine how am I gonna do the school run when my wife? What's that gonna mean for her? Just, you know, every single day of your life is gonna be impacted in a different way, and those are all things we may have to come to again one day, but right now I'm in a much better place, health wise, than I was in 2021, physically and mentally. A lot, lot better too. So, if anything, maybe receiving the bad news that I did in the way that I did, brutal though it was, has got me preparing for for a long, you know, mid to long-term future sooner than I might have done, so that's probably a helpful thing so when you and shared the news with your wife, sonia, how did you feel after you'd done that?

    Angela Walker

    Host

    24:06

    because that was a bit of a milestone, wasn't it? You'd kept that as a secret, your condition up until that point.

    Chris Slegg

    Host

    24:13

    I felt a lot better and I was. I was worried I was gonna feel a lot worse and I was worried. It was from that point on, both allies were just gonna be kind of thrown into disarray and negativity. But yeah, from the minute I it was, it was physically. You physically feel the weight of a secret lift off your body and also you take strength from the reaction of this person that you love, that loves you, who deals with it in a really strong way as my parents did too, because you know they're not, they're not gonna fold. They know they need to be strong for you and through that you take greater strength and you realize, obviously they are able to encompass this as part of their reality, to obviously they know it might change things, might change them immensely, it might change them to a smaller degree, but they are now ready for that change to. I mean, you're not gonna be able to keep our secret forever with this kind of condition.

    25:10

    So I felt I was so great, I was so happy that I'd been able to say it, because I've been keeping it inside for two weeks and yeah, that would be my advice to anyone. You know, don't bottle it up. You know it's tough, but you've got to. You've got to face reality and you've got to allow the loved ones around you who are going to be impacted to to face that too and to face it together. So you know again, not everyone has that, not everyone, listening, has that. And for anyone who doesn't have family around the mind you know I'm so lucky to have that I hope they have a friend they can turn to. If not, you know, find someone there's, there's support network out there. Again, I was so lucky to be offered counseling through my hospital with me and not everyone will have that. I feel so fortunate to have had it. But just find someone to talk to because a minute you can share news, it, just, it just helps it, it brings it, it makes it reality. And you realize just suddenly or I did at least.

    26:11

    I don't want to speak for everyone, because it's just one percent of you is, oh, yeah, it's okay making this reality. And then two percent of you is like, yeah, it's okay making this reality. And then the way I live now I've fully embraced my new reality and there's bits of it I hate, you know, but I've, I feel a lot more in control of it now. I think one of you said earlier the loss of control. That was something I've really struggled with because, yeah, you, you do, you realize like, yeah, for the first time really facing your own mortality. And I think that says me back to what I said earlier about we're all kind of think, we know we're prepared for the worst news, but actually getting it suddenly made me feel like I wasn't in control of anything at all. And now I feel like I am in control again.

    Angela Walker

    Host

    26:56

    I I'm realistic that there's could be some other bad things coming down the line, but I feel in control yeah, so you'd have this terrifying news that you would probably need a heart transplant within a year, but instead you actually had a different pioneering procedure. And tell us about that, chris, because that's brought you to where you are today. You're over a year since you were told that you would need a heart transplant within a year, so talk through what you, what the surgery you did have and how that helps and again.

    Chris Slegg

    Host

    27:31

    It's so amazing how you know there's so many different opinions out there and different cardiologists will think different things and, you know, I truly believe the vast majority of them are doing their very, very best, working in a very tough field and making the cause that they genuinely think are right. But I had a second. I went for a second opinion. I spent pretty much every second of free time that I had in the first half of 2022 getting my medical notes into a position to send out to the, the United States, where there's the Mayo Clinic, which is probably the leading clinic anywhere in the world regarding Ebstein's Anomaly. If they you know they will they've done more surgeries there and I even considered traveling to America to actually have an appointment. I was able to have one online for a, for a cost which, fortunately, I was able to afford. My long-term cardiologist had also done research and he suggested what we should do is this operation called the Glenn, where they take the main vein out of your heart and plug it straight into the main artery, and that takes about a third of the pressure off of your right ventricle. It means it has to do less work. He also went to Bristol Heart Hospital for a second opinion. They agreed with him and, independently, through what I was talking to with Boston, they agreed to, and it was only at that point. So this is about summer 2022, when I felt reassured that if kind of three different people my long-term cardiologist and the Mayo Clinic in America and Bristol Heart say the Glenn, and they sent me. Bristol sent me a document and it basically said this is your only option. It's that or a heart transplant, and to me it was just. It was a very easy decision, but I didn't have the trust it was actually going to work. So, having already had major sorry, I got bit of a cough having already had major heart surgery which had made my heart a lot worse in many ways, I was really worried that this wasn't was going to leave me in an even worse position. And so this second, second major heart surgery became a real mental challenge in the way that the first had never been. The first, to me, had just been a physical challenge, horrible though it was. Go into hospital, have your heart corrected, spend three months sadly not being able to do much, not be unable to work long time back to recovery, but I'd always felt in 2020 that tricotabin valve repair was going to be. It was going to be, was going to mend my heart as well as it could, and the future was going to be bright.

    30:16

    I'm now in a position where I'm facing having open heart surgery. Effectively, they don't open the heart, but I've got to open your chest again, they've got to move all the wiring at the your circulatory system around and I was told they'd never done one on an adult at this stage. So the Glen's very rare. I mean ebsticellar anomaly is very rare. A tricotabin valve repair in adults is very rare. The Glen, when it's done, is usually done at the same time as the tricotabin valve repair or, if not, it's usually done within days or weeks because it's become apparent quickly that the tricotabin repair alone hasn't been sufficient. So they do it Glenn that's called a late Glenn when it's done within days or weeks.

    30:58

    Mine was being done over a year and over two years, over two years after my tricotabin valve repair, and I was told this is the latest anywhere in the world we've ever done a Glenn on a well yeah, adult, all child and I was left feeling basically the only thing separating me from a heart transplant is something you've never done on an adult at this stage and I can accept now that I've always been quite a negative person and I could not see anyway this was going to improve things and so going into for this operation almost exactly it just over a year ago, october 2022 I probably went in with a quite a defeatist attitude.

    31:43

    I went into hospital without much faith this was going to make any difference at all and that probably made it all a lot harder as well, and as I was leaving the hospital and I was in tears, I was in tears pretty much every day in the hospital. My cardiologist I inherited I actually went, went to sleep for the operation with the cardiologists I've had for 20 years. I woke up now because he's about to retire in the care of Dr Hannah Douglas and she has a very, very different outlook from anything I've experienced in the past and she could see how troubled I was mentally by this and she just said you've been through a trauma. You've been through a trauma twice. You've been living with a trauma since you knew you had a heart condition and we will get you clinical psychologists. Now I think I don't know, meena, we'll know better, but even at St Thomas's, which is one of the best hospitals in the world. This is quite a new thing, and they've got far too many people to help as well.

    Mina Arvanitopoulou

    Host

    32:43

    Yeah, I had just literally started my job there. I think, yeah, yeah, so I'm lucky.

    Chris Slegg

    Host

    32:50

    And I wouldn't have had the again maybe strength is the right word I wouldn't have had the wherewithal to ask for this kind of support I had. I'll be honest, I had actually sought counselling in the middle of 2022, when I was dealing with the bad news, but I couldn't find anyone who knew what I was talking about really, and again, I don't blame them, but I was kind of looking for a specialism that really isn't there and to deal with what I was trying to go through, and I had a couple of sessions with different people and I was like no fault of their own, but that doesn't help me, and so I feel very lucky that I inherited a new cardiologist. He knew that this wasn't just a physical challenge coming out of open heart surgery.

    Angela Walker

    Host

    33:30

    But it seems like such an obvious thing that somebody who's been through such a physical trauma, the mental trauma of living with a condition that could be life-limiting, life-threatening, they're worried about their family, they're worried about their health, their work, their future. It seems really obvious that people going through that would need some emotional support. Mina, Shouldn't everybody get that when?

    Mina Arvanitopoulou

    Host

    33:58

    they're going through something like that.

    34:00

    Absolutely, and I think in the last 17 years some specializing cardiology in different trusts there is increasing sort of evidence for that, for our values, psychology and physical health.

    34:17

    I've always worked in physical health and from when I started to now there is increasing sort of funding and sort of value in that. Definitely, I mean in an ideal world every sort of significant clinic dealing with a physical injury or physical condition would have a psychologist, because now we know the impact and I know we're not there yet. I am very fortunate also to work in a department where we are left to decide how much input to give to patients. So you know, to use our own clinical decision whether someone might need a few sessions, perhaps mainly normalization, giving some validation to anything up to 20 or more sessions if needed. But also we are trained in delivering different models, different therapeutic approaches, to different needs. So we now can use a particular model which is called EMDR, which is applicable for trauma as well. We haven't had to needed to do that with Chris. That wasn't what he was needed at the time for Chris.

    35:24

    But what I'm saying is that we can tailor our approach to the needs and I think this is so, so important and I know, chris, you know he's done a lot of work around that. By just talking about his experience, this is very rare and I really wanted to really say how much I and all of us appreciate that, because you know a man in here for this but don't often sort of talk publicly about how the particular situation, particular experience but adventure, physical health, sort of affected them. So, yeah, that's the thing.

    Angela Walker

    Host

    36:00

    Thank you, chris, for sharing what you've been going through with us, because I can see, I can feel the trauma. I can feel the emotion is still really raw, isn't it? So what is it that's made you want to share your experience?

    Chris Slegg

    Host

    36:15

    I guess because I've learned so much from it too and I didn't see the condition I had that I've had all my life, that I became aware of when I was 22, which really started to impact me in my early forces. I never saw that as a mental challenge. I never. I always saw it as a physical challenge and I think for I've learned so much in the last year and I've reflected so much and I'm able to do that in a much more positive way I realize now I lived in denial of this condition for a good 20 years and actually, obviously some of that denial is probably beneficial and helpful and I probably needed it, because learning at the age of 22, that you've got this condition, you're able then to not contemplate it every day and why would you contemplate it every day? And I was able to kind of shut it away. But what I realized now was I just completely put it in this little box and I went through one massive heart surgery in August 2020, where it was still kind of I've gone into hospital, been cut open, so my heart back up had all these other minor operations as well. So I had about five before I even had the Glenn one major for kind of comparatively minor and just kind of soldiered on as we all do.

    37:30

    And I think we are at this, our generation is in this position where our parents, they were the children of people who were literally fighting in the Second World War. I've thought about this so much, so sorry to, and they were kind of very much of that. You just don't mown your soldier on. That's the advice from our parents, and our parents do that. They don't mown about anything, they just, you know, and we kind of had that bred into us. And I know, actually, when I was delivered the news about had Ed Steins anomaly, and my mum talks about this a lot actually the cardiologist kind of delivered the news as well look, nothing to worry about. I deal with babies who are literally dying in front of me and you've really got nothing to worry about. And we felt a little bit kind of like palmed off there, like in a way. But then I thought, yeah, no, he's right, what have I got to worry about? I'm not, you know, I'm lucky, my condition is nowhere near as bad as some people, but actually I've realized now that's quite a dangerous thought to carry around for 20 years. Right, of course we will have sympathy for people who are in a worse condition than us. We all do, but it doesn't detract at all from what you as an individual are going through, whatever that is. You know, whatever bad news you've had, it doesn't matter where it is on this health spectrum, it doesn't matter that there's millions of people worse off than you or you know millions of people kind of with what you might see as letter. It's changing your life. It's going to change your life, whatever news you've just had, and that's going to be hard to deal with. And you have to be able to accept that. And I think you know this word.

    38:57

    Guilt comes up a lot, and I was always. I don't feel guilty. I realize now a lot of that is guilt, a lot of it is I shouldn't be moaning, I shouldn't be worrying about this thing I've got because others are worse off. Well, actually, of course, others are worse off and you're always going to have empathy for them, but you have to be able to accept this is changing my life, this is affecting me, and so I never, really I never felt like I wanted to talk about it or let people see it was affecting my life, until I guess it got to the point where it so obviously was and I had to, and then all of this stuff was overwhelming I mean, that's a word that's come up a lot. It was overwhelming, I couldn't deal with it. So why I'm talking about it? For many one of the reasons is because of mental health aspects of having open heart surgery. An open heart surgery in itself and having Dr Anna Douglas describe it as a trauma gave me so much. Yeah, wow, I've been through a trauma. I get that.

    Angela Walker

    Host

    39:54

    Validation, I guess.

    Chris Slegg

    Host

    39:55

    Yeah, that it was. It was like a validation of that. The other reason I want to talk about it is ebstions are normally no one talks about it. You just don't hear about it because it's so so, so, so rare. And when I've tried to find other support or anything written in the past, there's so little there about it. It's there's just not going. As Dr Anna Douglas will say, all of the research is going into the left ventricle. We need more research into diseases of the right ventricle, like ebstions. There's barely any drugs that can help with the right ventricle.

    40:28

    So I want to talk more about ebstions. I want people to become aware of it. I want people who have it to know it exists. For many years I've kind of I've got this thing and I talk about it to people and I'm like what is it? I don't really know. And you know I've now found a couple of support groups on Facebook one in the US, one in the US, one here in the UK which not everyone would find that sort of thing helpful. Sometimes I don't actually find it helpful, sometimes I do. People obviously use it in different ways. Some people share an awful lot of information which, to me, sometimes I wouldn't want to share that much and I feel it hard to see that much. You know everyone's got to gauge what works for them. But yeah, I want to talk about ebstions. I want people to know it exists, I want people to know how it affects people and it affects people in different ways, to different degrees, and I want people to understand that open heart surgery is a huge mental challenge and no one should feel.

    41:16

    I know a friend of mine, and he won't mind me saying, said with the first operation I was just routine. Now, open heart surgery, you'll be fine, and I kind of agreed and I was, like you know, deep down I didn't agree. Deep down I was terrified and it's not routine. It's not routine. You're allowed to be scared. It's going to impact you. You're almost certainly going to be okay, because it's amazing what we can do in this country. You're almost certainly going to be able to recover okay and in most cases you're probably going to have a better quality of life. Fingers crossed, but it's scary.

    Angela Walker

    Host

    41:48

    Being in intensive care is intense Of course, and it was COVID as well, wasn't it? It was. Covid, you're under that obvious pressure that we're all under as well. So you had this procedure the late Glenn and that was just over a year ago. So how did that work out for you? Has it improved your life? Has it helped your heart?

    Chris Slegg

    Host

    42:11

    So we're just over a year on and I had to check up a couple of weeks ago and they said it's stable. They said it hasn't improved, it hasn't got worse. Just for a couple of minutes I felt a bit down, I'll be honest. I felt a bit down that it hadn't improved. But then I felt a lot, lot better that it hasn't got worse, because I was. You know, I'm nearly two years on now from having been told you're going to need a heart transplant within a year. I've still got my own heart and I actually feel a lot better than a year ago. So I kind of thought you know, obviously they've got to tell me what their scans show and they've got to be very honest about their opinion and I wouldn't want them to be anything else. But actually I feel better. I feel physically better. I can hang the washing up, I can unload the dishwasher, I can do simple household tasks. I feel like I have more energy. Mentally. I feel so much better.

    Angela Walker

    Host

    43:00

    You look really well, chris. You've got a bit of color in your cheeks and you definitely seem a lot more upbeat than I know you were a while back. Nina, what kind of strategies can you give people like Chris, who've got this burden that they're carrying around with them? How can they accept this new reality that they're living with and the way that it might change their future? How do you help them?

    Mina Arvanitopoulou

    Host

    43:28

    It's a really good question. There isn't again, there isn't one or five, let's say, strategies that sort of make that happen. I think, again, it's a process. It's important to understand that therapy is not always about fixing something, it's just also a lot. You know, Chris made a really interesting point and said that in different ways a few times about allowing yourself to really validate your experience and to acknowledge the trauma that you've been through.

    43:56

    I think this is one of the first things, and I would also sum it up using the word self-compassion. So it's not about comparing yourself to others, but it's about understanding how certain events or health conditions have affected us and on the different layers. And there's another point that Chris made that I also wanted to touch upon, which is what we call toxic positivity. I don't know if you've ever sort of come across that concept, which is about sometimes we do it to ourselves, Sometimes we do it to others by saying, oh, you know, I'm lucky to have had that, I shouldn't complain, or you're lucky to be alive, and that really what it does, if someone says that to us, for example, at the time where really we're hurting, but someone says, oh, you're lucky to be alive, almost gives us the sense that we shouldn't really complain and that invalidates the whole experience and it really shuts us down. And so I think coming back to that communication is key, sharing our experiences and also a note that I made earlier on what Chris was saying. It's what he was describing, what it was like for him talking about the experience to his family. It's about showing vulnerability and that can really make us still much, much stronger when we feel, when we actually allow others to see that vulnerability in us. There's so much strength in that.

    45:21

    So other things that I would sort of continue, perhaps more generically sort of commenting on. It would be about offsetting realistic expectations. But that's a lot. That's to do a lot with our self image. So there's a lot of work to be done to understand about what our self image sort of involves.

    45:42

    And we said earlier that if the body sort of malfunctions, some people feel really that they're suffering because there's nothing else for them. If they don't feel physically strong, they feel like they're failing in life. So again, it's about understanding other things that they can offer, that they can experience with their mind, with other, with their personality, with the way they think, the way they experience situations, relationships. It's not only about the body Setting realistic goals, risk expectations, find meaningful relationships, invest in relationships rather than materials and money and being productive. We'd rather invest in relationships, relationships with our loved ones, relationships with ourselves. And again coming back to the self compassion. I think that's so important and we see that so little at the moment and in life generally. And what Chris said earlier about how we perhaps a lot of us have been taught to push through and to not really talk about things or admit that we're struggling.

    46:51

    I think if we are able to soften that and to understand that it's okay.

    Angela Walker

    Host

    46:58

    It's interesting what Chris was saying, because it's all about this British stiff upper lip. We're kind of trained, aren't we, to keep calm and carry on even when there's this trauma, and I think, especially for men. Actually, they're told that they have to be brought up in a way that they have to be a protector and that they have to be strong and that it's not really manly to show this vulnerability. But I think what Chris is showing is that it is really important that men do speak out when they're troubled, because you feel so much better for it, don't you, chris? Now?

    Chris Slegg

    Host

    47:36

    Yeah, without any doubt, I definitely feel that is a generational thing. I think my generation is just about the first generation of men particularly who is kind of able now to start to talk about the way things impact them like this. I don't think people much older than me have been able to do that and I really feel for them it's so important to be able to talk and I don't think I'd have thought I would never have been dismissive of that for anyone. But even five years ago I don't think I'd have truly believed it would be something that would help me. And now I feel it to such an extent and I just wanted to pick up on something mean, as I said there as well about material things, because in a way that feels very, very separate to any of the issues I dealt with. But I've never thought of myself as a materialistic person. But one of the very first session that I saw me in or it would have been in December last year and I just saw a couple of months after this latest operation, the Glenn and early days of recovery really looking back and I saw my kids in their nativity play and I just felt really, really sad because I was still convinced this was going to be the first last time. Somehow I was still convinced this is going to be the last time I'm ever going to see them in an activity play, and I remember talking with Mina about that in the first session I had with her and I had this quandary of I need to just quit my job, travel around the world, have this most amazing last year, perhaps, my life with my family, but at the same time, that's not realistic because I could be here for a long time. I can't afford to do that. I don't want to quit my job and I don't want them to have to. I don't want to tell them everything. And why are we doing this? And I've never been able to pinpoint. I don't. I don't even know why talking to me has been so helpful. There wasn't like a silver bullet, there wasn't like this amazing thing.

    49:25

    But somehow through those conversations in the past, I thought, oh, this is just. This is just a day in the park, and 90% of me would still be thinking about work and what I need to do for work. And now that day a day in the park. I know it sounds cheesy, feels so, so special.

    49:42

    It's not just a day in the park. This is time on my kids and I would say now I don't think you can ever switch it off if you care about your job, and I'd say 10% of me might be thinking about my job now and 90% is thinking about that day in the park and valuing that day in the park, whereas in the past I'd have been there. This is just a day in the park thinking about checking my phone, thinking about emails and like I was so worried my life was about to end and I wasn't going to have any time with my kids. Now I value that free time I have, not just with my kids, but, like you know, if you're lucky enough to be able to go to the theater, immerse yourself in it. Don't go there, but still be thinking about work.

    Angela Walker

    Host

    50:19

    I know it's from living in the present.

    Chris Slegg

    Host

    50:21

    Living in the present, which I would never again. These things would have felt a bit like to me few years back. I wouldn't have blamed or been mocking anyone else, but for me it would have been like, yeah, we're living in it, we all live in the presence, or whatever. Now I really get it. I really get it Like, and that's the, that is the most special thing you're going to have time with the people around you, your friends, your family, whatever family you have. Just value that time.

    Angela Walker

    Host

    50:44

    You look like you found this new kind of joy in your life, Chris.

    Chris Slegg

    Host

    50:49

    And I've always had a really happy life. I've always loved my job, my family, my friends. But I do feel a new level of that now. It's kind of again stuff I wouldn't have, like mindfulness. I guess to a degree it's my version of that and I still don't quite get what that is. But definitely taking just appreciation in the moment and the days that you have and what is around you and the health that you still have to, there's so much that I am still able to do and for two years of kind of fearing what I wouldn't be able to do anymore, now it's valuing what there's so so much that I am still able to do. So yeah, it is a real shift of a mindset and I don't quite know how it happened, but it was just being able to talk to someone who is professionally there to listen to you and who you can say anything without worrying that you're going to ruin their day.

    51:41

    I didn't want to share everything with my wife and my mom because they don't really have an answer. No one has an answer, but I feel like I was going to have an impact on them. So I admit I'm really lucky to have me in this support. Not everyone's going to be able to find that, but to just be able to talk about my fears, my insecurities, to say anything and know that it's okay to say it and share it with her made a big, big difference.

    Angela Walker

    Host

    52:10

    And what does the future hold now, chris? I mean, you said that your heart's stable, but it hadn't improved. What do you have to do? Is it kind of a watch and waiting kind of scenario?

    Chris Slegg

    Host

    52:23

    Yeah it has been for most of my life. I guess it's like it's just monitoring it. Now my heart's in heart failure. I might not have this right. I don't want to, but my understanding of what I've been told is, once your heart's in heart failure, you can't reverse heart failure.

    52:36

    Heart failure can go on for a very long time. It can go very quickly to the point where you would need to transplant and it can also go in fits and starts, so it can progress and then slow and progress and no one can really tell me much more than that, other than the Glen has stopped it getting worse over this last year and again dealing with uncertainty. So I've always struggled with but I feel a lot more equipped to do that, having spoken to me. Now I will, year by year, I'll have to go back and one day they might say you're going to need a transplant and that's a reality that I just have to deal with. They may not.

    53:14

    I may be really lucky and I can live the rest of my natural life and not have to resort to that, but it is still a reality I have to have to face. I'm really happy that I had the Glen. I definitely feel better than a year ago and I feel better prepared, much, much better prepared for having been able to talk about it and got mental health support, much, much better equipped to deal with any bad news I might have to deal with again. So yeah, overridingly I'm in a positive place and I feel like mine is a positive story, and that's another reason I wanted to share it.

    Angela Walker

    Host

    53:50

    Thank you for sharing it and me, chris. He does sound mentally in a much better place than I know he was when he had that devastating news and you know, as he said, he found it totally overwhelming. Would you like to see more psychologists like you available to help people like Chris who've had hard to bear news?

    Mina Arvanitopoulou

    Host

    54:14

    Absolutely, they're not enough of us and they're all. All the services are so busy. We acknowledge the impact and they're just not enough of us. We have long waiting list and it can take us up to six months now to see patients, and we are aware that you know patients need to see us. When they're actually going through it, it could be just before surgery or just after surgery, like in Chris's case. So, you know, in order for us to be able to be there for patients when they need us, we need more of a absolutely.

    Angela Walker

    Host

    54:47

    And we know, don't we, that being able to go into surgery with a positive outlook can be beneficial towards the outcome. It's, can't it?

    Mina Arvanitopoulou

    Host

    54:56

    Absolutely During after, in terms of how we look after ourselves, how we engage, how we cooperate, how we adhere to all these lifestyle changes that perhaps we need to make, how to seek support, how to manage situations and work, all of that I mean, I think psychology should be and I think in a lot of cases it's very valid and I can see that but I think it needs to sort of spread, spread even more.

    Angela Walker

    Host

    55:29

    Is there any way that somebody who's had some life changing news they might have found out they've got a condition or an illness or they need a procedure or something like that? If somebody's in that situation and they're feeling overwhelmed, where can they go for help?

    Mina Arvanitopoulou

    Host

    55:46

    Well, we would assume that they will be under cardiology, under a hospital. So first we would recommend to ask in their teams if there is psychology. If there isn't, they can always try the British Heart Foundation and see if there are any local resources, any group supports in their area. If that and for that, if for some reason there isn't where they live, then it's important to know that each borough has a mental sort of health team for mild and moderate difficulties, which are called talking therapy or IAPT they go by both names mainly talking therapy now. So that's definitely something to consider. They may get they won't be getting perhaps the specialist support that they might need at that point, but it could definitely be helpful to make them understand, make sense of what's happening first and to feel a bit better equipped to deal with this uncertainty and what they're experiencing. Really.

    Angela Walker

    Host

    56:46

    Thank you so much, and thank you, chris, so much for sharing your story, and I hope that you go on and that your health improves further. So thank you for telling us all about what you've been going through. Thanks, Angie.

    Chris Slegg

    Host

    56:58

    No, it's been a real privilege. I'm grateful for the opportunity to talk about Ebstein's and the mental health challenge of heart surgery. To keep up the great work with your podcast, because that's really helped me to listen to your podcast and the inspirational stories other people have been sharing on it. I certainly feel that people, a lot of people, take heart and inspiration and a bit of strength from hearing what others have been able to cope with, and I think your series is invaluable for that. So thank you for the podcast.

    Angela Walker

    Host

    57:29

    Thank you so much for saying that, thanks Chris, thanks Mina.

    Mina Arvanitopoulou

    Host

    57:32

    And thank you Angie as well. It's been an amazing opportunity and thank you, Chris, and you know how I found our work together so rewarding, so thank you so much.

    Chris Slegg

    Host

    57:42

    Thank you, You're absolutely yeah, I can't tell you how valuable you've been to my whole life outlook, so I'm so grateful I got the chance to to come under your care and, yeah, I'll be forever grateful.

    Mina Arvanitopoulou

    Host

    57:55

    Thank you. Thank you, this might be a first actually for patients and therapists to be alive together and they're publicly talking.

    Angela Walker

    Host

    58:02

    I don't know, it's lovely to hear you, chris, that you've got so much support from Mina, and Mina's obviously gets a lot of enjoyment from helping you as well. It's wonderful. Yeah, absolutely, thank you both so much. Thank you. I'm journalist Angela Walker, and today I've been in conversation with BBC Sports reporter Chris Slegg and clinical psychologist Mina Arvranita Pulu. I do hope you've enjoyed the show. Please take a moment to rate and review, because that means that the algorithms mean the podcast will get shown to more people, and you can get in touch with me through my website, angelawalkerreportscom. Until next time, goodbye.

  • Angela Walker: 0:07

    Microplastics are killing our rivers. That's the view of my guest today, who's found the highest concentration of microplastics ever recorded in the bed of the River Tame in Greater Manchester. I'm journalist, Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. Today I'm in conversation with Professor Jamie Woodward from the Geography Department of the University of Manchester. Thank you very much for joining me today.

    Professor Jamie Woodward: 0:37

    Thanks for inviting me, Angela. Nice to see you.

    Angela Walker: 0:40

    So we're hearing a lot about sewage and water pollution at the moment, but today we're going to be talking about microplastics. What exactly are they?

    Professor Jamie Woodward: 0:49

    Well, microplastics. The technical definition is they're pieces of plastic particle that are smaller than five millimetres. So that's half a centimetre, which is actually quite big, but most of the microplastics that we see in the rivers around Manchester are actually much smaller than that. They're smaller than half a millimetre.

    Angela Walker: 1:07

    So what damage do they cause and how are they getting into our rivers then?

    Speaker 3: 1:12

    Well, we started looking at microplastics about six or seven years ago, just a curiosity driven piece of environmental research to see what the levels of microplastic contamination were in the riverbeds around Manchester. We didn't know that and in fact there's been very little work on microplastics in rivers globally, but particularly in the UK. We were surprised to find very high levels of microplastic contamination on riverbeds at certain locations on ten rivers around Greater Manchester. So we started thinking then about how these microplastics were getting into the river channels. But in terms of their ecological impact, there's a steady increase of papers now that have shown that microplastics can have negative consequences on fish populations. Most of that research has been done in the laboratories, showing that microplastics can get stuck in the gastrointinal tract. For example, they can damage the intestinal walls. Microplastics can also have impacts on fish in terms of presenting them from feeding, encouraging malnutrition, etc. So there's a variety of sort of physical impacts. But also microplastics also can get stuck in the gut and start to break down, and plastics are a whole set of polymers and a whole range of chemicals involved and they can have toxic consequences as well. So there's a variety of reasons why it's not good that our rivers are contaminated with microplastics. There's also, of course, a lot of evidence to show that microplastics are moving through the food chain and microplastics are being detected in humans. So there's a variety of reasons why we want to make sure our rivers have good ecological status and they're not contaminated with microplastics.

    Angela Walker: 2:47

    And by their very nature they're so tiny and microscopic normally, aren't they? How do you go about measuring them, the density and the size of them?

    Speaker 3: 2:57

    Well, we've developed a method at Manchester whereby we sample the microplastics that are actually stored on the channel beds, and the reason we do that is because many creatures live on the channel bed. It's a really important part of the riverine ecosystem. So many creatures feed on the channel bed, whether it's birds or fish or invertebrates. They reproduce or they live on the riverbed. So if the riverbed is contaminated with microplastics, there's a much greater chance of those microplastics getting into the food chain. Greenpeace did a national survey a few years ago, mainly focused on microplastics in water, and in many rivers they didn't find hardly any microplastics. We've looked at water as well and found low concentration of microplastics, but at the same sites found very heavy levels of contamination, actually on the channel bed. So we think in ecological terms, looking at microplastics on the riverbed is perhaps the most important place to focus on.

    Angela Walker: 3:45

    So is it your thought that you know the microplastics are in the water. They sink down to the bed, they settle there. Is that what's happening?

    Speaker 3: 3:53

    Well, that's an interesting point because our first phase of research I had a PhD student called Rachel Hurley, who's now based in Oslo working on plastic projects across Europe, and a colleague of mine, James Rothwell. We first started looking at microplastics in 2015 and we found microplastics on 40 sites around Manchester. And then in the winter of 1516, we got extensive flooding. There were big storms in the northwest. Storm either came across the northwest of England and particularly the rivers to the north of Manchester saw very heavy flooding indeed. So we thought, well, we'll go back out in the new year, in spring, and resample all those 40 sites to see those microplastics have been washed away. So, and we found that at most of the sites that microplastics have been reduced significantly. So the rivers will wash the microplastics away. So that got us thinking then okay, well, how are these microplastics getting into the river in the first place? We know that microplastics are high concentrations of microplastics in wastewater, but wastewater is only supposed to be discharged into rivers when rivers are in flood or rivers are in high flow what we call exceptional conditions. So the very presence of microplastics on the riverbeds suggested that they were being introduced in wastewater when the rivers were actually at low flow. So that started thinking about, got us thinking about whether there was a relationship here between wastewater practice and the occurrence of microplastics on river channel beds.

    Angela Walker: 5:13

    And how exactly are the microplastics getting into the wastewater? Is it fibres from our clothes? That kind of thing.

    Speaker 3: 5:19

    Yeah, the microplastics come from a whole range of sources. So you mentioned domestic wastewater, domestic laundries, commercial laundries. That all produces millions of microplastics which will get into wastewater and get into the sewerage system. Microplastics can also be washed off roads, from tire particles, for example, and brake dust, and also there's industrial sources of microplastics, a range of microplastic fragments of microbeads that find their way into the drainage system. But of course, all these microplastics from this whole variety of sources ultimately should make their way to a wastewater treatment plant. And there's a big literature now from across the world which has shown that if wastewater treatment is done properly and done effectively, it can remove a significant proportion of those microplastics and under optimal conditions it can actually move up to 99% of the microplastics. So the very fact that wastewater treatment is effective at removing microplastics tells us that once we see microplastics in high concentrations on riverbeds, that suggests that wastewater treatment that isn't happening as it should.

    Angela Walker: 6:22

    So, in layman's terms, what you're saying is that water companies are releasing waste water into our rivers when they shouldn't be and that, as a result, is contaminating the rivers and riverbeds with microplastics.

    Speaker 3: 6:36

    Indeed. So we're currently embroiled in a sewage scandal, in England and Wales primarily, and it's well established now that discharges of untreated wastewater Sewage is getting most of the attention, for obvious reasons. But sewage is basically a part of untreated wastewater and that untreated wastewater includes a whole cocktail of pollutants, heavy metals, but also microplastics. So treating wastewater obviously to reduce sewage pollution, to stop rivers becoming over enriched with nutrients, to stop people getting ill We've also found that that's also a key part of tackling the microplastic problem is keeping the microplastics out of rivers. Now we mentioned a whole range of microplastic sources. The obvious solution to this is to stop producing plastics and to stop putting plastics into the sewage system. But that isn't going to happen anytime soon and the water companies have a statutory responsibility to deal with whatever's in the sewage system. So the best strategy we have at the moment is to treat that wastewater, because we know that full treatment of the wastewater is actually very effective at removing the microplastics.

    Angela Walker: 7:43

    Now I know you mentioned to me earlier that around about the same time that you did your study and realised that a lot of wastewater was being discharged at certain times and polluting the rivers, there was another study which had similar results but used totally different methods. Talk us through those two studies and how they differed and what they were showing.

    Speaker 3: 8:06

    Yeah, Professor Peter Hammond, who's part of the Windrush Against Sewage Pollution Group. He's a mathematician and he'd been doing forensic analysis of the water company's own data, basically the flow data that goes for the wastewater coming in and treated or untreated wastewater leaving wastewater treatment plants. He was doing forensic analysis of those data and he looked at a number of wastewater treatment plants and looked at data over a number of years and showed very, very clearly that many wastewater treatment plants was basically spilling illegally. They were releasing untreated wastewater, they were often spilling early and this was a problem in terms of creating sewage pollution in rivers. His first paper was published in March 2021 and just a few weeks later we published our paper on microplastics in a journal called Nature Sustainability, which basically made this link between microplastic pollution and the release of untreated wastewater. So that was quite exciting. So Peter got in touch with me, sent me an email, we had a Zoom call, we had a conversation and we basically come to exactly the same conclusion, but from completely different approaches. One was the forensic analysis of flow data and we were using a proxy for wastewater, which was basically the presence of microplastic at high concentrations on riverbeds, and both of those sets of evidence pointed to water companies releasing untreated wastewater into rivers at low flow. So yeah, it was a meeting of minds and it was very satisfying actually that there's a completely independent verification of what we were arguing.

    Angela Walker: 9:34

    And so what happened when you presented your evidence to the water companies?

    Speaker 3: 9:40

    Well, n terms of presenting our evidence, our strategy has been to publish our evidence in the best journals that we can so that those data is out there for people to scrutinise, and so far, we've published a couple of papers in Nature Journals and it's well known in the community that they have a very, very high standard of peer review and editorial scrutiny. So we wanted to publish the papers in the best places we can so that then the community whether it's the industry or the science community can look at those papers and evaluate them. When our paper was published in 2021, United Utilities released a statement. Of course, the water companies didn't like another big problem being parked at their front door, so United Utilities released a statement criticising our sampling strategy, criticising our conclusions, but that's a common strategy of big corporate organisations. But what's interesting is, two and a half years later, after that paper was published, United Utilities haven't come up with a better explanation of the data sets that we presented. So we stand by those findings.

    Angela Walker: 10:42

    I did invite United Utilities to join us on this podcast but they said they didn't have anybody available. But they have sent this statement so I'll share that with you today. And it says "Professor Woodward's research did not consider all sources of microplastics in the immediate study area, such as the presence of plastics recycling plants. It goes on to say it's important society increases its understanding of microplastic pollution, so meaningful solutions can be developed to tackle the issue. That's why we're supporting independent scientific research in North Manchester to better understand the sources of microplastic pollution, including from wastewater assets and other river catchment sources. And so they're saying that you weren't considering other sources of microplastics. What would you say in response to that?

    Speaker 3: 11:29

    Yeah, that statement was released the day that our paper was published. That was in May 2021. So, yeah, there are multiple sources of microplastics in the capturement. But if microplastics are coming from what the United States has haven't explained, if microplastics are coming from recycling plants, how do those microplastics get into the river? They're probably going to get into the drainage system and come to their sewerage system and end up in the river. So ultimately, they should be treated at wastewater treatment plants and, in terms of criticising our sampling strategy, we stand by that. And they're still promising this research that they're doing in North Manchester. They were talking about that two and a half years ago. We still haven't seen any of those data. I'd be fascinated to see what data they have on microplastics.

    Angela Walker: 12:12

    It's really interesting that you say that that's an old statement, because that's the one that they've provided me with this morning, this very day. So they're still using the same wording, are they?

    Speaker 3: 12:22

    Well, it's nice to know that they're doing some recycling, but we'd like to get some fresh information.

    Angela Walker: 12:27

    That's interesting. Yeah, so they said it was too short notice for them to find a guest to come on, unfortunately. So while we've been talking, I've just had a statement drop from DEFRA which I've been waiting for and I'll read it out for you now. It says "the UK is a global leader in combating plastic waste. We've taken major steps to tackle plastic pollution, including microplastics. Just last week, we launched a UK-wide consultation on banning wet wipes containing plastic, which will help reduce the amount of microplastics entering wastewater treatment plants. More widely, we've restricted the supply of several single-use plastic items such as straws, drink stirrers and cotton buds, and introduced a world-leading plastic packaging tax that's stopping microplastics at source. What do you make of that statement?

    Speaker 3: 13:20

    Yeah, there's nothing in there about treating wastewater and making sure the water companies do what they're obliged to do to follow the permits that they're issued with for their wastewater treatment sites. Treating wastewater is the most important strategy to reduce microplastics entering rivers. Yeah, I welcome the consultation on wet wipes. I don't know how many consultations we've had on wet wipes, but if this finally happens wet wipes are obliged in many urban rivers I would ban wet wipes tomorrow. Absolutely. The government has made some important steps plastic bags, etc. But in terms of microplastics, what I want to hear is we have to come up with a way to make the water companies treat the wastewater, not create their infrastructure so that it happens. That's the most important things in terms of keeping microplastics out of rivers.

    Angela Walker: 14:07

    Regulation. You're calling for that. Why do you think that we're not seeing a tightening up of regulation?

    Speaker 3: 14:12

    Well, it's regulation, but also a sustained investment package. That should have happened decades ago, because the money has been in the system to do that. Now the water companies are recently announced saying they can reduce spills by 140,000 per year. So what was this intractable, insolvable Victorian problem a few years ago is now suddenly solvable. So if that investment had happened 10, 15 years ago, we wouldn't be in the mess that we're in now.

    Angela Walker: 14:39

    So, when you talk about these samples that you take, how do you do this? Do you literally get into the river and you're waders with a big bucket, and how does it work?

    Speaker 3: 14:49

    We absolutely get into the river with our waders. We have a sampling cylinder, could you imagine? About the same size of an aluminium bin. So it's a cylinder, a metal cylinder. We push it into the riverbed so that we can isolate a portion of the riverbed, and then we use a metal trowel to disturb the gravels, disturb the sands in the riverbed, so the fine sediments and microplastics come up into suspension. And then we collect samples of that muddy water and take it back to the laboratory in large containers and then in the laboratory we extract the sediments and extract the microplastics. We do various density separations and then we physically identify the microplastics under a microscope and we count them. We identify every single one and we count them. So we have a very rigorous procedure to sample the microplastics from the riverbed, take them back to the laboratory and then we count them.

    Angela Walker: 15:37

    And I know that you were shocked, weren't you, with the measurements that you came up with in the River Tame in Greater Manchester. Walk me through the levels of contamination that you found and how they compared with other studies globally which were looking at the same kind of pollution.

    Speaker 3: 15:56

    Yeah, United Utilities have pointed this out. The first paper we published in 2018 got a lot of press attention. Of course, journalists, Angela, love superlatives. They like the highest, the biggest, so at that time, that was the highest concentration of microplastic that had ever been found, and then we published another site in 2021 that had even higher concentrations. I think we had 138,000 microplastic particles per kilogram of fine bed sediment on the riverbed. Now I'm less interested in the fact that that's the highest concentration that anybody's ever found, but I'm interested in the significance of that. However, the first paper that we published, United Utilities just said that they're not sure how much work's been done elsewhere. That paper's now been cited by other scientists over 630 times, so there's quite a big body now of work on microplastics in rivers that's taking place across the world. Now there may well be a site that's more contaminated than that. I don't know of it, but I'm happy to be corrected on that. The main point is, though, is not whether it's the highest. The main point is that the rivers around Greater Manchester and then the rivers in urban environments across the UK have high levels of microplastic contamination, very often because wastewater isn't being treated as it should.

    Angela Walker: 17:07

    And what's going to happen if this continues?

    Speaker 3: 17:10

    Well, you asked me earlier about what was happening in terms of when we were disseminating this information. There are a number of positive things happening. I gave evidence to the Environmental Audit Committee in the Commons, who were doing a major inquiry into river pollution across England, and Philip Dunn shared that committee. So I gave written evidence and I gave a presentation to that committee. So they've made a series of recommendations. They published a very substantial report with a large number of recommendations in January 2022. One of those recommendations was that we should have a national survey of rivers across England to look at levels of microplastic contamination, because we haven't been collecting baseline data. The Environment Agency, up to this point, is overstretched, underfunded and they haven't been collecting data on microplastics. But they're currently developing a national strategy to do that and we're helping them when we're providing advice with the way we collect our samples etc. So we're contributing to the development of that national strategy. So that's a positive thing. So we'll be able to get much better information about you know to what levels of contamination we have in river systems across England and beyond. So that's a positive. And also there's a lot of pressure now on the water companies to clean up their act. This has been a public relations disaster for them. You may have noticed that in early this year, in May, the water companies actually apologized. They apologized for the frequency of sewage spills and untreated wastewater spills that have been happening across England and Wales primarily, and they're trying to clean up their act. So their investment is going ahead. So these are all positive things. However, there's still room for much more transparency across the industry. I would argue that currently, we get data on how often they dump sewage or they spill sewage and how long those sewage spills last. So we get data on hours, the duration of the spills and how often they last. The water companies should be able to provide us with much more information on the volumes of those discharges, because we get data on a spill. We don't know whether a spill, for example, is 10 litres or 10 billion litres, so the water companies are still able to hide very, very substantial discharges of untreated wastewater and sewage into our rivers within the existing metrics, and I think those metrics are flawed. There's scope to make them much more informative.

    Angela Walker: 19:23

    So what do you want to see? Do you want to see more regulation to try and force water companies to be more thorough in their reporting of sewage discharges? What do you want to see happen?

    Speaker 3: 19:36

    Well, regulation clearly needs tightening up because the water companies have effectively I would argue, have effectively been operating in a regulation-free environment for the last five years possibly the last decade and many of them have ruthlessly exploited that. So the Environment Agency has many dedicated professionals who want to do the right thing, who care passionately about the environment and many of my former students work for the Environment Agency but they've been severely underfunded. Their monitoring budget was effectively slashed in half a few years ago and also they've suffered from poor leadership. They've set the wrong priorities and they've completely dropped the ball on river water quality and river habitats. In England in the last few years Ofwat's big debate about you know what has Ofwat been doing. The water companies have apologized for not investing sufficiently, so that's been happening on off-Wats watch. So certainly the Environment Agency and Ofwat need to get their acts together. The Environment Agency needs more funding. The water companies aren't going to be taken back into public ownership. There's a big debate about that in the moment. People are arguing for that, but I don't think that's going to happen. The solution at this stage is to better fund the Environment Agency and to make sure regulation and monitoring is happening effectively across the country.

    Angela Walker: 20:45

    Yeah, we have seen some finding of water companies by the EA, you know for dumping sewage. But really the amount of money that the companies have been fined has been such a drop in the ocean compared with the amount of actual illegal discharges that some people are saying it's almost just like paying a small token to get away with it.

    Speaker 3: 21:10

    There was a good example a couple of years ago with Southern Water I think they were fined 90 million. That stands out as an exceptional event and that was a result of particularly tenacious Environment Agency officers y ou know holding them to account and getting the information. But elsewhere, you know that there aren't any deterrents. You know water companies are systematically dumping sewage in rivers. They've done it for many, many years and it will continue for many years into the future. So there isn't a sufficient deterrent at the moment to stop them from doing that. The government's there's been a lot of talk about this but nothing has really happened that's taken away that deterrent. Any other industry, Angela, where the CEOs are in charge of an industry that's dumping huge amounts of toxic waste in the environment, those CEOs would go to prison. But the water companies seem to have a you know, a free ticket to do what they're like.

    Angela Walker: 22:00

    There is legal action at the moment, isn't there, for I think it's seven water companies who are accused of under-reporting the amount of sewage that they've discharged. So there is that that's ongoing. From your point of view, what is your latest research? What are you working on at the moment regarding microplastics?

    Speaker 3: 22:23

    Well, yeah, I have a student at the moment. We're now starting to look at microplastics in fish, so that work isn't published yet. We'll be able to say a bit more about that when that work is done. But we're starting looking at the river tame and the obvious thing there to do is to start looking at if those microplastics are getting into the biology. So I don't want to say too much about that right now, but let's just say that there is a microplastic contamination problem with the fish in the river tame. So that's something that we'll be writing on publishing very soon. I've also been looking at the presence of microbeads in the rivers across Greater Manchester. That's some other work that we'll be writing up very soon. The presence of microbeads is important the United Utilities have been arguing about. You know there are other sources of microplastic pollution, but microbeads are primary microplastic particles. You know they're deliberately manufactured. They're spherical particles. They're used for a variety of purposes. So they haven't come from a wastewater treatment. They haven't come from a recycling plant. They haven't come from the degradation of plastics in the river. They're a clear connection with the wastewater treatment system. So when we find microbeads in high concentrations, it's a very, very clear demonstration that wastewater treatment isn't happening as it should. So we've got a lot more data now on the presence of microbeads across the region and we've got very clear relationships with wastewater data. So that's the next stuff that we'll be writing up.

    Angela Walker: 23:41

    That's interesting, because I thought microbeads were banned, or certainly they were banned in face products and things like that, weren't they?

    Speaker 3: 23:48

    Yeah, well, Michael Gove banned personal care products, microbeads and personal care, which that ban came in, I think, in January 2018. The microbeads that we see come from industrial processes, so they're not microbeads in personal care products. So, yeah, they're getting into the sewerage system. They're getting into the drainage network. We're seeing them on the riverbeds in high concentrations, so there's a separate debate there about you know, should there be tighter regulation around the industrial use of those microbeads? But at the moment, we are seeing them and they provide a very clear link between the wastewater system and the contamination on the riverbeds, and we often find them. It's part of other microplastic assemblies as well, so they're part of a tool that we're developing to identify poor wastewater practice.

    Angela Walker: 24:33

    And how does it make you feel you know, when you're doing your research and you're looking at the results and you're seeing all these micro-pastic building up in the riverbeds, what goes through your mind?

    Speaker 3: 24:44

    Well, you know, we started off this work six or seven years ago and it was just a sort of curiosity-driven piece of river catchment science and then suddenly we made the connection between wastewater and microplastic contamination. So it got policy legs and a lot of exposure. So it's been a journey and it's evolved. Me speaking to different audiences, do I get depressed about this? You know it is pretty dispiriting to see many of the rivers around Greater Manchester treated pretty much like open sewers. However, I am an optimist, Angela, and what's interesting about this whole sewage debate and the whole river pollution debate is that the sewage scandal hasn't been revealed by off-what. It hasn't been uncovered by the environment agency. It's been revealed by campaigners and university researchers, the work that Peter Hammond has done, the work that we've done in Manchester, the brilliant campaigning groups at Ilkley on the Wharf and at Wasp down in the Cotswolds, and so that tells me that campaigning works and it is possible to make a difference through university research and through people campaigning because they care passionately about their local rivers. And also I don't think it's a coincidence that, if you meant, much of the serious investment now that the water companies are putting in are in those areas where people are campaigning most heavily and shining a light on poor wastewater practice. So the message there is get out and campaign and, you know, make a noise about your local river, get hold of the data, complain to the water company and be a vehicle for change.

    Angela Walker: 26:10

    If water companies do clean up their act and they do treat the water before they release it into the waterways and so on, and we do stop microplastics from getting through at that stage, what about the microplastics that are already there? What can be done about it?

    Speaker 3: 26:27

    Well, yeah, things about. Once microplastics are out in the environment, they're pretty much out there and ultimately they will end up in the ocean, on the ocean floor. But yeah, there are. People have talked about various strategies, about sort of you know, cleaning up microplastics in the environment. You know, I haven't seen any methods that are going to be cost effective to do that. The best strategy we have is to keep microplastics out of rivers in the first place. The first phase of our work showed that rivers are a key supplier of microplastics to the oceans. So if you work backwards, one of the key ways of tackling the microplastic problem in the oceans is to keep microplastics out of rivers. The best way we have to keep microplastics out of rivers until we stop using plastic is basically to treat the wastewater, and that is a big part of the problem. So you pay your water bills, angela. You know half of your water bill is for wastewater, to have your wastewater treated. So there's an expectation that that money that you spend will result in the wastewater being treated. And sadly, what's been happening over the last over too long, the last couple of decades is that wastewater infrastructure has been degraded, it hasn't been upgraded, it hasn't been invested in and too much wastewater untreated wastewater has been dumped in rivers because it's been too easy to do that and it's been a way of maintaining profits.

    Angela Walker: 27:43

    On an individual basis. Do you think we can make a difference if we say, right, I'm not going to buy clothes with plastic in that kind of thing?

    Speaker 3: 27:51

    Yeah, getting the right information out to people is important. I mean, one strategy at the moment is to there's a campaign to fit washing machines with filters. For example, alberto Costa, the MP for East Leicester, has got a private member spill in Parliament to have filters fitted to washing machines to trap microplastic fibres at source. So that's just one example of something that can be done, and the solution, of course, is to reduce plastic use and to stop plastic pollution at source. We shouldn't have to rely on the water companies to treat this wastewater. That's kind of an end-of-pipe solution, but the reality is we are where we are and lots of microplastics in the sewer system. The best strategy at the moment is to treat that wastewater, but of course we all have a responsibility to reduce the amount of plastics that we use, whether it's in a domestic situation or an industrial situation. Absolutely.

    Angela Walker: 28:37

    And you mentioned earlier about taking part in some kind of national monitoring scheme. What's the time scale for that and what's the geographical scale? How many kind of riverbeds will you be kind of looking at?

    Speaker 3: 28:50

    Well, that's still being fleshed out at the moment. The environment agency are working on that. They'll get some funding from DEFRA, we hope. I think the plan at the moment is to take a couple of river catchments and to study those in detail to understand the sources of microplastics and also to understand what interventions can make a difference in terms of reducing microplastic contamination, so that the lessons that's learned will be learned from that exercise can be rolled out then across the country to have a sort of nationwide monitoring programme to help us better understand the bigger picture.

    Angela Walker: 29:19

    But there is hope.

    Speaker 3: 29:21

    Absolutely. I'm an optimist and I get huge encouragement and satisfaction from the campaign that goes about, and I see lots of people around Greater Manchester in my local region where people care passionately about their river systems. They're investing in those river systems but they've been badly let down by the system. So, yeah, change is long overdue and we need to move faster.

    Angela Walker: 29:45

    Thank you so much for joining us today and thank you for explaining all about microplastics. It's so fascinating to hear how they're just coming through the sewage network and landing in our riverbeds and then making a journey from there to the sea. I think a lot of people wouldn't realise that that's how it's happening.

    Speaker 3: 30:04

    Thanks, angela, delighted to share our research with you.

    Angela Walker: 30:07

    Today I've been in conversation with Professor Jamie Woodward from the Geography Department of the University of Manchester. I hope you've enjoyed the show. Please rate, review and share the show, as that means algorithms will mean it's made available to more people. This is the last in the current series of Angela Walker in conversation. I'm taking a break for a few weeks, but I will be back soon. Meanwhile, you can get in touch through my website, angiowalkerreportscom. Until next time, take care.

  • Angela Walker: 0:07

    Families who believe miscarriages and devastating birth defects were caused by the pregnancy test primadose say it's a fantastic positive that the government has told this programme it's committed to reviewing all new evidence regarding oral hormone pregnancy tests and adverse effects in pregnancy. I'm journalist, angela Walker, and in this programme I talk to inspirational people and discuss under reported issues. Today I'm in conversation with Marie Lyons. She's from the Association for Children Damaged by Oral Hormone Pregnancy Tests. Marie, thank you for talking to us today. Thank you for sharing your story as well about your daughter, sarah. But before we chat about Sarah and what happened to you, let's just look back at the timeline of events, because this is something that started some 50 years ago. It was in 1958 that primadose was prescribed as a new pregnancy test. What can you tell us about it? How did it work?

    Marie Lyon: 1:09

    The way it worked was it introduced a period if you were not pregnant. That was the premise anyway, and if you were pregnant, obviously within 48 hours if you hadn't bled, you could take it for granted that you were actually pregnant. The problem was that it was composed of synthetic hormones that were 40 times the strength of an oral concept, which, of course, we didn't know that at the time. But it was also supposed to be used for amenorrhea. Amenorrhea is an absence of periods. Now, as GPs will tell you, usually an absence of a period means that you're pregnant. So many women possibly would have taken that, assuming that it was a misperiod, and that would have induced a miscarriage or a bleed, and this, of course, as I say, something that we didn't know at the time. But in 1958, even as early as 1958, we had the first warning, and that was from a GP called Dr Edwards, and his warning to the committee of safety of medicine and safety of drugs was that this is a type of insult to the foetus that could actually cause congenital abnormalities in the not well-established pregnancy. And, of course, when you're taking that, when you literally just missed a period, it is not a well-established pregnancy and sadly, his warnings were just not listened to.

    Angela Walker: 2:39

    And so when we're talking about abnormalities, what kind of problems are we talking about? Marie, A lot of limb problems.

    Marie Lyon: 2:47

    So it was either shortened limbs, missing limbs, toes and fingers that were fused, very, very often. Severe brain damage, heart problems where the heart just didn't develop, transposition of the vessel so that you know that they're all on the wrong side. Really, really dreadful injuries. That the something was that it wasn't a pattern. With Thalidomide there was always a pattern of the limbs and with our families it was a lot of internal damage as well. It was only later on that we found out that Thalidomide victims also had similar injuries to us that were not visible. But it was easy to kind of quantify what happened with phyllidomide because it was such a pattern of injuries.

    Angela Walker: 3:38

    And so you had a baby. You had a little girl called Sarah. What year was that, and what happened when you had Sarah?

    Marie Lyon: 3:46

    Sarah was born in 1970. Now you've got to bear in mind that we'd had many, many warnings before then about the danger of these hormone pregnancy tests and in 1967, there was a definitive study produced by Dr Isobel Gal which gave a severe warning that these drugs were causing the damage. However, they were still on the market in 1969 when I took the tablets and Sarah was born. Sorry, in 1970, when I took the tablets and Sarah was born in the October of that year, her left arm had not formed below the elbow but there was a tiny little pad at the end of her elbow and that had five tiny digits. So obviously the hand and the arm were there initially but just didn't develop. She had to have those amputated when she was 13 months old, which again was another trial. She was only a little baby and that was quite a severe operation. But when I look now at some of the other damages that occurred with other families, we were quite lucky.

    Angela Walker: 4:52

    What was it like when you had your baby and there she was and she is perfect, as she was beautiful, yes, but she had a problem. She did. Her arm hadn't developed properly. How did you feel, Marie?

    Marie Lyon: 5:07

    It was very difficult at first, because you always feel more when your child is hurt than you do when you're hurt. My problem was that I mean she was beautiful and very feisty. Certainly didn't let it hold her back at all. Even in hospital, when she had the amputation of the fingers, she was up in the cot and taking the bandage off for about an hour. But it was difficult because once she started school in those days it wasn't actually something that was as common to see a child with an artificial arm and it was a horrible heavy that had to go with straps across her shoulder and children were frightened of her because if she turned quite quickly of course the arm could just knock into one of them. She did suffer quite severely when she first went to school and it was only thanks to the wonderful teachers that actually said to the children Sarah's just different, you're different with your hair colour, with your height, with your whatever, and she's just different. Then the second wave came, when she became a teenager. That then is when you're into relationships and going out and getting joy. She was beautiful, really, five foot eight, absolutely gorgeous, but nevertheless not everybody would accept that she had an artificial arm.

    Angela Walker: 6:28

    So you took these tablets in 1970, and the warnings within the medical community were being given out long before 1970.

    Marie Lyon: 6:39

    Of course. Well, I said the first one was in 1958. From 1964, we had another one for another doctor that said and this is actually from the GP research group and they found that 8.2 percent of 60 pregnancies had found congenital malformations, and that was after taking an oral HBT. Another again medical professional actually wrote to say this actually looks like it could be another salad of mine. So these are all 64, 65, they were just relentless and they were always telling the health authority, the current regulator, and the regulator just dismissed it and eventually Dr Gal produced her and it was an extensive review of the pregnancies and she was actually a doctor at Carshalton Hospital, so she was dealing with pregnant women all the time and she was the first one to actually see that there was a link because of so many of her patients who were either miscarrying or having babies with congenital abnormalities, and that made her actually research it really thoroughly. She presented this as well to the Commission, the Committee on Safety of Medicines, which they absolutely ignored and ultimately had to say we have no defence in the 8-year delay in taking these tablets off the market.

    Angela Walker: 8:06

    Yeah, because it was not till 1975, there was a warning from government health regulators. In 1977 there was a second warning and it was 1978, eight years after you had Sarah that it was taken off the market. It was.

    Marie Lyon: 8:22

    I think that the frustrating part is the 1975 warning, which was an official warning to GPs, said that we have found a link between taking these tablets and other effects. The 1977 notification went out said quite definitely the link has been confirmed. So I don't quite understand why it's still today is denied that there's any kind of association between taking these tablets and the dreadful adverse effects our members have suffered with. It just does not. It defies logic really. That's all I can tell you, even in that day and age, that so many specific warnings have been sent to the UK regulator, who would actually dismiss them, would not actually take any action, did his own research and actually did a full study and that study confirmed that there was a five to one chance of abnormalities if you took home the oral hormone pregnancy test. Instead of warning the GPs about this, he actually contacted the drug company and said I'm giving you a heads up before this actually gets to any kind of legal action, that this is what I found, but don't worry about it because I've destroyed all the evidence.

    Angela Walker: 9:41

    Shocking to hear. Shocking to hear. Well, in 2017, an expert working group commissioned by the government said it found no association. But then, three years later, 2020, baroness Cumberledge chaired an independent review and it did find an association and adverse effect. And that's just three years ago.

    Marie Lyon: 10:01

    It is, and I think the problem is it's like Mark and your own homework, because that expert working group secretary after that was the MHRA, and the MHRA, of course, are the successors of the original regulator and they definitely interfered with that expert working group results. We have freedom of information documents, that which prove that. They all today from the original report that I received, the draft report, to, one month later, to the full published report, and that was definitely interfered with by the MHRA. And this is another problem I think that we have in the UK that we don't have a regulator that actually works for the patients. They still work with the drug companies. So we know that that report was absolutely flawed, deliberately flawed, as said by one of the professional people who are actually looking at this. His name is Professor Carl Hennigan and he says that it was deliberately flawed. That is a link. He found the link when he did his report about 18 months later.

    Angela Walker: 11:12

    So we don't have the MHRA here to defend no, sadly, we don't to defend that. So I would say that they would probably dispute that that was interfered with. But we do have a statement here from the Department for Health and I'm going to read this out. It's very interesting because it says here "patient safety is of the utmost importance, which is why we published our response to the cumbersome review in July 2021, where we accepted the majority of recommendations and 50 actions for improvement. The scientific evidence this statement from the Department of Health says does not support a causal association between hormone pregnancy tests and birth defects. We are committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy. Now, this is a new development, isn't it? Because they're committing to reviewing that. But when you got your day in the High Court, it didn't pan out for you how you wanted it to, no, it didn't, because they vehemently defended the situation.

    Marie Lyon: 12:22

    They absolutely supported 100% the expert working group report and they use that throughout the whole of that four days to say this is why we dispute your findings, because this was a full expert working group that worked for almost two years looking at the evidence. They would not acknowledge that Theresa May actually stood up and said that it did not add up because she'd read it cover to cover. They would not acknowledge that more than one prominent scientist had said that the figures did not add up. It had a full meta-analysis done by Professor Carl Hennigan, but they have stopped that rigidly throughout. So for them to say now that they are committed to reviewing new evidence just doesn't add up for their behaviour either. They were very, very aggressive in court and definitely said there is no case to answer. And the other thing that's really quite telling is they quite insist that it has to be a causal association. They are very well aware, even lately, for aware, to get a causal association you have to give that tablet to a pregnant woman. That's the only way that you can see cause and effect. But I know that there are scientists out there that are working on the probable effect, which is as near to cause as you will ever get, and they're getting good results, so I hope that they actually stand by that statement.

    Angela Walker: 13:50

    So this was May 2023. This was just a few months ago and after this court case, I know you were determined not to let this be an end to the matter, but then you had communication from the government and drug company. Tell us about that, because this communication was really trying to silence you, wasn't it? And to stop you from taking further legal action, regardless of any new evidence that you might find. So just talk me through that.

    Marie Lyon: 14:19

    It was intimidating. Our members were absolutely petrified because the implication was and it was quite a confirmed implication that if we continued with the legal action, that we would be liable and they would ask for costs of the previous hearing in 1982 and the current hearing today. Those costs if we had to pay the full amount would have been in excess of £11 million. As you can imagine, our families were absolutely petrified and I think that was compounded by the fact that they had email after email sent to them to say you need to sign this and if you do not sign this, we will be coming up due for costs. And I think the final upset for our members that really did cause enormous stress. They received a bind of this big full of documents and all of them basically the same kind of message this is the evidence that we have, this is the work that we've had to put in and this is what we'll be charging you for. So ultimately we had no choice, we could not. And even Justice yet in her summing up, said you will now be relieved to know that you will not lose your houses. And this was the fear. We're all in our seventies, you know, some in early eighties and the only access that we have is our home. We don't have any other assets. You know, most of us are pensioners. So that was a threat that we just could not ignore and we had to agree, and our barrister quite rightly said his job was to protect us. So his advice was we need to accept this unfortunate, I'll say. It's a request from the defendants.

    Angela Walker: 16:15

    And in June of that year, manchester Mayor Andy Burnham accused the government of using its might to bully and silence disabled campaigners. In the courts They've been accused of bullying. Your own barrister is telling you don't take this any further. Yes, where did you? What did you decide to do?

    Marie Lyon: 16:35

    I had to look at what would help our families. The one thing I had for weeks beforehand was phone calls and emails saying please, please, tell me, I'm not going to lose my home. Please tell me, particularly ones that run in their own businesses, please tell me that they can't take our business. And relentlessly, really, I stayed with. They keep going, just keep going, because you know this surely cannot be, you know, our own government going to sue us for damages after already damaging us with allowing those tablets on the market. It couldn't happen. And I genuinely, genuinely thought that that threat was just that. It was a threat and it would never be carried through. And it was only, as I say, when we got the deluge of emails, letters and then this huge file, our barrister said look, this is serious and we have to now take the view that we cannot risk those costs being awarded. And, just as she upset herself, she would have had great difficulty in not awarding some kind of cost to the defendants. So ultimately, we did not have a choice and we had to comply with the defendants wishes, and that was that we will never, ever, be allowed to bring another action against any of the four defendants for damages, stating that these have been caused by the Oral Hormone Parenthood Test. It was a bit of a blow, it really was, and how do you feel about it now? Well, I actually feel quite fired up because you know what we're down, but we're not out. We've still got options that we can look at, and that's what I've said to our members. Look on the positive we now have no costs against us by any of the defendants. The previous solicitors have no costs that they can claim. If we had on it. We're starting now the level playing field. We know that we have right on our side. We know that justice hasn't been served, but that doesn't mean to say that it won't be served. We still have the option to look at new evidence that will be coming out. Justice Schipholz, who alluded to the fact that this does not include government bodies, you know. So that does mean that we still have possibly some kind of redress from our government. I'm not sure where that will go and I certainly would not accept anything except full accountability from the government that they were negligent and we joined this drug from the market. So we are going to regroup. My priority at the moment, quite honestly, is to look after our families because they still have. They still can't believe that the free of these costs that you cannot. I cannot emphasise the fear that they felt, knowing that there were risks of such a huge amount of money, and I just feel they need now to settle. And this is what I've said to them. It's not bad news. Yes, it's a bump in the road. We've had them before. We can regroup, we can look at new evidence. That comes in, particularly now, angela, with having that, you know, definitive statement from the government. They are committed to looking at new evidence. As soon as they look at the new evidence I know he's out there and I will continue searching for that evidence there will be duty bound, morally bound, to actually review their current stance.

    Angela Walker: 19:54

    Yeah, this is great, isn't it? Because this is just this statement that we've received this week. Yes, I'm going to read that bit out again because it's so important. We are committed. This is it, says a DHSE spokesman says we are committed to reviewing all new evidence on hormone pregnancy tests and adverse effects in pregnancy. We've got it here. It's in black and white. Let's see them reviewing this new evidence because it's out there, you say, isn't it? Now? Let's just read this out, because we do need to give Bayer's side and this is what they say their reactive media statement. I did invite them to come on the podcast. I invited the Department of Health. They both declined, but this is their statement and they've said the High Court judgment of 26 May 2023 dismissed the legal case in the UK. The judge considered all circumstances and noted the litigation is an attempt to relitigate issues that were considered in earlier litigation, which failed because a causal association could not be established between HPTS and fetal harms. Having considered material before me, I conclude the position has not materially changed in the claimant's favour. As such, the proceedings were struck out and the court determined in bringing the claim they'd been an abuse of process. It goes on to say they've got sympathy for the claimants, given the challenges in life they've had to deal with. But Bayer's maintained over the course of more than 40 years there's no causal relationship between the use of primados and increased incidence of congenital anomalies, in which case it based the question why was it removed? Why was it removed from the market? But there we go. This is what we've got from Bayer. So that's their statement there. How are you feeling, marie? You've been fighting this fight. I mean, how old is your daughter now? She's like 50. 53. She's 53. At what point did you start this organisation? To fight for justice, to fight to have this link established and to receive a compensation for it and acknowledgement of the harm.

    Marie Lyon: 22:09

    The acknowledgement of the harm is the most important thing. We need to know that we were not to blame. We started in 1978 and at that time, with 800 families who wrote in to say that they'd been damaged, we were forced to withdraw in 1982 after the court case was stayed, and the reason for that was that, bearing shearing, as they are now, had 31 experts and we had eight. So we were outmaneuvered in relation to finance, which has happened again this year. We didn't have the financial backing, we didn't have the legal backing either. We just had a barrister that's working pro bono and a barrister that has actually been lent to us by advocate, which is fantastic charity, but nevertheless they both committed. So my feeling is that had we had Hillsville or Dr If you've heard of Hillsville the public authority accountability bill, we would have had parity when it comes to legal representation and the funding. We would also have had duty of Canada, which again in the original legal action, 82, that would have actually close our case by a really resounding success, because there would have been duty bound to release all the information they had, which they actually destroyed. So 1978, we then had to give up as a saying 1982. And again it was the same kind of thing if we carry on. We had to sell our houses to finance it because lead delayed withdrew. When we restarted again in 2009, it was with the original evidence that we had, but quite luckily, we went to queue archives and found so many documents that proved that they were well aware of the damage and that they'd actually destroyed our hidden documents so that we were not aware. I was then lucky enough to be contacted by the German campaign group and invited to go over to Germany because I'd asked them that they got something similar to queue archives, and they said well, we do, but you know we're not really looked into it. So I went over there. We went into the archives at Lanzar archive in Berlin and the 7000 pages of documents from both the drug company and our regulators showing that the you know the cross emails that had gone literally communications about the issue. Amazing communications and again, you know they're in black and white to say, well, yes, we knew it was used as an abortion patient, so what? And that was kind of the callous attitude. And that callous attitude continues today. They know that we are these little people, they're these huge organizations and the real thoughts are they can't touch us and, sadly, unless we have something like those for a while, they're perfectly right.

    Angela Walker: 25:16

    I admire you, I really do for powering on, because it's exhausting and I see that this campaign just taking over your life really hasn't it? Absolutely.

    Marie Lyon: 25:25

    Yes, it has to, because you can't have a five day a week and you can't have a nine to five, because you're dealing with different countries, different time frames. You know, evidence comes in that just needs immediate review. I can't say, well, I'll start with come Monday and yes, it does. But at the same time, it's for a purpose that means so much to so many people, and it's not just our families. I think this is what is kind of hidden at the moment. This is for women in the future. This is to look at the safety of those synthetic hormones that are still in oral hormone, in the pill, the oral conceptive. And I'm not saying don't use it. I'm just saying that there are ways that that can be made safer and research really is what's needed today. That's one of my prime asks please do more research. We know, because I've just had a study sent in from Sweden and that study says that you can actually reduce the components of the pill by 80%, which will avoid strokes, cancer, high blood pressure and all the other known effects of the pill. And they are known, they're acknowledged. So what I'm not saying is don't take it, you know, don't worry about it, but be careful. Make sure that you've got informed consent, that you know the risks. But my plea is to scientists out there please start to look at these, these synthetic hormones. Let's look at the future. Let's look at young women now, today, who have the freedom of the pill, but let's make sure that it's also safe and that they're protected.

    Angela Walker: 27:03

    Because of course, we go to the doctor and the doctor gives us the medication and we blindly take it. I mean slightly less so nowadays because it's quite easy to hop online and go right. I'm just going to quickly Google this drug that I've been taking and just see if there are any. You know side effects. You couldn't do that in the 60s and 70s, you know, because we trusted trusted implicitly.

    Marie Lyon: 27:28

    And I think the sad thing is why do we need to do this? Why is that the drug regulator, the MHRO? Why are they not doing this? This is their job, but it isn't, you know. We think it's their job to actually protect patients, but their job is actually to work with the drug companies and they're paid by the drug companies. So this tells me immediately that there's an inequality there. But you know, who are they protecting and they're definitely protecting the drug company. So this is a concern I've had since I started back in 2009. I didn't even consider this in the early days, but it's only now we're finding more and more out about the damage that's done by this synthetic hormones. There's still use as an abortion, you know, in third world countries, and that was the use for them, but that use was never disclosed. So you've got to consider if you've got something that's an abortion, how on earth can that be a pregnancy test? And with another, oh wow, incredible. Professor Neil Vargesson, a Scottish academic, and he's worked on Thalidomide for over 25 years and he became very interested in this and he said from day one wow, this is not a drug you should give to a pregnant woman. Now I know that he's doing some more kind of research. I'm not sure whether it's at the moment, but again, I know that people are now actually starting to look at the environment is affecting the waterways. So we've got fish. They're actually changing sex. I've written to King Charles and told him about that because it's a big issue of the environment. You know these, these drugs are flushed into the waterways or the contraceptives are throughout the whole world. You know billions and billions of people and nobody's actually looking at the damage. Sorry for the rant.

    Angela Walker: 29:18

    You're very entitled to rant as far as I'm concerned. Now, how's your daughter now? Tell me about Sarah now, because you were saying earlier you're not just worried about the more obvious complications and disabilities that people have got missing limbs and deformities like that. There are other unseen complications that you're worried about. So tell me about those problems.

    Marie Lyon: 29:43

    Well, we've lost three members in the last 18 months to heart attacks. They were all either late 40s or early 50s and two of those were undiagnosed. So this is one of the fears I have. I know that she also has periods where she's not very well, but nobody can actually pinpoint what it is. So she gets extreme tiredness. She also did have a period of about five years of severe panic attacks and again all this, you know, when she speaks to therapists they say this is actually something that's been ongoing since she was a child and obviously the trauma in childhood, with school, with teenagers etc. Will come back at some time. But I do know with some of our other members, with one of them now that's actually in a wheelchair because her internal injuries have really started to take hold and she's going to need a massive operation on her bladder and bowel. So this is where the fear is for me and for the other mums. You know we've managed, thank God, to keep our children relatively healthy for now, but what is there in the future? But you know, the other thing as well which is so heartbreaking are the number of families whose child didn't survive and they look at every anniversary, every better. That should have been every Christmas, every Easter, whether they would have been married, whether they've had grandchildren, that never, ever goes away. That's the forgotten child, if you like, from other people. So it's all those effects that are so difficult.

    Angela Walker: 31:16

    And how many people? I mean it's so hard to quantify, isn't it? Because you know, if somebody did take this tablet and it did induce a miscarriage, then it's. You know. I mean it's 50 years ago, at the time that that event came and went. It might not even have been registered anywhere. So it's very difficult, isn't it, to put a number on it.

    Marie Lyon: 31:37

    It is difficult, and I think this is where I feel frustrated that there were women out there that feel that they did something wrong and they didn't. And it was the sheer cynicism of the drug company that in 1978, a thousand packets a month were sent to Northern Ireland allegedly from an area. Now you're not telling me that that was from an area, because at the time abortion was illegal in Ireland and my feeling is that that was a cynical move by the drug company. We'll stand this over for this purpose, but if it's happened to be used for something else, so what? Now again, a lot of those women may probably did genuinely go to their GP for a pregnancy test and they may have been given these drugs absolutely unknowingly, as we were. And again, once they found out about the other effect, they may actually be thinking oh my God, I did this to my child and people think I did it deliberately. And it's those kind of add-on effects for women throughout the world. I mean, they're giving these to young girls now to stop their pregnancies because abortion is frowned on in these third world countries and it's that use that I vehemently oppose and I really want that to stop.

    Angela Walker: 33:00

    Yeah, it kind of beggars believe that we've got a product here which is used for abortion and at the same time it's being distributed as a pregnancy test for people who want to have a baby.

    Marie Lyon: 33:12

    Those components during the current day abortion pill? Do you know that they're actually in the pill today? So what does that tell you? And why can the drug community not really just say, ok, right hands off? One of the reasons we had a wonderful debate in Parliament with some fantastic MPs Theresa May was one of them and so Mike Penning actually stood up and said you know, this was a drug that came from our health authorities this was from the government health service, if you like and yet they're denying culpability when they're responsible for it being on the market. So and David stood up and said I know the reason that the drug company worked out responsibility, because over 80 countries were actually using this drug. That's how many countries that they flooded with it and what his thoughts are that if the drug company had to admit liability here, they'd have another 79 countries coming after them.

    Angela Walker: 34:15

    I don't know if that's true, but it does sound to reason that if in a court of law in this country it was ruled that it was responsible, then that would roll out across the country and the financial implications would be astronomical. So I can understand that, but how do you feel? I mean, there was an acknowledgement, wasn't there? When Matt Hancock, you know he apologised, did he not? What did he?

    Marie Lyon: 34:44

    say about it. He rescinded that because when I actually got back in touch with him, the comment was "oh gosh, no, we were just apologising because we didn't listen to you. We're not admitting any kind of responsibility, not even moral responsibility, but keeping it on the market. So that apology, I knew it was worth it. As soon as the words came out of his mouth. There was no sincerity there, no real empathy, so I dismissed that immediately. It wasn't a great shock to me when it was then changed to another way of looking at it and for me, as I said, the person who really took charge of this after the expert working group report was Theresa May, and that was some Mike Penning again, who actually said to her have you actually read it? She said, well, no, but obviously I've got special advisers who've read it. And he said just read it. And she did. And she said, as soon as she read it she just thought, whoa, no, no, no, this doesn't add up. But you know that she's included us in her book as well, which I'm so delighted with. And again, that's just an acknowledgement that even you know that, far removed, if you like, that she is now from being Prime Minister, she still has this certainty that she did the right thing in actually agreeing to the IMM-DES review. She's the one that set it up and that was simply because of Primadoss and the fact that the expert working group report was flawed.

    Angela Walker: 36:09

    And how do you feel about all your dealings with government?

    Marie Lyon: 36:14

    Well, I think we've got to separate government from the political parties. We have MPs from every single political party. I am delighted, and this isn't a political issue. The only thing that I will say is I am bitterly disappointed that the only party whose leader does not support us is the Labour Party and Kate Stalman. We have tried and tried to get an interview with him, and it was the same with Jeremy Corbyn, and managed to get a half an hour with him. He promised and promised he would support, because I had a letter that I'd signed from every single member sorry, leader of every political party. One of them even sent his signature from Paris, where he was actually there at the time, and he refused to sign and I couldn't send that letter to the government. So, although it's not political, some of the Labour MPs are magnificent. Angela Rayner, you know for one, has been a real stalwart. We've got Yasmin Qureshi , who actually leads the FPG with 132 MPs, but government itself is separate from that and they've got another agenda. So I know that they have the Treasury, you know, they have the civil servants and, in the back of the government, all these people working to contain this, and I just want somebody in either the Conservative or the Labour government I don't really care which just to take ownership and to say once and for all we got it wrong. This isn't about money. I've said that from day one. We're not asking for millions of pounds. We need our families to be safe. We need the children who are still being cared for by the parents and they are 53 years of age and some are still in continent. They're in wheelchairs. They can't speak. We're in 70s looking after these children without any help whatsoever. We've one of our members in Scotland, dear God. She is now confined to a wheelchair. She had to have a leg amputated, Her arm is only to here and then she just got her hand. She pays for her own care. It's wrong. Where do you take this from here, Marie? I take it as far as I can go because I'm not giving up. I've said this from day one. I know that justice is out there. It shouldn't depend on how much money we have and it shouldn't depend on the government really outmaneuvering, if you like, with the finances. I mean, you know there were two cases, two barristers, solicitors. There was a total of about 25 people on that side of the room defendants. We had two barristers and me on this side of the room and that was it. So there was a huge inequality and this is why, as the sale was over a long, that will stop. They will not be able to beat people into submission in the future. So it's really important. It's also important to look at our regulator. You know there's something wrong in this country where we cannot trust that the drugs that we are taking have been safely tested, and MP Esther McVeigh she at the moment is really trying very hard to have a full inquiry into the MHRA, which is what we've been asking for for a long time. So what I'm asking for is this I want a full review of the MHRA. I want to support Hillsborough Law for people in the future. It's too late for us, but people in the future will benefit. I want there to be some kind of independent funding for an independent review of these synthetic hormones so that women in the future will be protected. I also want women to be aware they can question their GP. They can actually ask to make sure that they've got all the risks and benefits before they take any kind of medication at all. And this is the same to be absolutely honest for the medical devices, because you've got Kath Samson who manages the Mesh campaign, who's worked her heart out, just the same as we have to try and get some kind of justice and to stop women actually stopping in the future. So we're not alone. There are other people who are in the same position and I don't think we're anything special, but I do think that we can make a difference if people would just listen and act.

    Angela Walker: 40:34

    So we've got this in writing here that the government's committed to reviewing all new evidence. Is there any new evidence going to be forthcoming? Are you going to be able to revisit this?

    Marie Lyon: 40:46

    Yes, yes, it's the short answer. I do know that there is evidence that's actually culminated at the moment, hopefully in some kind of written paper, maybe towards the end of the year, which again is to show me. It wasn't there for the four-day hearing, but we have COVID for two years and that did stop a lot of the work in the labs with the students. So we do know that there is evidence coming. We're not sure which direction is coming from at the moment and when, but this is why I was so absolutely thrilled when you actually received that statement from the government. That was like gold for me and that was again. It's just a little beacon of light where we can say you know, we're not finished yet and we're not finished at all. This is an injustice. It's got to be realised with some kind of acknowledgement. That's all we want. Please acknowledge that we didn't do anything wrong, but that you failed in your duty of care and that the drug company basically put profits before safety. And again with our regulator, they conspired with the drug companies in 1967 and in 2003. And I'm disgusted, utterly disgusted.

    Angela Walker: 42:04

    Marie, thank you so much for talking to us. You're so passionate and full of drive. You're a formidable opponent. If I was in trouble, I'd want you on my side. You're in trouble, you come to me. Thank you for coming on and sharing your story, and I want to stay updated with your campaign and everything that you're doing. Thank you so much. Thank you, it's a pleasure. I'm journalist Angela Walker, and today I've been in conversation with Marie Lyon. I hope you've enjoyed the programme. Please leave a review, as that means more people will get shown this podcast due to the algorithms, and check out the website AngelaWalkerReportscom, where you see information about other podcasts that I've recorded, and you can also sign up for the newsletter, where you'll get information about all the latest news and developments on the stories I've been covering. Until next time, take care.

  • Angela Walker: 0:06

    It's a rare connective tissue disorder with a range of symptoms from joint hypermobility through to gut problems and organ prolapse. It was thought to affect one in 5,000 people, but the latest research suggests it could affect one in 500. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. Today I'm in conversation with Sarah Hamilton from the Ellers-Danlos Support UK. Thanks for joining me, sarah. First of all, what is Ellers-Danlos Syndrome so?

    Sarah Hamilton, Ehlers Danlos Support UK: 0:41

    Ehlers-Danlos Syndrome are a connective tissue disorder. There's 14 different types, 13 we can genetically test for. They're the most common type, the hypermobile type. We can't and it's basically a fault with the collagen within the body. And our collagen is the mortar between the bricks, kind of building blocks, so when there's an issue with it those bricks are unstable and it can affect organs. Collagen is in everything within our body the eyes, the organs, the skin, the joints so we have this instability and instability throughout the whole of the body.

    Angela Walker: 1:17

    So there are so many symptoms. I know hernias, prolapses, heart problems. How bad can the symptoms get?

    Sarah Hamilton, Ehlers Danlos Support UK: 1:30

    The biggest issue is lack of management, which will then lead to symptoms becoming worse and worse and worse until it gets to a point where we do have people in the community that need to use wheelchairs. If it's affecting the gut, then they need to have peg feeds and things, and that comes from not knowing what it is, that they have not having appropriate management and medical support to get on top of that. So it works in a bit of a spectrum, but we do see this kind of line of affecting people in very different ways, but much more towards a severe end of things is ending up in wheelchairs and affecting daily life very heavily.

    Angela Walker: 2:08

    One of the reasons that I wanted to talk to you is because I've got joint hypermobility syndrome myself. I didn't find out till I was in my 30s and it really started causing me problems after I had my daughter and I had really bad sciatica and I had prolapses and I had hernias and what happened was all of these various ailments that I had were looked on as different conditions and it took a long time before anybody said, oh, you've got joint hypermobility syndrome, it's a collagen issue, and nobody was really looking at it as a whole. And so I was looking in some support groups and that seemed to be a common complaint. Other people like me who had joint problems and various other ailments were saying you know, I'm being sent to the physio, I'm being sent to a physio to look at my joints, I'm being I'm being sent to somebody else for my migraines, and they weren't really looking at all of the complaints as one whole condition. Is that something that you come across?

    Sarah Hamilton, Ehlers Danlos Support UK: 3:14

    Yes, absolutely, and I think as well with the way that our medical system works. So you go to the GP with an ailment, you've got 10 minutes and you're allowed to speak about. One thing For the problem with EDS, like you mentioned, is that actually it's affecting lots of different things. So you end up going down all these different routes and you struggle to get someone that sits down and looks at all these puzzle pieces and puts them together to see the big picture. And it means that patients kind of go round and round in circles and, as you mentioned, often don't get diagnosed with anything until they're in their 30s and 40s, for instance, when it reaches a point where you kind of go, there's clearly something going on here. This is clearly all connected and quite often it's the patient of cells that put everything together and go. This is what I think is going on. This is what I think I have, but it is unfortunately very, very common. I think average diagnostic time is 11 years. It's definitely a lot higher for most people. We know we've had people kind of 60, 70s, 80s that have then gone on to be diagnosed, but from childhood they've seen all these issues. It's just never been put together.

    Angela Walker: 4:20

    It's so interesting. It wasn't until I was signed off work with really bad sciatica and then I saw a private physio who said, oh, your pelvis is really out of alignment. And it had been out of alignment for a few years by then, since I'd given birth and I'd had, you know so, a numb leg and I couldn't drive and I was in a lot of pain. And, yeah, I saw a private physio. So, oh, yeah, well, you've got joint hypermobility. And I was like what? So I hadn't even been given that diagnosis before. But when I was given that diagnosis, it meant that I could make some lifestyle changes, like pilates I found really helpful and stuff like that. And now I'm under the care of a rheumatologist. But what can we do then? Do you think to see people getting an earlier diagnosis and help sooner?

    Sarah Hamilton, Ehlers Danlos Support UK: 5:12

    I think the biggest thing is awareness and education. At the minute you go to the GP and quite often the GP will say, oh, I've not come across that or I think it's super rare. I don't think it's that. And it's changing that narrative. It's having the GP acknowledge and recognize oh, I know what that is, I know about hypermobility spectrum disorder, I know about hypermobility, EDs and the rare types too. But then also knowing what to do from there so a GP can diagnose the hypermobile type. So that would be the best scenario is that all GPs have an awareness and training in it. That patient comes in, they go yeah, I know exactly what that is but also from there, that they have the tools to know what to do with those patients. Because diagnosis is all very well but, like you said, there needs to be management of it. Do we? Depending on the level of severity, do they need to have a referral to gastro, making sure that physios are all aware of it as well as they give appropriate management, encouraging patients to self manage as well with things like pilates, which are accidents, swimming, walking, etc. So just giving those tools to the GPs and primary care physicians would be incredibly valuable and I think we make a huge difference, not just to diagnosis, but to quality of life for patients as well.

    Angela Walker: 6:28

    And you mentioned earlier that there's like 14 different types. It is so confusing when you've got a condition and you're trying to go right, how can I help myself? I'll do some research. You know, I'm a journalist, I'm used to doing research. And then you go oh my gosh, well, which one have I got? Have I got this? Have I got that? And you said that it's been like reclassified and they're renaming things and rejigging it . So what exactly are the experts you know saying now about the different types of Ehlers-Danlos?

    Sarah Hamilton, Ehlers Danlos Support UK: 6:58

    So I imagine it will go up. Even since 2017 classifications we've had more types. The idea, hopefully, is that they can locate the gene for the hypermobile type, because that makes diagnosis a lot easier. But from the research that they're doing, it seems much more complex. The hypermobile type. I imagine, as time goes on, that it will go up and up and up. I mean with the genetic clinics. Currently, if you go through the genetics clinic, they not only test for those 13 types that they can test, they run a panel for all connective tissue disorders. So they're very aware that there is major crossovers and, as you said as well, when you're looking at these things online, they all kind of crossover and it can be really intimidating and difficult to work out Okay, which type do I have? Because I'm ticking this box and that box and there's not much clarification and, especially with the rare types, there's not much known. I mean, we have some types where it's family specific. They have their own type of EDS. So the knowledge that we have of that type is very, very minimal. And it's very difficult as well, because there are some types where you kind of say, where does it even differ between these two types? How would you distinguish and as a charity. That's where we're really helpful kind of coming in, because our knowledge is slightly more in-depth and we have a picture of those patients as well in terms of we can physically describe the differences, which I think can be very helpful, because when you're reading it on a page it can be very vague, it can be very open-ended. It's really difficult to know as we can kind of pull out those questions to really help people go. Well, actually it's worth going down a genetic route to look at this. Something there, or actually know, sounds a bit more hypermobile EDS, but chat to your doctor and bring up these points. So it can be very difficult. I imagine, as time goes on, the list will just get longer with the more research that we do.

    Angela Walker: 8:51

    And I know that, as a charity, you've been petitioning the government to put more research, more money to make some changes into the way that hypermobility syndromes are looked at and looked after. Tell us about this campaign.

    Sarah Hamilton, Ehlers Danlos Support UK: 9:07

    Yes, absolutely. So, our campaign has been pushing government to invest in primary care and secondary care, for awareness and education in hypermobility as an HSD and really pushing them to put something in place for these patients. Currently there is absolutely nothing. I work on the helpline day in, day out. I get people that call me and I have to explain to them that there's not much I can do to suggest where they need to go or what to do, because nothing exists. There was one clinic at UCLH and they closed it during COVID and Dr Hanadi Kaz Kaz was working really hard to try and get that clinic back open. But it kind of pushed with that campaign of us saying you know, enough is enough that all these patients don't have appropriate care, they don't have appropriate pathway and the government needs to put those resources into changing that education to those primary sources will make the biggest difference to the patients and enable them to get care. And currently at the minute, if you're not getting diagnosis, if you're not getting management, you're ending up in A&E, you're ending up having to have emergency treatment, you're ending up having to be in a much worse position, which, if you really want to look at cost of things, which is what often it always comes down to, that is a 10 times more expensive supplying that level of care than if, from the get-go, you had a GP diagnosis and you had physio put in management and you had a referral to, say, gastro. That's a lot cheaper than having to wait years and years and years until you get to a point where you need all this severe emergency treatment. So petitioning the government to say actually this is going to benefit not only the patients but in terms of the way that the system works as well. It's going to benefit everyone and make a difference.

    Angela Walker: 10:56

    How much support have you got for your petition?

    Sarah Hamilton, Ehlers Danlos Support UK: 10:59

    So currently for England we have 23,000 signatures and then for the Devolve Nation, scotland, northern Ireland and Wales. Their levels of house and office are much lower, so we've got a couple of thousand in each place and especially for Scotland, wales and Northern Ireland there is nothing. Northern Ireland have one pediatric rheumatologist for the whole of the country, wales I don't think they have any, and Scotland a similar situation. So across the country it's very, very dire and especially in the smaller nations there's absolutely nothing for patients to access. There's not specialists.

    Angela Walker: 11:42

    Let me just read out the government response, because they have responded to your petition and this is what they've said "there are no plans for a national service for diagnosis or treatment of HEDS and HSD. Our plans for musculoskeletal conditions will be outlined in the major conditions strategy. And then it talks about how Ellis Danlos comprises a group of inheritor conditions affecting connective tissue and it says there is no specific treatment for either condition but it is possible to manage many of the symptoms with support and advice, and that they want clinicians such as GPs and expert physios to be empowered to identify and diagnose HEDS and HSD. What do you think about the government reaction?

    Sarah Hamilton, Ehlers Danlos Support UK: 12:30

    Inadequate, I think, is the best way to describe it and disappointing as well. It kind of demonstrates that they've not grasped the condition itself and the effect that it has. And, yes, it would be fantastic to empower GPs and expert physios to be able to put these things in place. But it's a multi-systemic condition. It needs a multidisciplinary team and although MSK would be good for a small section of it, what about all the other symptoms that we're looking at? What about bowel and bladder issues? What about prolapse? What about healing? It's such a bigger pitch than that and it was trying to communicate to them that it's not just an MSK situation. It's a condition that is unusual in the terms that it covers a lot of things, but their response just shows again a lack of understanding of the condition and how it affects people. For a lot of people, the joint side of things ends up being the lesser issue. When they're unable to eat, when they're unable to go to the toilet, those become the things that take over their life and, again, that they're not getting help and support and management for. So, yes, the response wasn't great and it's kind of pushed us to push harder, to say Again we disagree and things need to change.

    Angela Walker: 13:47

    Because it does encompass so many different symptoms and I think that's one of the confusing things, isn't it? I mean, personally, I get migraines, dry eyes, prolapses, hernias, very crunchy, painful joints, and you know, and I'm affected very mildly compared to some people who get daily dislocations, digestive problems, bowel problems. Maybe we need to classify them, maybe they need to be classified more specifically in terms of the conditions, do you think? Why is there such an overlap? I know it's to do with the collagen, but it seems to encompass so many different symptoms.

    Sarah Hamilton, Ehlers Danlos Support UK: 14:31

    Yeah, absolutely, and it is a really difficult one in terms of kind of everywhere it affects, and I think the biggest issue is because it's a collagen problem and that collagen's and everything. There's kind of not part of the body that goes untouched by it. And I suppose it's very unusual in that, you know, most conditions that we see will affect a certain thing. So, for instance, if you've got arthritis, it's specific to joints and causes pain. If you have um chrysanthemum colitis, it can be specific to the, the bowel. Here we're looking at a condition that's extremely complex in that it just seems to affect everything. And why does it do that and how does it do that and why is it different? Even within the same family? We can look at them, I say a mother and a daughter, and their symptoms are completely different. So we understand that it makes it extremely complex in trying to work out what it is that's going on and the hope is, with time and especially with things like being able to find a genetic test for that type, it just makes it easier to kind of pinpoint what specifically is going on with that condition, what is causing it, where does the issue come from, and are there even kind of subgroups to that as well. Like you said, it kind of where's our spectrum? It's? We've got different levels of severity. Is it that there are more severe types of the high mobility type, or is it just the way it affects people? And I do think it is an unusual condition in that sense of it just seems to affect everything.

    Angela Walker: 15:55

    So meantime, while the government's dragging its feet, or while the government's saying no, it doesn't have any plans to improve the situation. What does that mean for sufferers?

    Sarah Hamilton, Ehlers Danlos Support UK: 16:07

    It means there's nothing currently, whilst those feet have been dragged, it means that everyone else has come to a halt and that there's nothing in place for them. We've been working, trying to do awareness and training with specialists. So next Wednesday, for instance, we've got a medical professional training session with Dr Jane Simmons where she's teaching about EDS two medical professionals but what you're relying on there is them seeking out that training, whereas if you get the government involved to make it mandatory, to make it compulsory, you're going to reach huge portions of people that need that care and attention. It needs to change. I mean, currently you can go to local physio, for instance, and they just don't understand about how the exercises may need to be different, how they may need to be more gentle because they're not like everyone else. It could be that you, you're telling them to do an exercise with their shoulder and it's dislocating it. It has to be specific and there has to be education into how the condition affects people and at the minute, most people end up self managing or trying to put self management in place because there's just nothing else and we we can give as many resources as possible. We can refer to those clinicians who are willing to help, who are pushing as well to get help in place but, again from their point of view, they're often one person in a huge area. Their their at capacity and struggling to help as many patients as possible and not knowing what to do or where to send them either and you talked about self management.

    Angela Walker: 17:44

    What can people who've got a hypermobility disorder do to help themselves?

    Sarah Hamilton, Ehlers Danlos Support UK: 17:51

    Things such as pilates gentle pilates can be really helpful. We've got great resources on our website where we've had free pilates sessions that can be done from in bed if you're wheelchair bound, if you need to take it really slowly, and gentle walking as well. And what's really important is pacing. So it may be that you could walk half a mile, but at the end of that half a mile you're in considerable pain. So the idea with pacing is that you scale that back. So actually I'm just going to walk for a minute. At the end of that minute I'm not going to have pain and I'm going to build that up very, very slowly. So eventually do two minutes, then three minutes, and the idea is that eventually you'll be able to do half a mile, but you won't end it in pain and you build it up incredibly gently. There is this kind of misconception because it says all exercise is really helpful and that's sometimes taken as oh, get down the gym and get on a treadmill and we're actually making. That's not the best thing for you. That's going to be really hard on your joints. It's going to cause a lot of problems. It needs to be super gentle, it needs to be very kind to your joints. Hydrotherapy is really good. I mean, that's just the joint side of things in terms of people who are doing self-management for gastro. They can check their doctor about deficiencies, about intolerances is a certain thing setting off your gut and kind of investigating what it is and where the problems lie. So sometimes kind of taking that, you know, taking charge of it and saying to the doctor okay, I'm having these gut issues. I've looked at these papers. I think maybe these things might help coming just either, and can you support me in doing them? Self-advocacy is the biggest thing. Being able to speak up for yourself and to go in and say actually I'm struggling and I need help is One of the biggest things. A self-management is to kind of say to the doctor you have to help, you have to step in here and Give me tools as well, because there's only so much you can do as a patient at home. Well, you need to say to them Hello, can you support me in?

    Angela Walker: 19:48

    this Self-advocacy so important, isn't it? Because there was a point where I went to the GP and I was like, look, I've got sciatica, I've got two hernias. This isn't normal in a woman of my age. Something is going on. I need to. I need to get this properly investigated. So, but it can be really hard to self-advocate and also, you talked about pacing is really hard for people to go. I'm having a really good day, but I'm gonna rain it in, because if someone's having a really good day, then they want to get all the stuff done.

    Sarah Hamilton, Ehlers Danlos Support UK: 20:22

    Absolutely. It's, yes, pacing on paper Brilliant. Doing it in real life is really difficult. I mean, do say to people as well give yourself some leniency if it means that you know it's a Friday night and you really want to go see your friends. You haven't seen them in ages. You know that you're gonna be wiped out for weekend. You know it's gonna take it out of you, but you know what actually feel mental health. It's worth doing. You know life does get in the way. We can't be perfect. You know, as someone who tells everything the ideal, perfect thing of how you should manage it. As having heads myself, I know I'm guilty of not Not doing those things and like good day and you rush around and you fly around the house and it is difficult to be strict with yourself. We do say to people please be kind to yourself as well. You are only human. Life gets in the way. We are busy people. When you're trying to keep on top of things Work, family, social life, all these things come into account and if you are having a good day, you kind of have this flurry of I need to get everything done and you know, although not ideal, it's okay.

    Angela Walker: 21:26

    We understand that that happens. It's about saying do you know what? I've got my kids sports day tomorrow and I want to be really well for that. So today I'm gonna take it easy getting that balance, isn't it? Let's talk about work, because you know it's one of these hidden illnesses, isn't it really? People can't tell if you've got Sciatica, if you've got really painful joints, if you're feeling exhausted. So what can people do to manage their condition in the workplace? Reasonable?

    Sarah Hamilton, Ehlers Danlos Support UK: 21:54

    adjustments and access to work, the kind of top things that we suggest. And, as you said, it's a really difficult one. It's an invisible condition. You often it very well and you look perfectly fine. So kind of explaining to people that that's not the case can be difficult. Encouraging work to do an OT assessment so that they can have a look at what they can put in place. But simple things such as you know, if you have your chair change, you have a sitting standing desk, if you're able to work from home, you know, in all these things staying in work most people want to stay in work, don't want to be in a position where they're not, and they're able to do that if the right things are put in place. If they're working, hours can be changed. For instance, you know, if they struggled to get up in the morning, can we start later in the day and work a little bit later and to have those conversations, work today. It's not an unwillingness to work. That's what you want to work. But I do need support and having these things in place. Government schemes such as access to work fantastic as well, and they just put in place what you need. You need a wrist rest, do you need a Program so that you're not typing if your fingers are dislocating, and do you need an ergonomic chair? Do you need a heat pad? There's so many things that they can put in place to make your life a lot better From a workplace point of view as well. You know, quite often the government's able to fund that as well. So, especially depending on the size of the company, it's not even them funding that equipment. As government funded, there's no reason not to put it in place, especially when it makes a really good to know, isn't it?

    Angela Walker: 23:20

    because I think sometimes people they don't want to Tell their employer because it almost feels like it's a sign of weakness and they feel that if they, if they've got, you know, a smaller employer, they don't want to put them to the expense or whatever. So it's good to know that there's that government funding there. And just finally, I know that you said you're not leaving it there when it comes to campaigning the government for more funding and more helpful people with elis danlos, where are you taking this campaign next? What's like the next step?

    Sarah Hamilton, Ehlers Danlos Support UK: 23:52

    The next step is hopefully to have a discussion, have a room and get MPs involved. So we have had some MPs come forward and say actually I've got people within my constituency who are really struggling and I want to support you in this. So Ideally we reach that hundred thousand signatures so that it gets discussed in parliament. We're at twenty three and a half now. We're really hoping to have a really big push. But from that we made great connections of MPs at once. That campaign ends want to be handy in. You know, go and take that shoebox and hand it over. We also have a room where we can have MPs coming in the napkin the day and but also working closely with those MPs that have come forward. That campaign has opened the door to so that we still got up in the door with, still pushing, moving it forward. It's what it's done really well is highlight the issue and highlight that that is a problem and that problem is being acknowledged by people. So I think going forward is that we're continuing to push, getting more people on board that have influenced, help things and also working with the medics as well to save them. You know what can we do to help if you want to get involved in this. How can we Help with awareness and training and education so that you're able to best support patients as well, just pushing everything in the right direction to hopefully make things better for patients.

    Angela Walker: 25:14

    The government did talk about and I have a mobile seen jones being outlined in the major conditions strategy. Do you feel like the condition is being overlooked?

    Sarah Hamilton, Ehlers Danlos Support UK: 25:27

    Yes and, I think, trivialize slightly in the sense of that it's. It's kind of yeah, we acknowledge it, but there's not much that can be done. There's no cure. The physio and it will be okay, it just seems to be that needs to be looked at. They did initially as well, with their reply, discuss the red seeds framework. We immediately come back and says not read these, so it doesn't come under that. Which is that? Now they've come back and said about the major conditions strategy and about the msk services and we've just said it's just not enough. There needs to be more and there needs to be an investment in this, especially with the amount of people that you know. It isn't got huge proportions of people who are affected by this. The difference it will make people would be huge if that investment was, and so thank you so much for talking to me.

    Angela Walker: 26:20

    Say it's been really interesting, thank you. Thank you, angela. Today I've been in conversation with Sarah Hamilton from Ellers Damlock support UK. I hope you've enjoyed our chat. Please do share, review and rate us, because that means, due to the algorithms, more people will get to enjoy this show. Thank you so much, and if you'd like to get in touch, you can contact me through my website, angela Walker reports dot com.

  • Angela Walker: 0:07

    More people have climbed Mount Everest than have swum the English Channel. That's how tough it is, but it hasn't stopped my guest today. She's just swum the channel solo in just over 15 hours and she's done it to highlight the issue of water pollution. I'm journalist, angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. Today I'm in conversation with Laura Reynicka. Laura, thanks for joining us. First of all, congratulations. Such a huge achievement and how do you feel?

    Laura Reineke: 0:42

    It was the best day ever. It was the toughest day ever, but the best day ever, absolutely fantastic.

    Angela Walker: 0:48

    So what was it like? What were the conditions like for that swim?

    Laura Reineke: 0:53

    Well, I started at about 2.30 in the morning, so it started off at night and the sky was really dark, the sea was really dark, it was quite cloudy and there was no differentiation really between the sea and sky and there was a big swell. It wasn't choppy, but there was a big swell. So the boat was going up and down. I was going up and down and I've never been seasick or motion sick before, but I was, and for the first three hours I was wretching and being sick and I actually thought the first three hours was eight hours. That's how bad it felt and I was in my head. You get little demons and this demon saying you're not going to make it because you can't keep your feet down, you're now feeling cold, because you're feeling poorly, and then you think, just put your big boy pants on and do it. You've trained for so long, just do it. So the sky got a bit lighter, I started to feel better and then the sun came up and I warmed up a bit. So it was all good.

    Angela Walker: 1:44

    Amazing. So how can you possibly train for something like that? Talk us through it.

    Laura Reineke: 1:51

    You have to be completely single-minded. You have to know that you have done everything in your power to make it to France, so that if you are pulled out for medical reasons or any reason at all, you know it's not your fault, because that could really that would be a very tough thing to get over.

    Angela Walker: 2:11

    Yeah, is it like when you run a marathon and then you like hit the wall and you're like I don't think I can carry on anymore and then suddenly you managed to get this kind of burst of energy that like sees you through?

    Laura Reineke: 2:23

    I didn't actually hit a wall. I had done all my training. I think out of the whole year's training I only missed three sessions and I had literally dedicated my any spare time to training. So I didn't hit a wall. I'd done the training, I was okay. Some people do hit a wall and you have to get past that. I think probably my wall wasn't a physical one, it was that first mental one. 90% of it, I would say, is mental strength rather than physical. Gosh. And how cold was the water? Do you know what temperature? It was? Between 16 and 19. So it's always slightly colder on the English side, of course. And then in the middle, in the separation zone, you get really cold and hot patches. It's very strange. You'd think, as it's one body of water, it would all be one temperature. But it isn't. And then on the French side it got to 19, almost in inshore waters.

    Angela Walker: 3:11

    So, and it's about 20 miles, am I right? 21. 21, get the extra marmots so the difference. So that's a, and you're swimming for a long time. What kind of things do you see while you're swimming that distance? So is that I actually swim?

    Laura Reineke: 3:27

    56 kilometers. You don't see an awful lot. It's quite, the water's quite milky and you can don't see a huge amount, but there are a lot of jellyfish. Jellyfish are the cleaners of the sea, so there seem to be a lot more of them at the moment because we're filling our waterways with poo.

    Angela Walker: 3:45

    Yeah, I definitely want to talk to you about the sewage pollution actually. But back to the swim. Did you see any boats or any?

    Laura Reineke: 3:52

    traffic, yes, lots of traffic. So you go, there are different zones in the channel. You start off on British inshore waters and then you have the British shipping lane, where the ships go one way, and then you have a separation zone and the French shipping lane, where the ships go the other way, and then in French inshore. So, yes, you see a lot of huge, huge tankers and things like that.

    Angela Walker: 4:14

    Wow, that's amazing. And there you are in the water, so small, bobbing around, trying to make your way to France.

    Laura Reineke: 4:21

    When you think of it like that, it does sound a bit strange, doesn't it? I think we, as swimmers, normalise things like this. So, really, for me, it was just another day swimming, even though it was massive, don't get me wrong. It was just another day swimming because you have to normalise it in order to be able to do it, because actually, in real fact, it is an extreme sport.

    Angela Walker: 4:43

    Yeah, of course of course it's so far and of course you've got like a support boat and told me through what the support's like. Who's there? What are they doing to help?

    Laura Reineke: 4:54

    So you have a pilot boat and he has his own crew and he. So there was my pilot, eddie Spelling, and he had two crew, and then I have my own crew. There were three people on my crew my friend, lee, another mermaid, joni, and Debbie Fraser. So one person fed me and kept control of my nutrition. One updated social media and we were live on BBC Radio Bach for quite a lot that day, and the other one was sort of motivational and kept me going on relaying messages from friends and family from the WhatsApp group onto a whiteboard so I could see some of them. Great, I bet that kept you going, did it? Oh, absolutely yes, that. And Debbie was amazing on my feed. I didn't even know what was coming next. I couldn't really. I tried to eat some solids but they all just feel like dust in your mouth with the salt and so it was liquid feed only. Really, how did she do that? So it's on a line, on a reel, basically, and they chuck a bottle to you on a line. You down it as quickly as you can, still kicking so you're not losing ground, and then drop it and they put reel it back in again. Wow what a setup. Gosh, it's amazing.

    Angela Walker: 6:11

    So talk to me about the Henley Mermaid. How did that get started and what's that all about?

    Laura Reineke: 6:16

    God started about six years ago. We all I've known two of the Moments for a very long time because of our kids at similar ages, but we all really met through Henley Openwater Swimming Club and decided that we didn't just want to swim on Saturday when the club swimmers were. So we set up a WhatsApp group which I called Henley Moments and we swam together. We get on really well. We're like sisters. We bicker as well and we argue and we you know, it's just like a family. And I had the bright idea one year because I'd heard other people have been doing it and another group in the club had done it to do an English Channel Relay, and I managed to con all the others into the fact that it was a really good idea. So that was in 2020. So we did the English Channel Relay in 2020 and then the Bristol Channel in 2021 and last year the North Channel, and we do various other swimmers, and each year we have a charity we raise money for.

    Angela Walker: 7:16

    So it sounds. It is sort of escalated.

    Laura Reineke: 7:19

    It has escalated hugely, mainly because last year our charity was Surfers Against Sewage. So Jo Robb, who's one of the Moments, she is also Green Councillor on South Oxfordshire District Council and she's been going on about the sewage pollution for some time, so she initiated it really, and then we've all just learnt a huge amount through Surfers Against Sewage to begin with. And then another thing we did last year was swim the length of the Thames from Source at Castle Eaton to Henley, and on our last stretch in November we swam under the bridge and then had a protest in Henley against sewage pollution, and from there it just skyrocketed and we now are amongst some of the top campaigners in the country for clean water.

    Angela Walker: 8:12

    What can we do about this sewage pollution? Because I mean, I've done podcasts on this, I've been reporting on it myself over the years and there is a legal case being brought against some of the water companies for underreporting the amount of sewage that they are dumping. But what do you think can be done?

    Laura Reineke: 8:30

    I think the only thing we can do we're slightly powerless in this is educate. Really, the failing water companies have relied on our ignorance to what's been going on and they've been unregulated because the regulators environmentally-oriented of what have just been underfunded lost all their money. They have not been pulling them up or regulating them in any way, almost so they've just been getting away with it. But now they're beginning not to get away with it. We need a government that will put really, really strong environmental measures in place, not softening them like they're trying to do at the moment, and we need to make change soon. We are in a serious water emergency. Temp's water are extracting a huge amount of water from our waterways and then putting it back into the system for us to use and then losing a third of it to leaks. So our rivers are really low and they get even lower and then they spill sewage into it, so it's much more concentrated. It's killing wildlife. It's killing the rivers are in really, really poor health and some are dead. The only way we can do it is to make everybody aware so that they can't get away with anything any longer.

    Angela Walker: 9:49

    What do you think about this legal action? How confident do you feel about that?

    Laura Reineke: 9:54

    Oh, very confident. We have proof that they have illegally dumped what is known as dry spills when there hasn't been any rain. In fact, one was on the hottest day of the year last year when there were hundreds of people in the river cooling off. They come up with all sorts of excuses that oh no, that wasn't a spill. I know it was on the EDM map, which is their monitoring of spills, but it was actually a mistake on one of the readings. Well, it's not true. We do have proof that they have illegally spilled.

    Angela Walker: 10:23

    Yeah, it's supposed to be in exceptional circumstances. And one might argue, if it's for 100 days of the year consecutively, that's not exceptional, is it? That's the norm.

    Laura Reineke: 10:33

    The service treatment works. Simply don't have the capacity.

    Angela Walker: 10:36

    You've been in good company, because I know that you've done some campaigning with Fergal Sharky and I've seen you with Steve Baxial. How has it been kind of like working alongside, campaigning alongside people like this.

    Laura Reineke: 10:50

    We've had a fantastic thing we call it mermaiding and we've taken our mermaiding to some fantastic places purely by the power of saying yes to things. We've got to do things that nobody gets to do. For instance, we got invited to Chelsea Flower show by a sculptor who uses reclaimed things in her gardens along with her sculptures, and we had to pose in our swimming costumes on press day at Chelsea Flour show and that sort of thing. But we've got to go to the house of Parliament with Fergal Sharkey and we've got to go to Steve Batchel's house and film with him. What a lovely man and we all swam in the river outside his house. And, yeah, we get to do some really fantastic things and these people are really important to us because they're basically our heroes and they are supporting the campaign. That sort of thing will make a difference.

    Angela Walker: 11:42

    So where are you going next with this campaign against sewage pollution?

    Laura Reineke: 11:47

    We are continuing our campaign and we'll just keep going until our river is happy and healthy. The poor Thames is really limping along. It's in really poor health. We want to see, first of all, the Thames cleaned up. We want sewage treatment work in Henley to have a proper upgrade. So sewage treatment works. Some sewage treatment works are due for upgrade in 2025. Thames water are only spending about two million on each upgrade, which means that they're not doing enough of an upgrade to stop them spilling, so there's absolutely no point in them doing it. They also aren't providing any sort of cleaning system to clean off the bacteria. So at the moment, all the sewage that passes through sewage treatment works and comes out the other side as treated effluent and is apparently clean water hasn't been cleaned of bacteria. So it's still got pharmaceuticals in it. So it's got antibiotics, recreational drugs, it's got hormones, e coli and all the things that fecal bacteria produce and that's going straight into our waterways and generally it's released into the tributaries that feed the waterways, where places where fish go to breed. So we've got antibiotic resistant fish. Swan numbers are down. It's really a horrific tale that people don't realise.

    Angela Walker: 13:21

    quite the same Like the scale of and I know we sort of touched on it earlier is in that the government was trying to relax the rules to do with building new houses. How can we get this balance between looking after our waterways but also providing new homes, which are desperately needed?

    Laura Reineke: 13:42

    It won't cost any more to use rainwater collection systems than it will to join it up to our combined sewers. Our problem here is we have combined sewers so all the runoff from roofs goes in with all the water from your toilet system. This is our problem, but there's been no investment into infrastructure since privatisation. Foreign companies own our water and it's easy for them. They're making really easy money and have absolutely no consequences. In fact, we need to have existing houses moved over to rainwater collection and to brownwater use for our lose and for that sort of thing. We are in a water emergency. North London in the very near future will be will be rationed on their water we are running out. It's a shared resource that isn't shared. So over 50% of the water that we use is used by the elite and the mega rich up in the Chiltern Hills with their swimming pools, their hot tubs and their big gardens, their watering. The other 50% is used by the rest of us. So it's not a shared resource that it should be.

    Angela Walker: 14:52

    That's really fascinating. I had no idea about that at all, and I want to touch on something else that you're really passionate about, which is Henley Music School. Tell me about your involvement, and I know that you're in a bit of trouble at the moment, yes, like many charities, we're struggling to raise the funds.

    Laura Reineke: 15:07

    So about 16, 17 years ago I set up Henley Music School. I set up Henley Music School in response to the government's pulling of funding for schools, when my children were at primary school in fact, and people kept coming up and asking me to teach Johnny the violin or to run the orchestra. And as I was running the orchestra, eventually it got to just my three children in the orchestra and I realized that kids just weren't learning music. In fact some schools they weren't even singing in assembly and in other schools there weren't even a teacher that could read music. So I thought, well, something has to be done here, because there is nobody to teach this subject and the kids simply aren't learning it. So it started off as sort of afterschool club and a bit of a, you know, groups and individual lessons. And at that time the Henley Festival set up a children's orchestra called the Henley Festival Orchestra and I ran that for a while. When they pulled funding for that, they asked me to take it on as Henley Music School, which I did, and suddenly I got like 70 extra kids. So I thought, oh, I need a bit of governance now. So it made it into a community interest company and it just grew and grew to the point that we need 60 grand a year to run. So it made charitable conversion and up until about two years ago we well COVID really raising the 60 grand a year wasn't too difficult. I mean, it was work, but it wasn't too difficult. Since COVID it has become really virtually impossible, and that's no exaggeration. Everybody's feeling the pinch. Our usual funders are either not engaging at all or just aren't giving as much, and because they're inundated with applications by all the other charities that are struggling. The worst thing about all of this is these charities shouldn't exist. I shouldn't be campaigning for clean waterways, I shouldn't be running a music school, because the government should be doing these things. They should be providing our children with a decent all-round education to make them decent human beings and active in communities and making the world better than when they arrived in it. At the moment, they're not. In many cases, the children leave school feeling absolutely useless because they've been made to do maths, english and science and that is it. That child may be a fantastic artist, a musician, a creative, and they've been made to do these subjects that they're not good at. So they leave with low grades and then they're made to feel silly and then they go and hang around on street corners and behave badly. They don't become decent members of society because they don't feel like they're wanted or needed or they're worth anything.

    Angela Walker: 17:58

    So what role? Tell me how it works at Henley Music School? Do you go into schools and teach kids? Talk me through that.

    Laura Reineke: 18:06

    So we provide all forms of music education to anybody. So we do curriculum in school lessons, we do in school clubs, after school clubs, individual lessons, ensemble work groups, everything you can think of, and for all of those activities we provide batteries of up to 100% so and free loan of an instrument, and we work with the school budget so no school pays the full price. What we try to do is take away any barriers to learning music. So refugees get automatic free lessons, people, premium children that's children on free school meals automatically get free lessons and some children on the autism spectrum get specialist piano lessons. Now we do this in a school in Henley that has a high number of children with additional needs, and the head there is absolutely amazed at the difference in their attitude to learning, their behavior and how it has affected the whole class, because they are more engaged and they're looking forward to playing the piano and their brains are being used differently.

    Angela Walker: 19:12

    Why is music so effective? Is it such a healer, do you think?

    Laura Reineke: 19:18

    It makes you feel something. People like different styles of music, different. I mean, you'll listen to different things from me, but everybody listens to music because it makes you feel something. It uses a different part of our brain and many of these children now aren't having that part of their brain used. But it's the part of the brain that makes you find motor skills better, your teamwork better, your concentration, confidence, everything. And the kids now the COVID children that are now in school have a really low understanding of communication. The teachers are really struggling with the cohort of kids that have grown up small and music is a brilliant way of bringing them together and making them work as a team and being able to relate to each other, but they're just not getting it.

    Angela Walker: 20:07

    So how serious is the situation with Henley Music School and what will be the consequences if you can't get this funding together? It's very serious.

    Laura Reineke: 20:15

    We are at zero as of the end of this month. We have had to put a halt on all bursaries, so we are not paying our teachers. Luckily, some of our teachers are carrying on anyway, and we are just really struggling. I'm looking at taking redundancy or unpaid sabbatical to save the charity money in order that we can preserve these bursaries and provide what we promise we will provide, but that leaves me as the only income earner in my household, without an income. We're at an emergency stage.

    Angela Walker: 20:53

    We need funds now, if anyone's listening and they work for a company that might be able to help out, or they could be an individual that wants to help out. What's your message to them?

    Laura Reineke: 21:06

    Please come and talk to me. I can tell you all about music school and I can show you the benefits that these children feel. People might think that well, a county council have a music service, but they've never had a music service in Henley because Oxford's such a long, thin county. The teachers mainly come from Oxford and they're not going to drive for an hour each way to teach two clarinet pupils or something like that. We really need it in Henley. All kids need it.

    Angela Walker: 21:33

    I mean, people might think well, henley is quite an affluent area, why does it need a music charity? What would you say to those people?

    Laura Reineke: 21:42

    On the outward-facing face of Henley. Yes, it would look affluent and don't get me wrong, there are a lot of very wealthy people in Henley, but equally there's a whole other side of it. We have the same families from low income. It's no different from any other, any other town really, only that it looks posh.

    Angela Walker: 22:03

    Norah, thank you so much for talking to me today. It's been a pleasure.

    Laura Reineke: 22:05

    Thanks for having me.

    Angela Walker: 22:07

    Thanks for listening and I hope you've enjoyed the show. Today I've been in conversation with Henley Mermaid and English Channel swimmer Laura Reynicka. If you have enjoyed the show, do leave us a rating and subscribe, because it does mean that, due to the algorithms, more people will get to find out about the podcast. And if you'd like to get in touch, drop me a line through my website on AngelaWalkerReportscom.

  • Angela Walker: 0:07

    Learning your child has a life-threatening illness as every parent's worst nightmare, but imagine then losing your job and financial security as well. That's what's happening to thousands of parents across the country who are taking time off to look after their sick children. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. Today I'm in conversation with Christina Harris, who's lost her job of 19 years because she's been taking time out to look after her daughter who's got leukaemia. She's petitioning the government to change regulations to protect the jobs of people like her. Thanks for joining me, Christina. I'm really sorry to hear that Skye's been unwell. How is she at the moment?

    Christina Harris: 0:57

    She's currently doing really well. She's back at school. She just started secondary school and she's doing really well at the moment. We're just seeing most of the someone in hospital, unfortunately because she had an infection, but she's off her antibiotics now and she's doing okay at the moment.

    Angela Walker: 1:14

    That's good, and it must be a relief for her to go to school and see her friends. A bit of normality, I guess.

    Christina Harris: 1:21

    Yeah, she loves it and she's really enjoying her new school as well, which is lovely, and I think she needed a bit of a fresh start. So, yeah, it's good.

    Angela Walker: 1:30

    And I'm a mum myself and I can only imagine how awful it is to learn that your child's got serious illness. How are you coping?

    Christina Harris: 1:43

    I take one day at a time and sometimes I take an hour at a time. Some days I'll be more challenging than others and I just try to second, to be strong for her and for her brother. Yeah, that's the best I can do.

    Angela Walker: 2:01

    Could you tell us a bit about Skye's illness? When did you realise that she was unwell?

    Christina Harris: 2:08

    So a week before she was diagnosed she was in pain in her rib. I didn't obviously think at the time she was anything serious, but I took her down to the doctors. It was a Friday afternoon. I took her to the doctors on the Monday and he checked over, listened to her and he thought there might be anxiety pains. So we kind of went home thinking that might be the case, because she had suffered a little bit with anxiety just before then. So I very quickly realised that it wasn't because she was complaining of the pain in her sleep in the night. So I knew it wasn't anxiety obviously. So I took her down to A&E and asked for them for X-ray of her lungs just to make sure there wasn't anything there, which they did, and they did an ultrasound as well. And so three different doctors on this occasion, because they all wanted a second opinion. And it turned out she had a tiny little bruise on her, on her lung, which they thought might be due to a fall or some kind of injury, but nothing that we could remember she had done. She hadn't done anything, so they had sent us home with antibiotics hoping it would kind of clear, and then we left it a couple of days and it didn't get any better or worse and she was in a lot of pain, particularly at night time. So I took her back down to A&E and this was on the 7th of December, the day she was diagnosed in the middle of the night and they did another x-ray on her lungs, which at this stage were both filled with pneumonia, which is what caused the pain. And then they moved us up to the ward the children's ward where they just ran routine blood tests as they do and started antibiotics right away, and the blood came back really quickly and the doctor came in and told us she had leukaemia.

    Angela Walker: 4:05

    That must have been such a shock, Christina.

    Christina Harris: 4:09

    It was awful. I just, yeah, I mean, I couldn't. I couldn't even talk, I couldn't even say anything to the doctor, I just walked away crying um, yeah, it was horrible. I just it didn't feel real at all and I didn't understand that it just happened so quickly and you know, she had to show no obvious childhood cancer symptoms leading up to this. So it was a real, real shock.

    Angela Walker: 4:35

    I'm so sorry. I'm so sorry, okay. Okay, so you're a working mum. And what happened then? When you told your employer because you know, skye needs your help, she needs her mum to look after her what happened when you told your boss that your daughter was really poorly?

    Christina Harris: 4:58

    I initially phoned my manager and told him and obviously I've worked with him for many years and he's a good friend of mine and he, you know, obviously just said you know, you know, just go and be with Skye, which was obviously what I was going to do, regardless, because you know you would drop anything to be with your child. So we were very quickly rushed up to Great Ormond Street Hospital and after a few days I've got a call back from them and they spoke into the owners of the company and they just said you know, just do be there for Skye, don't even think about work. Um, you know, we'll help you as much as we can, just be there for her now and we'll, you know, deal with work in the new year. So I did that and yeah, which was lovely to hear because obviously I didn't want to worry about work as well.

    Angela Walker: 5:49

    At what point was it that the company turned around and said well, you know you're going to have to leave?

    Christina Harris: 5:56

    She was diagnosed for Christmas, just after the new year, I got a call to say they they were unable to pay me for the time I needed to offer her, which I was. I think I was shocked about it because obviously I was hoping there might have been something in place but there wasn't. That took a little while to get used to the idea of no pay for unlimited amount of time. So we just I just obviously carried on looking after her for a few months and then I had a further meeting with them about six to eight months later, but it wasn't until a year after that I'd had a whole year off on page with her that they told me they couldn't hold my job open any longer.

    Angela Walker: 6:42

    How did that make you feel, Christina, at the time?

    Christina Harris: 6:47

    I was shocked and upset. I guess it was hoping bearing in mind, you know, i'd been doing that same job for such a long time that there would have been some kind of middle ground. I offered to work from home and I offered to come into the office and days where I was able to, because she might be attending school. But yeah, everything I suggested wasn't. I was just told it wasn't going to work for the company.

    Angela Walker: 7:16

    Research by the University of York called Make Every Child Count showed that around 90,000 children in the UK have got a life limiting or life threatening condition. That's an awful lot of children and an awful lot of parents in your situation. Now I know that you would like to see some change. Tell us about this petition that you started.

    Christina Harris: 7:40

    So the petition is to try and safeguard parents jobs, basically, and for the government to offer career breaks to parents who are off for an uncertain amount of time to care, you know, for the seriously ill child. I'm not asking for it to be paid, I'm just asking for unpaid leave until you're in a position where you're able to return to your job, and that is that. Yeah, that is basically the petition. I mean, there's lots of other issues around the support that parents with ill children get, but yeah, I'm fighting this fight at the moment and hopefully we'll get somewhere with that.

    Angela Walker: 8:23

    And employers will probably say, well, they have sympathy but they need some kind of continuity. What would you say to them? What kind of what are the practicalities that you could offer really, that you could suggest would work for somebody in your situation who's got a really poorly child that they need to look after? And balancing that with kind of you know, the needs of a company?

    Christina Harris: 8:49

    Obviously, I understand that companies can't go without an employee for that amount of time. I wouldn't expect that no one can. What I was hoping could be implemented is that the parent take, obviously, a career break with unpaid leave and they will have a temporary member of staff come in for a bit like maternity or paternity leave, if you like, and then maybe with a view to extend it if the parent needs a bit longer off with a child, which obviously the government funds already. So I don't see any reason why something similar couldn't be brought into to help parents in this situation.

    Angela Walker: 9:32

    It doesn't seem unreasonable to me that someone in your situation could take a year or so off and then somebody else could be brought into to cover that position on a temporary contract. Now let's see what kind of reaction have you had from people about your petition.

    Christina Harris: 9:49

    I've had I would probably say 98% has been amazing feedback. People they have been in the same situation almost for a routine beyond for this to go through and people are shocked. They've been in situation years and years ago and they're shocked that nothing still hasn't been done about it and we're still in the same place as they might have been 20 years ago. It's been amazing feedback. I've had so much support and you know people telling me, you know thanking me even for doing this, because this is not for me. You know I can't change what's happened to me. This is for future parents. They might find themselves in in the same unfortunate, awful situation. I'm fighting a battle for them. Basically, yeah, so I realized that obviously no, no companies can go without members of staff for a long period of time and that's that's not the aim of the petition. It's just to hold the jobs open, get hopefully funded by the government cover and that way, you know, no one have to end up losing their house at the end of it.

    Angela Walker: 11:00

    Now let's have a look. Your petitions are over 60 000. I know. If it gets to 100 000 it will be considered for debate by parliament, and you have had a reaction from the government. I'm going to read that out. It says the government understands the difficulties, worry and challenges faced by parents with seriously ill children. While the government's very sympathetic, it is not practical to provide a specific right to take time away from work and cover every challenging situation that an employee may face. Many employers are already very supportive when people find themselves in these situations. The government currently has no plans to introduce a specific right to take a career break for parents with seriously ill children. However, the government is supporting legislation which will provide support for parents, including those caring for ill children or facing other difficult circumstances. They're mentioning help for people with sick newborns and also plans to make flexible working easier. But what do you make of that government statement?

    Christina Harris: 12:07

    I don't really think they're addressing my petition properly. If I'm being honest, I was a little bit disappointed with the response. I don't feel they're actually really dealing with what I'm asking for. I'm offering weeks on pay leave for carers per year. If you have a two and a half year treatment plan with a very sick child, that's just to drop in the ocean. That's not going to benefit you very much, if at all. So yeah, I'm disappointed with the response so far, but I don't really think they're addressing the real issue here. None of those things they're offering really benefits what I'm petitioning for, unfortunately. So I'm going to keep going and hopefully somewhere along the line I couldn't get them to change their minds.

    Angela Walker: 12:55

    How are you finding the strength to keep up with this petitioning. Because you've got so much going on looking after Skye and your own worries.

    Christina Harris: 13:07

    How are you managing to keep going. Really, you know it has been tough. It does take up a lot of my time. On a positive note, I would say he's kind of shifted my focus a little bit too. It's very easy when you're in this situation and you have an ill child to focus on her health the whole time and also the negative side of things and the worry and the what ifs and the fear. In that way it's helped me a little bit to have a different focus and just changed my direction of thoughts a little bit, and all the amazing comments I'm getting from people on a daily basis are just wanting me to keep going.

    Angela Walker: 13:48

    What's next for Skye's treatment plan?

    Christina Harris: 13:52

    Yes, she has chemo every single day and she will have chemo every single day until she finishes next year and she's obviously hopefully we could stay at the hospital for a little while, fingers crossed, because she has been very unlucky. She's just caught everything going, but, yeah, we've been very, very unlucky. I'm hoping we'll have a few weeks for the hospital visits. In terms of treatment, she's in the maintenance part of her treatment, which is a two-year long period where she has daily chemo and she has a chemo infused at the hospital once a month and she has lumbar punctures and chemo injected into her spine at Great Ormond Street hospital as well. That's the stage we're in at the moment, which, in terms of medication, it's a lot less than obviously it was right at the beginning when she was receiving her frontline, really, really intensive treatment. So she's feeling generally a little bit better all the time. Obviously she has. I think her normal feeling now is chemo. She doesn't know if you're slightly not to have chemo in her body because she has it constantly. But yes, we reached a fairly not too intrusive phase of the treatment and I'm just hoping that we can stay at the hospital for a while.

    Angela Walker: 15:18

    It sounds like you've sort of adjusted to a new norm which is getting you through it really. And so you're talking about the financial situation, because you were at this job for 19 years and they've told you you couldn't keep the job open, even working part-time. So how are you managing to cope financially, Christina?

    Christina Harris: 15:45

    So I'm receiving Universal Credit and there's some extra benefits that we get because sky is ill, so they are kind of tiny silver. It doesn't obviously cover all our bills, but what she was initially a diagnosis, one of my friends set up a GoFund Me I would go find me a page which has helped us immensely over the last year and a half and that's what we fall back on to when we're struggling and also contacting charities. There's a lot of charities. This helped us a lot as well and they've been amazing. But yeah, it is a constant battle and it is a constant worry and you're constantly filling in forms asking people for your help, but there is no other choice. Unfortunately. I just I have to keep going at it, unfortunately.

    Angela Walker: 16:38

    Well, I really admire you, christina, for all your campaigning. You know to help other people in your situation because you know when you've got a sick child, finances should be the last thing that you have to be worrying about. So I'm really sorry you've been going through that.

    Christina Harris: 16:57

    Thank you, yeah, I don't. It shouldn't be a choice, and it's really sad that when the situation where you have to choose between looking after your child or going to work and that's, yeah, it's just not right that really, really needs to be urgently addressed.

    Angela Walker: 17:14

    Well, I wish you all the best and I wish Skye all the best and her treatment and a speedy recovery, and I hope that she's completely clear very, very soon.

    Christina Harris: 17:25

    Thank you so much.

    Angela Walker: 17:26

    Thank you, christina, for joining us.

    Christina Harris: 17:27

    Thank you. Thank you for talking to me.

    Angela Walker: 17:30

    Today I've been in conversation with Christina Harris. I hope you found the program interesting. If you have, please share, subscribe and review. That means the algorithms will make sure that more people get to hear this program and if you'd like to get in touch, you can do so through my website, angelawalkerreportscom. Until next time, take care.

  • Angela Walker: 0:06

    30,000 women and around 7,000 men suffer post-traumatic stress disorder every year after having or witnessing a traumatic birth, and those are just the reported figures. The real number's probably much higher. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guests today are Kim Thomas from the Birth Trauma Association, and Venelin and Angelisa Nikolov, who both suffered post-traumatic stress after the birth of their daughter. Thank you so much for joining me, kim. I want to talk to you in a minute about the work you do and your findings to do with birth trauma, but first I'd like to hear Angelisa and Venelin's story. So thank you for sharing your story with us today. Angelisa and Venelin, thank you. First of all, can you tell us about your daughter? I think it's her birthday this month. Is that right?

    Venelin Nikolov: 1:04

    Yes, so her birthday is going to be on Saturday. In about three days from today, she's turning two, and I mean she's a lovely, lovely child which we love very much, even though the experience that we had with having her was not the most amazing or what we imagined. Everything turned out well at the end and she's healthy and well. Angelisa, too.

    Angela Walker: 1:46

    So, Angelisa, before we get on to the actual birth experience itself, how was your pregnancy?

    Angelisa Nikolova: 1:55

    Oh, the most amazing experience. I had it was just the perfect pregnancy. I loved it a bit of it.

    Angela Walker: 2:06

    And so I know, when we're pregnant, we're asked to draw up a birth plan and I guess, as a couple, that's something that you sat down and did together. What was involved with your birth plan? What were you hoping your birth would be like?

    Angelisa Nikolova: 2:23

    I was planning on a water birth to have this safe space with silence, some music, some things a lot of crystals, this kind of stuff. So I wanted something like that - out that, nothing, completely zero.

    Angela Walker: 2:46

    So what happened on the day that you went into labour? Can you talk us through that? Because, I tell you, the day when I went into labour is etched in my head. It's something you really remember, isn't it? So what was it like for you?

    Angelisa Nikolova: 2:59

    Well, for me it was a slow start. One of the membranes broke and I was like I think my water broke, but it's not the full water. I didn't want to call the hospital at first because I wanted to take my time, to give my body and the baby time in order for things to get going. I didn't have contractions then and that was Monday morning. After the whole day I still didn't have any contractions, and then we decided to call in for a check. And that's when my mindset broke a little bit, because as we went in for a check, the stuff was lovely. We went in a different department of the maternity ward, so it was a lot, very easy and lovely people, dark, so it was very, very welcoming. But then they told me if I didn't get any contractions within 12 hours, I had to be induced. So my dream of water birth was already gone in that moment. So, yeah, they sent us home and then obviously I didn't sleep. So I think things would have gone faster if I was still in a relaxed state of mind, but I didn't have the relaxed state of mind anymore. So the day after, it took half a day for me to get the contractions going in all the natural ways, I knew. And still they wanted me, they wanted to induce me. So, yeah, we went to the hospital and the night after and I was still stubborn saying, listen, my body is starting to work. So I bought a little bit of time, but then eventually they induced me. They broke my water.

    Angela Walker: 5:23

    It's interesting because, you know, for a successful natural birth, we hear that the woman has to be relaxed. But of course, if you're going into a medical scenario, that's not a very relaxing situation, is it, kim? And I know when I went in to have my daughter, I was supposed to be going into the midwife led birthing unit. I was supposed to be having a water birth. When I got there, that wasn't available to me. Other things in the same way as Angelisa's experience, these things that I had planned, they just weren't an option from the moment I got to the hospital and that did put me in a frame of mind that was not relaxed. Actually, it made me feel very tense. Is this something that you hear a lot about? The birth trauma association Not being able to follow their birth plan?

    Kim Thomas, Birth Trauma Association: 6:24

    Yes, I think there are a couple of things there. One is, of course, that birth is unpredictable. So you can have a birth plan up to a point about what you'd like, but you can't always control what's going to happen. So I think you always have to be ready for that. I think one of the things I find difficult as well is what you said about your experience. The midwife led birthing unit was kind of lovely, relaxed. They do everything they can to make you feel comfortable at home, and at home If you have some kind of interventional medical emergency, you're put into the obstetric led unit, which for some reason never looks as nice or as relaxing as the midwife led unit, and I'm not quite sure why that is. I don't see why they can't make the obstetric led unit as pleasant and as welcoming as the midwife led unit. It seems very unfair because it's nothing you've done. It's not your choice to be in a different environment. So I think that's one issue they could address actually is to kind of make obstetric led units feel as relaxing and as welcoming as the midwife led unit.

    Angela Walker: 7:32

    My friend lives in New Zealand and she had the same midwife throughout her pregnancy and that woman was there when she gave birth and she became friends with her. So when she went into labour she was really giving birth with the assistance of a friend and she found that so reassuring. But I had multiple medics when I was giving birth and I know that's something that a lot of people do have in this country. Could we do something about that, Kim? Do you think A bit of continuity in there? I think we could.

    Kim Thomas, Birth Trauma Association: 8:12

    It's quite complicated, of course, because you can't guarantee that the midwife who saw you throughout your pregnancy is going to be available when you go into labour, and if you have a very long labour, then midwives work a sort of limited amount of shifts. But I think we could certainly move to a sort of scenario where you see maybe two or three midwives and form a relationship with them and I think the other important thing is that whoever cares for you in labour it's really important there's a continuity in the sense that, even if they don't know you, they're familiar with your situations. They've read your birth plan, they've read what your community midwife might have written about you, so that they're well informed about your own particular situation, and that's something that's often missing, I think. And certainly when I gave birth, which was quite a long time ago, I had very long labour, but I went through several shifts of midwives and I think that's quite dispiriting as well, actually, that you go, you see one midwife after another.

    Angela Walker: 9:14

    And I found that every time a new midwife came in she wanted to see how dilated I was, and so that's a very intrusive test, and every time that happened I felt that set me back in my labour because, as Angelisa said, you can't be relaxed when you've got people checking you and stuff all the time. Angelisa you said about then they insisted on inducing you, which you didn't really want, but you were induced. Talk us through what happened from that point of the birth onwards.

    Angelisa Nikolova: 9:49

    We went in and I remember had contractions. They weren't regular and I told them okay, but I just started them, so I'm going to get my time. I actually would love to go back home and as I asked this, I actually got the midwife in front of me rolling her eyes up and she said okay, then I'm going to call the doctor. They came back maybe three hours later I don't know, I don't have a clear sense of time during those days but it was after a few hours and I remember that it was two midwives and a doctor that came standing in front of me with this kind of attitude I don't know how to express it like crossing their arms. They said are you sure you want to go home? You're risking your baby's life, and at that point I was having actually regular contractions. So I was in a spot like I just want to go home for your attitude, but I am not able physically to go home to work right now, so I'm going to stay here, and that's what I remember. So that was one another thing that added up to like I don't need this here. I was extremely disappointed, I remember. So, anyway, at both my time and they said okay, then we are just going to check how dilated you are. And it was around, I believe, three centimeters. So we went all through the whole night and then it was the day after when they broke my water.

    Angela Walker: 12:00

    And Venelin. So during this time, Angelisa, she's been in labour for a couple of days. She's not very happy because she'd like to go home and the medics are telling us she can't go home and the birth plans just gone out of the window. How are you feeling at this point in time?

    Venelin Nikolov: 12:22

    Well, the first thing that comes to my mind is helpless, because I'm just a bystander. I'm mostly there to support her and, you know, even at some point before that she, before she went into labor, she was saying you know, I want you to be there and if I cannot say something myself because the situation of contractions, I want you to speak for me, which seems completely impossible, of the whole chain of events, the way it's going to, the way it went through, it just felt like that's really absolutely pointless for me to try and say something, because you're just staying there as a as I see it from the medical point of view, as an extra person. That's maybe, in a way, a little bit.

    Angela Walker: 13:27

    That's so interesting, my, where we had an emergency situation where my daughter was born. It's called shoulder dystocia the head is born and the shoulders are wedged. And one minute I was doing my hypnobirthing with my lavender spray and my affirmations you know, my body's ready to birth this baby. And the next minute they press this buzzer, all the lights come on, all these people ran in. My husband was pushed away and it was a medical emergency. So they they did have to do that because they have to act quickly to get the baby out, but he didn't know what was going on. Nobody told him. He was physically pushed away and I think he felt like you did, like just a bystander at a spare part. I mean, could more be done, kim? Do you think, to involve the partners and to explain what's going on? How could, how could the dads, the partners, be made to feel more involved and less like a bystander, as somebody who's just getting in the way?

    Kim Thomas, Birth Trauma Association: 14:42

    It's really interesting to hear your story because so many dads have said that to us and they have this moment where there's a medical emergency I mean shoulder dystocia being quite a common one where they're suddenly pushed out the way, they have no idea what's going on and quite often they feel this kind of real fear that they're about to lose either the man or their partner, or possibly both, and nobody's telling them what's going on and they feel completely useless. And that is really traumatising and often plays a big part of the dad feels traumatised after the birth, and I think we'd like to see two things really. One is for partners to be better informed during anti-natal education so they have good understanding of what might happen during birth and things that might go on. Obviously, that's true for them as well, but then I think during birth it would be really good to see, even during a medical emergency, if possible, that there's somebody there, a health professional who's there, whose job it is to talk to the dad and say this is what's happening, it's going to be okay, but this is an emergency. We've dealt with this lots of times and this is what we're going to do and I'm going to stand here with you while this is going on and obviously it's hard because of staffing problems, but I think that would make such a big difference for dads to have that support if they could.

    Angela Walker: 16:00

    So, Anjalee, you've been telling us your birth story. We got up to the part where you've been induced. Tell us what happened after that, if you would.

    Angelisa Nikolova: 16:15

    So at that point, as my water was broke, I started having contractions a lot faster and a lot more painful. I remember it was extremely weak, so I wasn't eating and drinking from like probably a day or even more, as I was told to do so. And then I ended up asking for an epidural. Which funny thing. They were asking me to stay still during contractions, but that's another story. So, yeah, I got the epidural and I actually at least mentally, let's say I got some rest. So I remember that I was asking during the epidural because I was a lot more relaxed. I was asking how long the effect lasts. Anyway, I want to feel my baby coming through, so I'll stop having the epidural when I'm ready. It went like this until I was 10 centimeters so 10 centimeters stopped having the other dose of epidural and they told me okay, you have one hour to push your baby out or we'll need to intervene. Now, I didn't remember this in that moment because obviously this requires like life or death, but I remember now that every woman goes on a transition time. So when you reach the 10 centimeters you get to this state. That gets you ready to push your baby out, and I didn't have that, as me, a lot of women didn't have that moment of recharging before the ring of fire. I remember that because of this, I tried to push my baby out and she wouldn't come out because it wasn't ready, probably yet they had to give me a pysiotomy to have the baby out. They used forceps to pull the baby out and because of that I still had the strength to ask. I still want to birth the placenta myself. And because of all of that, in the rush of everything, they told me, no, now you cannot do anymore. And they gave me an extra injection to push the placenta out. They kind of imposed me to give vitamin K to our list that we had decided not to. So there was this cascade of things that I had to say yes, because it was just rushing, rushing, rushing. I didn't have the time to ask why, what was going on, what's the benefit, what's the risk, so all the things that came back to me later on. So they launched this baby to me like literally, like she was a ball. She nearly fell. I remember this. They tried to stitch me up and I started feeling extremely sick and I begged for someone to pick the baby because I was too weak to hold her, so sorry. So I didn't hold her until four hours after she was born, and this is something I won't get back. No, whatever. And I remember all this cascade of things. No, we need to give you this, we need to give you this, we need to give you this. So I felt sick for three hours after she was born.

    Angela Walker: 20:11

    Thank you for sharing Angelisa, because I know that is painful. I can hear in your voice the emotion there, because it does stay with us, these feelings that we have after our birth. And Angelisa talked about that cascade of interventions. Now I know that before my due date, when I had one of my checkups, the midwife said I'm going to book you in for an induction on such and such day, and I said why would you be booking me in for an induction when I'm not even at my due date? I said no way, and I knew that I didn't want to have one unless it was absolutely necessary. But it was almost a procedure. You haven't even reached your due date. We're already going to book you in for an induction. And while I was giving birth and I decided I didn't really want to have any medication if possible, they were saying have some gas in there, have some gas in there. And then I had some gas in there and then I started being violently sick and so I felt these things were being pushed on me. I think Angelisa's explained that she ended up going down a path that she didn't want to. Is this? Is this common, kim? Why has this happened to us? What do you think? I?

    Kim Thomas, Birth Trauma Association: 21:30

    thought yes, that's an interesting question. I mean, what stood out for me from what you just said was the midwinter. I was saying I'm going to book you for an induction, not we think it might be a good idea to book you for an induction, or would you like to be booked for an induction? It's just, I'm going to do this and this is something we hear a lot I'm just going to give you a little examination to see how far dilated you are. I'm just going to do this, I'm just going to give you some gas and air, and that kind of refusal to ask the woman what she wants to do. So I think that's really common, that kind of, I suppose, and willingness to sort of send to the woman and just kind of telling the woman what's going to happen rather than seeking informed consent about what she'd like. I think your experience is actually very common. It's something we hear quite a lot and at that point you then feel very powerless. You think things are just being done to me and I don't have any say of this, I don't have any control of this, and actually maybe I don't want gas and air, and I certainly found the same with gas and air just made me it maybe Actually, maybe physically sick. So and you know, not everything is right for every woman, every, every woman is different and every woman is going to need or want different things doing birth, and that's one of the things we really really need to change is to is to require health professionals to be more women centered in their approach.

    Angela Walker: 22:59

    And after my daughter was born and I mentioned earlier that it was a complication called shoulder dystocia I didn't know at the time that they broke her collarbone to get her out. And I kept saying over the next day oh, there's something wrong with the baby, there's something wrong with the baby, she's crying, she's in pain. And they said oh no, you're just a first time mum, you're just panicking. And I said no, there's something wrong with her. And after three days, one of the nurses said oh, what's that noise? Clicky noise. And it was the end of the baby's collarbone clicking, clicking because the collarbone was broken and they didn't. They took her off for an x-ray because I was insisting you must do something. And they came back and they said oh yes, the baby's collarbone is broken. And they'd told me for days no, she's been checked by a pediatrician, she's fine, she's fine. And I was so devastated because my baby was in pain and I knew that she was and nobody had listened to me. That was very traumatic and I just felt like nobody was listening.

    Kim Thomas, Birth Trauma Association: 24:16

    Actually, and that is such a common experience that's something we hear a lot that refused to listen. And not just to refuse to listen, but that kind of dismissiveness saying, oh, you're a first time man, you know, you know this is the first time you've been through Like you don't know what's, what's going on, you're being over anxious, you're being over dramatic, you're being silly, all these things. And there have been several reports into maternity services at different hospitals, such as East Kent and Walken Bay, and that's a really common finding that women say they weren't listened to, and often the consequences can be really disastrous because of that. You know they can end in tragedy because the midwives and the obstetrics haven't listened to what the woman is saying, which is that something is badly wrong here, and so that's one of the things that we really needed to change.

    Angela Walker: 25:08

    After my birth they did say to me. One person said to me one time would you like to go to birth reflections? Which I now know was like a kind of counseling session, but nobody really explained and it was just had a baby. There's people coming with forms and things. Nobody really said. What you've been through was obviously quite traumatic. Would you like some help? Would you like some counseling? So it wasn't really offered to us properly. Angelisa Vaneline, were you offered any kind of emotional support after your daughter was born?

    Venelin Nikolov: 25:47

    I wouldn't say so. Something actually opposite. Probably 12, 12 hours more or less after, after the birth. Even one of the midwives when she walked into the room and she's surprising and she said, oh, you're still here. So actually, instead of someone offering a support, that's the most vivid thing I remember.

    Angela Walker: 26:14

    If it had been offered, Angelisa, would you have had some sort of counseling, some sort of therapy? Do you think Most likely?

    Angelisa Nikolova: 26:21

    Yes, at least. I didn't even know until three months ago that I could review my notes and should be thinking that something the midwives, what happened? I just didn't know that.

    Angela Walker: 26:43

    I think we've talked a lot about the medical profession, but also I certainly felt that when afterwards I spoke to people about the complications during birth, without exception everybody said the baby's OK now, so that's fine. And I felt that was very dismissive of the injuries I sustained during the birth, which were significant, which actually I still have trouble with my hips to date because of that birth, and that was nine years ago. But everybody said, oh, you know, baby's fine, which of course we want the baby to be fine, of course that's the top priority. But it doesn't really acknowledge what the parents have been through. You're nodding, angelisa?

    Angelisa Nikolova: 27:35

    Yes, yeah, because this is fun enough. I always say that's not the end goal. That should be the bare minimum. That the baby saved, that the mommy saved, that's for me. From my point of view, birth should be a empowering experience and is now treated like you're ordering coffee at the bar. It's ridiculous, Like it doesn't mean anything when it's the miracle of life itself.

    Angela Walker: 28:11

    It's almost like a factory, isn't it? I felt like they just wanted to get us in and out as quickly as possible and in fact we had trouble with breastfeeding initially because my daughter was tongue tied. And I kept saying can we get the tongue tied snipped? And they said just give her a bottle and then you can go home. And I said I'm not giving her a bottle because I don't want her to get bottle preference and then not be able to breastfeed. But they kept pushing have you ever bought a little? Then you can go home, because they couldn't let us go until until she was feeding. But I actually refused to do that. But I know a lot of women. They might not be so strong in their convictions and able to tell medical staff no, this is what I want, should we? What can we do, kim, so that women do feel empowered, so that they don't feel pushed around when they're giving birth?

    Kim Thomas, Birth Trauma Association: 29:10

    It's really hard, isn't it? Because you're so vulnerable at that point. You're so vulnerable doing labor and birth and you're so vulnerable afterwards, you know, especially if you've had a difficult birth and you might have a birth injury and your baby's crying so, so hard, to stand up to medical professionals in that situation. But I suppose that one thing I would say is it's really helpful to have Sunday Alice advocate for you. So if your partner's advocating you, that, advocating for you, and you've told them that they've got to advocate for you, that can be helpful. And of course it was one of the things that happened during COVID. Often the partner wasn't there and therefore they couldn't advocate and that was. That was quite traumatic for a lot of women. And I think the other thing is know your rights, because you have the right to say no, I don't want to bottle feed my baby. You have the right to say I want to try and breastfeed Because, as you said, they're very keen to get rid of you. Actually, quite often the women often in and out of hospital in the space of a few hours. You don't spend very long postnatal ward. These days, postnatal ward is sending me. The staff seem to be very busy and don't have time to give you much attention. So I think you know, to a large extent it is a question of just standing your ground if we can, and not being afraid to make it an instance of yourself. Is that, if that's what you want, if you want to breastfeed your baby, then either the perfect right to say you know, I'm going to try and do this. I want you to support me to do this.

    Angela Walker: 30:38

    Anjaliisa, at what point after giving birth to your baby did you realise that you were traumatised? Did you ever think, well, this is just what giving birth is like. Or was there a point where you thought I'm really suffering emotionally here, I need to get some help?

    Angelisa Nikolova: 31:00

    At first I went to a whole range of emotions. I was probably. It took me a couple of weeks to realise that there was something not okay. And it was okay not to be okay because I remember at first I was blaming myself not to do it better, not to be stronger, not to do all these sort of things, not to follow through with the plan that I had. After a few weeks I started to realise that I needed to do something, I needed to speak up, I needed to find a way. Other women like me. After months I kept having these anger. So I was like okay, we are still traumatised. Every time I speak about it I feel all those feelings coming back.

    Venelin Nikolov: 32:02

    You don't remember it straight away because in the given moment your mind blocks it in a way because it's so unpleasant. But then I remember her saying after months, couple of months oh, I remember this happened and I'm confirming yes, it was exactly like this. I was actually surprised sometimes that she did not remember some things and after two, three months just comes back to as a memory oh wait, this happened now I remember.

    Angela Walker: 32:44

    That's so true. I had the same myself, actually a long time after bits and pieces came back to me and I felt very traumatised when I became pregnant again and then I had to keep going through what my birth plan would be and every time I spoke to the midwives I was just sobbing and I couldn't stop crying and it all came flooding back because I must have been pushing back these emotions and I just couldn't talk about it. I had to have a caesarean with my second because of the complications anyway, but I just couldn't talk about it. And then the consultant midwife said to me that she would get the notes from my first birth and go through them with me. So I had a special appointment and she went through everything that happened step by step by step, and that really helped me to come to terms with what had happened. Is that common, kim, that people have these kind of flashbacks that Angelise has been talking about and the emotions that I felt that were years later and it all came flooding back in such a powerful way? I mean, I feel emotional even now talking about it actually.

    Kim Thomas, Birth Trauma Association: 34:03

    Yes, I can imagine this is something we hear such a lot is that there's an event that triggers that original trauma, and it's very often a subsequent pregnancy. So what you just described is such a typical scenario really. The woman thinks she's got through the trauma, she's worked through it, she feels okay, and then she gets pregnant again. It all comes flooding back and it's incredibly distressing. And there can be other things as well. For example, baby's birthday is quite often a trigger. So is that anniversary first or second birthday, or quite often much older birthdays as well. It just brings all those memories back. And then there are other triggers as well. I mean sometimes just kind of going into a room that reminds you of the delivery room, for example, just a certain smell that you remember. They can be really powerful triggers, and I think what's interesting is that sometimes it can be years later as well. We have women coming to us 20 or 30 years after they get birth and said I'm still getting flashbacks, which is kind of really scary to think that that happens to women. So trauma, I think, is one of those things that really really stays with you, and so you don't underestimate the power of that trauma, which is what makes me so angry when people say, oh, be thankful you've got a healthy baby, because actually it's one of these other healthy baby, but what about them? How she feels both with physical and mental injuries from what she's been through. You know you can't, or you should never underestimate that, because it can be really powerful and really long lasting.

    Angela Walker: 35:46

    It's interesting what you said, angelisa, about how you felt like you hadn't done it properly, and I really feel like I felt like I'd failed in giving birth. I'd done all this reading, I had my lavender spray, I'd been doing my hypno birthing, I was excited going into birth, I was excited when my contractions started and then it didn't go the way that I'd hoped or expected and I did feel really guilty about that actually, and I was like is that how you felt, do you think?

    Angelisa Nikolova: 36:23

    Yes, yes, the very first day that someone was feeling guilty, guilty, wrong, like yes, that was enough.

    Kim Thomas, Birth Trauma Association: 36:37

    It's so sad. Women beat themselves up about this and of course it's not their fault. You know it's never your fault. It's an interesting idea, you know, the idea of feeling guilty about something that actually you didn't have any control over. So you know, we all say you should never feel guilty about your birth. But of course it's one thing to say that and another thing to kind of be able to internalise that. It's so hard.

    Angela Walker: 37:01

    So how many people come to you, kim, how many people are traumatised by giving birth or by witnessing a birth? That's been tricky.

    Kim Thomas, Birth Trauma Association: 37:11

    Yes, it's interesting, isn't it? Because you mentioned those figures at the beginning. What research shows is that about four to five percent of women develop full blown PTSD after giving birth. They have all the symptoms for diagnosis of PTSD, which is equivalent to about 25 to 30,000 women a year in the UK. But then quite a lot of women have symptoms, trauma symptoms. They don't qualify them for PTSD diagnosis, but nonetheless making their lives really difficult. They might feel intense anxiety, for example, and not want to, you know, might not want to go outside with a baby or let NBLs hold the baby, or they might kind of have visions of something really terrible happening. I mean, that's really common. And then again, with partners the research suggests it's about one percent developed full blown PTSD. But then quite a lot rather dads and partners who feel traumatised and often don't talk about it because they feel guilty, because they think, well, I wasn't the one going through the trauma, therefore I shouldn't feel traumatised, and my job is to be strong and supportive. And that can be very difficult as well, because that's kind of that's a very lonely place to be if you're fighting to talk about it. And so, in terms of the numbers that come to us quite hard to say we are, but we have a Facebook group that's got 16,000 members now and they support each other. And then we have a lot, a lot of people coming to our peer supporters as well. We have a team of about 20 peer supporters. We answer emails and phone calls and we have we've found in the past three years, since COVID, we have more and more people coming to us for support.

    Angela Walker: 38:55

    Can it affect the way that a mother and baby bond, because you know you've been through this trauma and you've got this baby and you want. There's so many emotions Aren't there. This is tiny little baby you're trying to protect and but you're hurt and all this stuff's going on in your head. Does that something that can happen? Can it affect the way that the parents and the baby bond?

    Kim Thomas, Birth Trauma Association: 39:18

    Yes, quite often women say they look at the baby and they don't feel anything, for they don't expect to feel this rush of love. They don't actually feel anything at all and they, you know it's just, it's just some baby they've been landed with and that's. That's very difficult because if you're expecting to bond instantly the baby which is one of the things that everybody tells you you know you instantly fall in love with your baby and that doesn't happen. That you know. That answer to an already distressed experience. And quite a lot of women say you know that that continues quite a long time. They never have over several years, they don't have that kind of relationship with their child that they hope to have, which is enormously difficult really, because then they feel like a bad mother and they've done something wrong and you already feel bad because they had a difficult birth and sometimes, sometimes it just takes a long time. Quite often we find that eventually, you know, women do kind of develop a close bond with their baby, but it just takes a long time to do that. And I think the other thing is to say women often, so they often say desperately, want to be good mothers, that even though they don't feel that bond. They behave as if they have got that bond so they, they, they give the baby all the care and love they can, even if they're not instinctively feeling it. So I think it's really important to remember that you know you. Just because you haven't felt that bond doesn't mean you're not a bad. That doesn't mean that you're a bad mother.

    Angela Walker: 40:47

    Kim. What can be done about this? Well, I, think.

    Kim Thomas, Birth Trauma Association: 40:52

    I think there's two bits. That is something we can do to prevent it and is there something we can do to treat it?

    Angela Walker: 40:58

    Yes, go for it.

    Kim Thomas, Birth Trauma Association: 41:00

    So I think in terms of prevention there's a lot. I mean there's a huge amount that can be done. I mean one, I think is better anti-natal education, so that you kind of prepared for the things that might happen during birth and therefore you're prepared to make decisions, so that you're not kind of put on having to make a decision on the spur of the moment. So understanding the things like social disorder, dystocia might happen or force it might happen, and also understanding the risk factors for the things that might happen during birth. But obviously I think we really need an overhaul of our maternity system so that health professionals provide care that is much more women centred. So we really desperately need informed consent so that midwives aren't saying things like I'm just going to give you an internal examination now or I'm just going to book you in for an induction or whatever it is. You know we hear awful stories about women having membrane sweeps, for example, that consent or all sorts of things happening just being told right, we're going to give you an emergency zone or just going to use forceps or whatever. So there's this huge issue where we really really need to improve maternity care to with a focus on informed consent and also to focus on listening to women. So if a woman says I think something's gone wrong here, the health professionals don't say oh, you know, don't be silly. You don't know, this is your first time as a mum. You know you're supposed to be feeling pain and those kind of things aren't really helpful, and, again, much more to support partners as well so that they aren't left in the dark or not left in this sort of situation. You know you both described where you sort of start with a man is stuck standing there, doesn't know what's going on, and that's one part of it is kind of, you know, having a different approach to birth. But I think in terms of treatment afterwards, we really need to be identifying early on that somebody's had a traumatic birth and, as you said, you want somebody to say to you that was a really difficult birth. How do you feel? Are you coping? Okay, would you like some support? That should be a matter of course. I think I think up to. Oh, there is good news, which is that birth trauma can be treated. There are two really good treatments trauma focused CBT and EMDR stands for eye movement, desensitization and reprocessing. They're really kind of intensive talking therapies that last about eight to 12 sessions, but they are really good at treating trauma and people do tend to recover after a course of therapy. So it's a question of making sure that you get a referral for that and that health professionals understand that that is an option and that your GP will refer you if you need it.

    Angela Walker: 43:58

    That's good to hear, and I understand there's also an all party parliamentary group looking into birth trauma. Is that right?

    Kim Thomas, Birth Trauma Association: 44:06

    Yes, there is. I mean, this is fantastic development. I think there's an MP called Theo Clark who had her own very traumatic birth last year and she was very shocked by what happened to her. She had a third degree tear. She didn't really get the support she needed and she wanted to find out if it was happening to other women. And then, of course, she reached out. She talked to us, initially at the birth trauma association. We put her in touch with women who share their own experiences and so she set up this all party parliamentary group, which is wonderful. So we've now got a group of MPs who are focused on the issue of birth trauma, discussing birth trauma, raising it as an issue with the Prime Minister and with the government. She's also Theo's also done a survey over the summer with Mumsnet of Birth Trauma. She'd be writing the results for that shortly. So it's all really positive. You know, once I think MPs get interested in it and the government gets interested in it. You know we see some hope of change.

    Angela Walker: 45:10

    Thank you so much, Angelisa and Venelin, for talking to me today, because I've experienced a traumatic birth and talking about it can be very emotional, so I really appreciate you coming in discussing it with us and hopefully it will help more people who've had a traumatic birth that might be listening to seek the help that they need. And thank you so much, kim as well, for bringing your expertise to the programme. Thank you everyone. Thanks very much. Today I've been in conversation with Kim Thomas from the Birth Trauma Association, and Angelisa and Venelin Nikolov, who've shared with us their birth story. Thank you for joining us. I hope you've enjoyed the show. Please subscribe and review. It does make a difference and we'll be able to reach more people. And if there's a story you think I should be checking out, get in touch through my website, angelawalkerreportscom.

  • Angela Walker

    Host

    00:08

    British farmers say cheap imported meat and crops produced to lower welfare and environmental standards are undermining the industry. Some farmers are accusing supermarkets of misleading customers with their labelling. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guests today are fourth generation farmer Anna Longthorpe and Ben Givens from the National Farmers Union. Thanks for joining me, both of you. So we're going to be talking about food labelling, cheap imports and security. Ben, we'll come to you in a few minutes because you represent 55,000 farmers across the UK, so I'm interested in hearing your views. But first I'd like to find out about your background, anna. You're a pig farmer from Yorkshire and you're from a long line of farmers, aren't you?

    Farmer, Anna Longthorp

    Guest

    00:59

    Yeah, so we were originally arable farmers and then mum decided to add pigs to the mix some gosh over 30 years ago now, and I sort of follow there into the pig side of things. I've been sort of heavily involved with various campaigns over the years in the pig industry sort of under Dad's wing, shall we say. But then the most recent crisis I've sort of led from the front and really had my eyes opened on all the issues and the unfairness in the supply chain and just really misleading labelling and stuff which really doesn't give British farmers a chance to even fight their own cause really.

    01:44

    Yes, Tell us about your main concerns about British farming Well as you've just said, there's very misleading labelling going on and the imports are coming in Don't meet the same standards that are produced us environmental standards or welfare standards and it just puts us on such an unlevel playing field. And one of the tools in our boxes is to really push ourselves and encourage consumers to back us, but it's so difficult for them to do that when there's such misleading labelling going on. They shouldn't have to be detectives and having to read the fine print on the back of the pack to establish if a product is British or not.

    Angela Walker

    Host

    02:29

    Yeah, let's be a bit more specific. Tell me what is it that you've seen? Because you've been campaigning, you've been trying to raise the issue of labelling for a while now. What is it about labelling on meat packaging in supermarkets? That's really making you feel upset.

    Farmer, Anna Longthorp

    Guest

    02:47

    Well, there's a variety of things. I mean, for one, we've got these tertiary branding like Woodside Farms, rose Dean Farms. We've got packaging that looks, you know, blue, red, white packaging. We've got some products that have actually got a union jack on, even if the product's only sort of packed here. There's a certain sugar brand, for example, that has a union jack on it and the sugar canes imported, whereas we have another sugar brand that is all British sugar and we should. You know, it's really difficult for consumers to establish how to back the British farmers when it's such misleading labelling going on.

    Angela Walker

    Host

    03:32

    I did contact the competitions and markets authority and they referred me to DEFRA, and DEFRA said food labels must not be misleading and that people can contact trading standards about individual cases. Do you think it's the case that you know? It's the odd one or two items slipping through the net that are being displayed, you know, under a British banner, or do you think there's something more to it than that?

    Farmer, Anna Longthorp

    Guest

    03:59

    I think there's a lot more to it. When you look at in the major supermarkets not all of them, but certainly the biggest two players they'll have, you know, big signage above the shelves saying back in British farmers. There's one that says best of British on a gondola rend, then everything underneath it is literally imported fruit and veg. So, yeah, I think it's as I understand it's well, most of the time it's cheaper to import, because when we've got to ask ourselves why are these imports cheaper, we know that customers do want to back British farmers. We've been outside retailers and we've been speaking to consumers. They've said they want to back British. We've told them what to look for and they'll go inside and they'll really, yeah, really look at the packaging carefully and then come outside and say, well, there's no British in there. So, and yeah, the retailers know that consumers want to back British, so they're mislead, they're making things look British and, yeah, buying them.

    Angela Walker

    Host

    05:06

    You think it's a deliberate policy? That's a deliberate policy? You think I think so. Yeah, purely for profit margin. Asda I contacted Tesco and Asda. I've contacted both of them supermarkets twice. Asda came back to me and said all Asda products are clearly labeled and they asked me to send them examples, which I did, but they've not responded to that so far. Ben, is this something that you've heard from other farmers or is this? You know, that has been a bit overly sensitive. What do you think?

    Ben Gibbons NFU

    Guest

    05:42

    I would never say that farmers are overly sensitive when we're in an extremely competitive market and it's extremely frustrating to see a lot of imported products on the shelves. But you know, from our point of view we always call for food labeling to be clear, simple, accurate and including the country of origin. That is really what we're asking for here. You know, we always think and we know that the British public want British food and they've got the confidence that it's traceable, that it's produced to a higher welfare standard. I mean to go slightly back from the labeling. You know, and as touched on it there, we are getting a lot of food that's imported. I think we're 60% self-sufficient at the moment. That can change to whatever sector you're in. But we have seen a growing push from government to do further trade deals which we potentially haven't done in the past, and that creates a whole sort of minefield there.

    Angela Walker

    Host

    06:45

    You're talking about trade deals with other countries who don't have the high welfare standards that we have. Is that right?

    Ben Gibbons NFU

    Guest

    06:53

    Yeah, I think it's important to touch on as well that countries have got different standards. You know we can't always say that they're significantly lower, but there is a differing in standard which ultimately produces a different cost of production. You know we have always called on from the NFU that the government should, when they're entering these trade deals, come with a set of core production standards and that often gets very confused with food safety standards. Food safety is something that the government have widely accepted shouldn't be undermined, but it's very different to production standards and ultimately, if things are different, production standards and the cost to produce is going to be very different.

    Angela Walker

    Host

    07:38

    You're nodding there, Anna. Tell us about the high standards that you rear your pigs to and how you feel that could be undermined by, you know, cheap imports.

    Farmer, Anna Longthorp

    Guest

    07:47

    Well, I was sort of nodding along there because I had this conversation with Mark Spencer at the Great Yorkshire Show. Actually, and as I understand it, under WTO rules you can't dis, you can't base trade deals on welfare, that can't come into it. So you can't discriminate against a you know product from a different country based on welfare standards. That's yeah. That was my understanding of the conversation.

    Angela Walker

    Host

    08:15

    So what would you like to see? Maybe labelling that indicates the standards that each countries adhere to? Or how could we make it so that people know what they're buying? What do you want to see on the packaging?

    Farmer, Anna Longthorp

    Guest

    08:28

    I just want clear country of origin labelling. I mean, I wouldn't. It was spoken about about having different sort of welfare standard labelling and stuff which I don't. It would be too messy and I think it's. Some people try and make it a bit too black and white here as well, in the indoors bad, outdoors good, and it's just not that simple. We've got we're very lucky here to have so many different production systems and you know, whereas on the continent the most of your pork will be produced indoors, you know some countries don't have any outdoor pigs whatsoever and we've always said over here the consumer is incredibly lucky to have so many different production systems, all high welfare.

    Angela Walker

    Host

    09:16

    But we do have, you know. We do know if we're buying free range chicken, don't we? So wouldn't people want to know if they're buying? You know outdoor reared pigs as well, do you think?

    Farmer, Anna Longthorp

    Guest

    09:29

    Again, it's quite I mean consumers it's quite difficult for them to understand the different production systems. We've got free range, we've got outdoor reared, we've got outdoor breads, we've got indoors, we've got different levels within those. So and you just can't be that black and white, that, like I say, you can't say outdoors good, indoors bad, because it's not that simple. I mean we were free range pig farmers but we've recently, because of various disease challenges, we've had to take some pigs inside and you know that's better for the animals welfare, because we don't want to send more pigs to an outdoor site that's got disease. Who would better off suddenly?

    Angela Walker

    Host

    10:06

    get indoors. So I know when we've had avian flu, the you know, the chicken farmers have to bring the chickens indoors but then they're not allowed to sell their eggs as free range. Then are they? But of course it's a welfare issue to protect the flock. So I guess that's the same when we're talking about disease. Before Brexit, I covered the issue of food security many times and some farmers told me exactly this that they were concerned about imported produce not meeting the same high standards as homegrown Ben, what is the situation like now? Is that a fear that's come into fruition?

    Ben Gibbons NFU

    Guest

    10:45

    I think it's something that we're going to have to continue fears on. Ultimately, I think if we look at what's being done with some of the trade deals or the trade policy, I think we're going to see more meat potentially coming into the country. We've done a deal with Australia and New Zealand. We're in the new Asian Pacific trade bloc. Now we're looking to do trade deals with India, canada, us. It would be hard for me to dispute and suddenly say I don't think we're going to see imported food. We're probably going to see a variety of what's coming through, which is what's going to be different. That's where we still push through and we would ask government for these core standards.

    11:31

    I know that Mark Spencer might be saying to Manit that it's not possible. We're looking to do trade deals with countries that want to trade with us. Australia and New Zealand, as a prime example, are primarily selling as products that we're actually very good at producing in this country. They wanted access to 60 million consumers. We could have gone in there and said this is the line, this is the standard that you've got to meet. It would almost lift their standards up to ours and we could be on a level playing field If we can do it with things that we outline as food safety. We've said we're not going to have chlorinated chicken and hormone-pumped beef. If we can implement those standards as safety standards that countries have to deliver to, I can't see, if you can't see, why we couldn't put through a core set of standards as well. That would make it much fairer for our own domestic production.

    Angela Walker

    Host

    12:30

    I know a few years ago an arable farmer was telling me how frustrating it was because he wasn't allowed to use certain pesticides and yet overseas they were. Those grains were being imported or used in products which were then imported into this country and there's, like it's not a level playing field. But if these deals have already been struck, then what can be done to help British farmers now?

    Ben Gibbons NFU

    Guest

    13:01

    You're right, it's very hard to undo what's being signed already. What we're pushing for is a change in trade policy and something that's much more pragmatic, something that keeps an eye and understands our sensitive sectors, particularly when we're looking at lifestyle, we're looking at meat production, we're looking at sugar production very sensitive sectors where we do have high standards and high cost of production can be undermined very easily by that, and the trade policy just needs to have a much greater understanding of that, because if the competition means that we can't compete on the shelves for our product, then that production is going to start to fall and it's very hard to turn it back on.

    Angela Walker

    Host

    13:46

    And what do you have to say about that?

    Farmer, Anna Longthorp

    Guest

    13:48

    If we can get consumers to buy British, that creates more of a demand for British product. That encourages British farmers to produce the products. And we keep hearing food security, food security banded around, but that is one way that we could really encourage British farmers. There's a really low mood in the industry at the moment. It's not just pigs, it's throughout farming, and I've never known it this way that we're feeling really undervalued. Food is just so undervalued and it's making more financial sense to plant trees and put solar panels up on your farm than grow food. And we've always been very passionate about what we do. But it's getting to the point now. Where do you draw the line and just say you've got to use your head here rather than your heart? If it's not paying, it's not paying. And if all of us decided to go that way, then we really are in trouble with our food security.

    Angela Walker

    Host

    14:49

    Where do you see British farming in, like you know, five, ten years, if things don't change?

    Farmer, Anna Longthorp

    Guest

    14:58

    It's a difficult one. There'll be some. Yeah, I mean I'd like to think I've got a different supply chain anyway. I've got a very niche supply chain and I supply direct, so I'm a little bit more secure in what we do. But even that, with smaller avaspares and stuff falling away, the infrastructure to support smaller businesses is falling away. With the pig supply chain, with what's gone on over the last couple of years as well, that's gone very integrated. You've got lost a lot of independent producers and it doesn't seem like the retailers really care where the produce comes from and they don't seem to be looking long term about that either. As long as they can get something on the shelves, whether it's British or imported, I don't think they really care. It's whatever makes the biggest margin short term for shareholders. So unless we start thinking long term and I don't think the government's particularly good at that, are they Then I think we're in trouble.

    Angela Walker

    Host

    15:59

    Ben, you said people do want to buy British. What do you have to support that?

    Ben Gibbons NFU

    Guest

    16:06

    I mean, we're always looking out for key logos and we've spoken before about some of the misleading in labelling. But some of the key logos looking for that origin label as well, looking for red tractor if it's appropriate and that's a certain product those are the key labels for the British consumer to support. I think it's important to look at the broader food security context as well. The NFU had a food summit with number 10 earlier in the year to discuss the crises really that we're in and you can see from our recent surveys, confidence in agricultural production is extremely low and they need something effectively to outline to create that sort of future and have a long-term plan, which we've always lacked recently.

    16:57

    What we're calling for is our food security or self-sufficiency to be monitored, for there to be a report, an annual report that's effectively looking at what we're producing and if we're creating policies like trade or potentially on the environment side as well, but if we're just looking at trade here that are actually reducing our production levels, there needs to be a reaction to that. We can't react after 20, 30 years of being in the trade deal. We need to be monitoring these as we're signing them and the impact it's having on our domestic production and it can't be undermined. We're starting to get government talk more proactively about supporting farmers and supporting the food security. We need to see action now and some of it is on that line and to try and pivot some of our policy and look more at domestic production.

    Angela Walker

    Host

    17:44

    I know some of these trade deals are allowing, for example, new Zealand, I believe an in to the market now and that's going to allow them to import or export to the UK more and more meet in future. Is that right? That's how the trade deal is working. It's opening up our market more in the future.

    Ben Gibbons NFU

    Guest

    18:08

    Yeah, it's tailored to full liberalisation over a certain amount of years and the quota will increase year on year. We always have had or the EU have. When we inherited, it was a trade deal with New Zealand for very low levels of things like lamb, and so that's what we've always had. We've actually had lamb for a very long time on our shelves. The concern is, of course, if we're leading to the end of time frame where it's full liberalisation, then we start to have unexpected amounts on the shelves, which can often cause some issues with the market as well.

    Angela Walker

    Host

    18:47

    So it's opening us up even more in the future, from the sounds of it. Now let me just read out this from Deffra. This is about labelling. It says food labelling rules are set out in existing food information regulations. They require a food label on pre-packed food to must show the name of the food, ingredients, the quantity, allergens, best before date and nutrition and the origin. So it's already got the origin on there. Anna, what do you want to see it to be more prominent? Is it about the actual labelling or is it? I mean, you sent me some pictures, didn't you? And they were like so you know, two packets of pork chops. And it was really difficult, unless you examined it very closely, which shoppers don't do when they're in a hurry and they're just chucking stuff in the trolley trying to get in and out. It is. It is hard to see sometimes which country that meat is from. But how could it be enforced? How could companies be made to make it clear up that? You know they already have to put the origin on there.

    Farmer, Anna Longthorp

    Guest

    20:09

    It's a difficult one. I mean they could do something just well. I mean, there's obviously the red tractor, but that, yeah, that is if you're shopping in a supermarket. You know, if you're shopping in a butcher's shop, then you're buying loose meat. So it's a really difficult one and it's it's quite upsetting that we we're clearly, we're clearly just completely lost integrity when there's such misleading labelling going on. I don't see why it can't just be clear just with a union jack or something. If it's produced in the UK, would you like to see it.

    Angela Walker

    Host

    20:45

    You know the the country of origin, written in a certain size, or something like that.

    Farmer, Anna Longthorp

    Guest

    20:49

    Possibly on on the front of pack, yeah, in a certain size font, maybe in bold, I mean with. You've mentioned the allergens there, ingredients, I mean we've. I have a right going on with labelling. In my personal business, you know, I've trade trading standards. Come around and if the ingredients aren't in the correct order, you know, if one one ingredients in front of the other one, it should be the other way around. Then they come down and they make me change my labelling.

    21:17

    So, yeah, maybe we just have a country, you know, country of origin, involved on the front of the pack. No misleading going on. No, you know. No, you know, if there's a load of imports in a supermarket, let's not have big branding on the top of the shelf saying supporting British growers, if it's, you know, underneath, just just some sets of standards, possibly for for retail, designed to not mislead consumers, just basically to do as you say on the tin. I mean, that's what I set my whole business on is doing as I say on the tin, and I feel like I'm, yeah, shoot myself in the foot half of the time because the people that aren't doing as they say on the tin are thriving. It just makes you question what is the point in being truthful and and having integrity.

    Angela Walker

    Host

    22:12

    You sound so despondent, anna, and you know it's telling me that the whole industry other farmers are really feeling demoralised at the moment, and you know where do we go from here.

    Farmer, Anna Longthorp

    Guest

    22:27

    Well, yeah, they are. I mean FCN, the Farm and Community Network charity. They actually run a survey and one of the main contributing factors to poor mental health in British farmers is seeing, you know, shelves flooded with imports and, yeah, just getting some integrity into into those big retailers and yeah, so I'm not saying not, you know, putting them all in under the same bracket. We've got a few that you know are very supportive and, you know, do pay farmers fairly and you know they've got really good supply chains going on, they've got good communications and they do say they do as they say on the tin.

    23:09

    But then we've got, like I say, the the main two players, two or three that are incredibly misleading and, like I say, all we want is it is to make it easy for a consumer to instantly see a packet, know that it's British, stick it in the trolley. They feel good about themselves at the back in British. But at the moment, like I say, we're happy to really push ourselves. That's one of the biggest tools that we've got is to encourage consumers to to back British farmers. But it's got to be easy for the consumer to do that Do you want to come in there, ben?

    Angela Walker

    Host

    23:46

    what do you think? I mean, we've talked about, you know, farmers feeling demoralised. I mean, it sounds like a bit of an uphill struggle. They're trying to, you know, sell their produce and they're coming up against cheap imports that aren't clearly labelled as imports. And you know the shoppers want an easy life, don't they? I mean what? What do you think about those two aspects the the way that farmers feel that that it's not a level playing field, and the labelling?

    Ben Gibbons NFU

    Guest

    24:18

    Well, I mean, we always say that the labelling needs to be clear and simple, and I think that's always what we're asking, you know, and it has that clear count of origin which I know sort of outlined there. But you're right, the confidence is is very low at the moment and it does, you know, when they're seeing more and more trade deals done, you know, it does start to undermine them. The confidence again is taking a hit then, which is why we're always pushing for this, for the trade policy, that that understands the sensitive sectors. And while I know that we've discussed a lot on the on the labelling, the concern is, of course, that a lot of these trade deals we've started doing sets of precedent to do more and more and, if anything, some of the problem on the shelves could actually increase as we start to have all sorts of different products from different origins on.

    25:10

    I mean, we're always trying to promote British product. The consumer wants British product. It's just getting it embedded into government to to supporters, and some of it is on the food security which I outlined before. Some of it is always also, as well, taking an interest in what's happening on retail level. We've always been calling for fairness in the supply chain. There's a real concern, particularly in pigs which we've seen beforehand and eggs to a degree as well, where we have this sort of boom to bust level, when production and supply is very, very strong and then price crashes and you can't turn off and I will tell you that you can't turn off and you're then producing, if you're not careful, to below the cost of production.

    Angela Walker

    Host

    25:59

    Tell me about that, anna. Tell me about this. The difficulties with the supply chain. Why is it so complicated and what's going on.

    Farmer, Anna Longthorp

    Guest

    26:09

    Well, it's always been a very unfair supply chain with the farmer taking all of the risk Retail. So you've got three different levels. You've got retailer at the top, processor in the middle, farmer at the bottom, retailer holds holds the hammer. Basically, I sometimes liken it to a bit of a drugs gang that the guy at the top is pulling all the strings, getting the processor in the middle to do the dirty work and dictate to the farmer what they're going to be paid, how many pigs are going to take. You know farmers in the process have contracts, but so 18 months, two years ago, those contracts were just basically ripped up and contracted number of pigs weren't taken by the processes, and that that was at the same time when you saw all these these supermarket shelves flooded with with imports. It was said that because of Brexit, we didn't have enough butchers and processes to butchering, slaughter the pigs. But actually, when you look at what was on the shelves, all the photos that I sent to you was pork that had been butchered here. So clearly we had capacity to butcher it.

    27:29

    It just actually happened at the time that imports were cheaper, so we were leaving British pigs on farms, and some. You know we had contingency plans. We always have to have to have contingency plans as a farmer. Processes don't have to have contingency plans, retailers don't have to have contingency plans when it comes to animal welfare. So, basically, room ran out on the farm. As Ben said, we can't switch off the tap. We've got new, new pigs being born all the time. We've got to keep those pigs moving off farm, otherwise you just end up in a bottleneck.

    28:03

    And that's what happened. And, yeah, some farmers ended up culling and wasting healthy pigs, which is why, yeah, there's now a deferrer of you going on trying to sort of balance up the supply chain. But, like I said, that just demonstrates perfectly how the farmer takes all of the risk. But actually, during that time, one of the things that farmers really tried to do, we actually kicked off a campaign biting to British, encouraging consumers to back British farms, make sure they're buying British pork. But then you know we want to do something really positive because we're at risk of commercial retaliation if we expose what's going on publicly, and you know we did.

    28:52

    Some farmers were threatened. Some farmers were told their pigs wouldn't be taken because they'd been too gobbly. So, yeah, our positive way of trying to get through that was to encourage consumers to buy in to British, but they couldn't do it because of such dodgy labeling and, as the photo is that I showed you, you know, shells flooded with imports. The odd pack of, you know, the odd pack of British, but very difficult when it's all packaged exactly the same with the odd UK, but then everything else German, netherlands, whatever.

    Angela Walker

    Host

    29:29

    Yeah, they all do seem. Even though it says on the packaging you know it's German or whatever they, those products do appear to be mixed in with the British ones. So I see where you're coming from there, that's for sure. And, anna, so you're like fourth generation farmer. You know what feedback have you had from your family and what have you seen through the years when it comes to changes in farming?

    Farmer, Anna Longthorp

    Guest

    30:03

    Oh gosh, it's a difficult one because, I've said this latest crisis it's. This is the first one that I've really felt, to be honest, because, like I said before, I was always sort of under my dad's wing, so I might have been holding a placard, but I didn't understand the financials and you know the nitty gritty, whereas this time I felt everything. You know, we like, said we had a niche supply, we have a niche supply chain, but because where I buy my weaners from, they were let down on their contract, so I ended up with loads of extra pigs on farm as well. So, you know, we, I felt it all. I, you know, did everything within my power. You know, worked 24 seven, like all the other pig farmers did out there, creating extra space on farm and, yeah, it was a really tough time.

    30:54

    But as farmers, you dig in and you do whatever you can and you, you know, you look after your animals to the best of your ability and you, you know, you put everything in and we were fortunate to get through it without Hans Cullany Cullany pigs. But it haunts me in the knowledge that some of my colleagues had to do that and I know that that will stay with them forever. So I don't know what the silver bullet is and I've been looking for it for two years. But yeah, as I keep coming back to, it's not just farming actually now we're just really lacking basic integrity in government and supply chains, you know, in not just food supply chains, in all supply chains, from what I can see, and I don't know how you legislate for that.

    Angela Walker

    Host

    31:51

    Do you think it's to do with? You know people buying from massive supermarkets and they're not buying from you? Know smaller butchers? Because surely if you were selling directly to a butcher and I was buying directly from a butcher, then you've got a much smaller supply chain and you'll get a fairer deal, and I know what I'm buying. Is it just because everything's like mass produced now?

    Farmer, Anna Longthorp

    Guest

    32:17

    Yeah, like I said before, you find the infrastructure for smaller businesses sort of falling away, the small abattoirs, the logistical network. You know, I've looked at other, you know, putting my pigs into other abattoirs, but they want, you know, you'd have to have a certain type of lorry with a certain type of rail system to pick it up and it's. You know, I'm finding myself just having to do more and more, you know, on the ground stuff, rather than running the business, shall we say, I'm just having to run myself ragged just to keep the wheels turning and firefighting a bit, and I don't know, you know it's a bit of a COVID hangover, I suppose. And the pig crisis, and you know the, you know the flux that's been going on over the last few years. But yeah, from what I can see, big, yeah, big businesses really taking hold and capitalism isn't working in my eyes. But yeah, I don't know where we go.

    Angela Walker

    Host

    33:23

    What do you think then? How can we encourage people to buy British?

    Ben Gibbons NFU

    Guest

    33:29

    Well, I think it's. It's important to point out as well that the majority of people will buy, obviously, from a major retailer and actually the majority will buy on price as well. Particularly at this point where we've got the cost of living crisis, it's so important that we're in the market and that anyone in the UK has access to British food which is sustainable, climate friendly food and they're available to afford on a budget as well. Like I said, the whole discussion is on cheaper imports. There's a lot of pressure from the supermarket to bring in cheap food at the moment, but we could consider it as a short-term gain for a long-term pain, because ultimately, if that's displacing British products, then we could take it and see a big hit on the farm, where production levels drop down and we could see less British product on the shelves, because we can't always rely on some of those imports, as we've seen throughout this year. We've seen a fall-off in peppers and tomatoes salad products. They suddenly disappeared from the shelves. We saw eggs disappear from the shelves for a little bit and then suddenly Italian eggs come in. So we've had these tangible examples of what happens when we suddenly see a big, almost like a surge in imports and then relying on them. It's hard to rely on them entirely because you will start to see these gaps.

    34:57

    We've got our back British farming day on the 13th of September. That's big promotion, a lot to government as well, to re-stand up, to fight for their farmers, to stand up and get these policies right, to give the industry some confidence to continue producing. I think we have seen a shift. It's taken a lot of pushing from farmers, from ourselves in a few from other bodies, to continually push, as we always have to get food security fire higher up the ladder. This is where our government can be pretty bold and positive and legislate and say look, we're going to support our climate-friendly, sustainable farmers and we're going to lead the way in animal welfare and environmental standards, which we have. But the balance is, if we continue to push these standards up and increase our liberalisation on trade policy, we could end up pricing ourselves out of the market. So it's a real sort of balance.

    Angela Walker

    Host

    36:00

    You guys, the NFU, has been talking to the government. What does the government say? I mean, why are they pushing ahead, making trade deals with other countries to import stuff which is basically undercutting our own farmers? That is essentially what's happening and, as you say, short-termism, isn't it? Because if it puts British farmers out of business, they won't be there anymore, and then we'll be over a barrel forced to import food which is being made to produce to lower standards and at the same time, we keep hearing about carbon offsetting and green credentials. I mean, it's like we're being told one thing but then, in effect, we're seeing another.

    Ben Gibbons NFU

    Guest

    36:47

    I think it's important to highlight that we've had quite a few changes in government in the last short time and it's been very different for each of them. To be honest, I think this last government that we've got, with Rishis Unak in number 10, we have seen a noticeable shift in understanding the food security issues. Unfortunately, a lot of it has also come from the war in Ukraine, which is highlighting these concerns as well in a major way. You can see these tangible examples in front of us. We have seen that shift. We have seen a trade policy that is reflecting a bit more on some of our sensitive sectors.

    Angela Walker

    Host

    37:33

    So when you say we've seen a shift, in which direction though?

    Ben Gibbons NFU

    Guest

    37:37

    Well, I think it's important to recognise that we're going to see these trade deals happen. This was a promise from Brexit. Whichever way you voted, a lot of what they were pushing and what they were saying was there would be more trade deals. What we've seen recently, and much more engagement, is the speed of which some of these trade deals are signed, as potentially looking like it's rowing back a little bit. There's a bit more assessments, there's a bit more making sure that the eyes are dotted at T's across, just understanding these sensitive sectors. The speed that we saw Australia and New Zealand be signed, with basically no consultation, no assessment, very little input, was fairly phenomenal and actually since then we have seen a shift, but we've been heavily pushing.

    38:33

    If we know that these trade deals are going to be signed, we need to start exporting some of our products. We have premium products. Some of the markets that they're going to start opening up will have opportunities for export. We need that help. We need that support to actually brand Britain and be proud of it and export the overseas, because we cannot reduce our production here and if we're going to have some more imports in, we need to make sure there's an avenue for that market.

    Angela Walker

    Host

    39:02

    What do you think about that, anna? Would you be prepared to export your quality products, because if you're being undercut here by cheap, inferior meat coming in, is that the answer? Would you be happy to export more to kind of make up that difference?

    Farmer, Anna Longthorp

    Guest

    39:23

    Personally. No, that's just my product. I've been there, done that in the paperwork, it's just not my concern.

    Angela Walker

    Host

    39:34

    Is that a Brexit thing as well? The paperwork to export is that a stumbling block?

    Farmer, Anna Longthorp

    Guest

    39:39

    Actually, no, I just don't like paperwork. I've exported to Dubai and actually, because there's no domestic pighead there, it wasn't as onerous. I think it would be harder to export to the EU than it is to Dubai, but yeah, it's hard enough me getting my product to customers in the UK, and you mentioned the environment there and we're not self-sufficient in pork here anyway. So to me it doesn't make sense to export pork. When we're looking at the environment. Let's keep it local and keep the food miles down, for goodness sake.

    Angela Walker

    Host

    40:20

    Yeah, that's a good point. I think the thing that strikes me, ben, is that we are producing a lot of great meat, a lot of great produce in this country, but the fact is that how can these farmers compete when the equivalent that comes in is cheaper because it's been produced to a lower standard? Therefore, surely consumers have a right, at a glance, to understand that what they're buying are not comparable products?

    Ben Gibbons NFU

    Guest

    40:55

    Oh, absolutely, and that's why it harts back to that core standard push. That's why it has to be there. We can't be bringing in products that are illegal to produce here. It's pretty much as simple as that, isn't it? It has to be a level playing field and I think we feel the legislation should be on that side to help the consumer. That would help the consumer on then adding a ton more labeling on products. I think there's always a concern of adding more and more. We want to keep it simple, but if the legislation and the frameworks there to not bring in products which should be illegal to produce here makes it so much simpler on a shelf for the consumer who's rushing, not necessarily reading the whole product they're buying on price, a lot of the time the legislation is there focusing on our core standards and saying if you want to trade with us, if you want to bring your product in has to meet the same level.

    41:51

    And then actually we could take that into a whole new positive and say actually Britain is proud of its high welfare, high environmental product and it's actually lifting the standards elsewhere. We could have gone at this a completely different way.

    Angela Walker

    Host

    42:07

    It's actually hard to believe, really, that you can buy meat in this country which has been produced to a standard which would be illegal here. I just don't think. Do you think that consumers Realize that's going on, anna?

    Farmer, Anna Longthorp

    Guest

    42:27

    I think more and more people are engaged. Now what I think we've got is a sketch generation where, say my oh gosh, my grandparents you know they, you know probably had a couple of pigs in the backyard and you know they totally understood the whole food supply chain. You know how our product is produced and you know it has to be slaughtered and X, y and Z. And then we've had farm visits and then done butchery demos in schools. Just, you know, to show, you know this is our high welfare pigs. This is the whole process. And when we've gone in, you know all of the farm, but kids and teachers, when we've gone in to do the butchery demo, taken half a pig into the school. The kids have absolutely loved it, want, wanted to know everything, how the pigs slaughtered, want to know the Internet's of everything. It's the teachers that are. They're wincing in the corner, not wanting to link the two.

    43:23

    So I do think we've got a sketch generation of of some consumers who just see milk on a shelf, meat on a shelf in.

    43:32

    You know that it comes from the supermarket, that's where food comes from, and even when I first started back in the day at farmers markets, I used to have my meat in the counter, a video of my pigs running around in the field, and I'd have, yeah, sort of the middle age. Well, back then, when I was younger, I think I'm that middle age, middle age then coming up to me saying, oh my God, does ham come from a pig? And then other other kidding no other people coming up saying, oh, you're sick, you are, but then carrying a bag full of Danish bacon, that's, you know, produced to inferior welfare standards. And I'm like, if you care about animal welfare, then you've got to think about where your food comes from, because if you don't, you'd be unknowingly supporting lower welfare standards. And there's a nation of animal lovers, you know, we want to, we want to support higher welfare standards. So that's why we need clear labeling, we need British products on British shelves.

    Angela Walker

    Host

    44:36

    Thanks very much, anna, and thanks for joining me, ben.

    Ben Gibbons NFU

    Guest

    44:40

    Thanks very much.

    Angela Walker

    Host

    44:41

    I'm journalist Angela Walker, and today I've been in conversation with Farmer Anna Longthorpe and Ben Gibbons from the NFU. I hope you've enjoyed the show. Please do review the show and subscribe, because it makes it easier for other people to find it and if there's a story you think I should be investigating, get in touch through my website. Till next time, take care.

  • Angela Walker

    Host

    00:04

    Childless men are disenfranchised and overlooked by society. That's according to my guest today. The UK has an ageing population. In future, there will be more older people and a higher proportion of them will be childless. Many of them would have liked to have had children, but circumstances or infertility have left them without. I'm journalist Angela Walker, and in this podcast I talk to inspirational people and discuss under-reported issues. My guest today is Dr Robin Hadley, academic and author of the book how is a man Supposed to be a man? Thanks for joining me, robin.

    Dr Robin Hadley

    Host

    00:43

    Thanks for inviting me on. I'm looking forward to having this really good chat with you.

    Angela Walker

    Host

    00:48

    No problem. Yeah, I wanted to talk to you today because I came across some of your work on the internet and I thought it was fascinating, because male childlessness is just not really something that we talk about very often. I mean, I can't remember ever reading or hearing much about it, so how is it that you first started researching male childlessness?

    Dr Robin Hadley

    Host

    01:12

    For one thing, men are fascinating and one of the things about they're so fascinating is there's so little round about their own experience and how they feel. How I came to research them, I was training as a counsellor and took the MA option because as counselling, you have to do something you experienced and I was really broody in my 30s when all my friends and colleagues were producing babies and I wasn't. And I was terribly jealous particularly a one colleague who was very close to when he became a dad, and I couldn't verbalise that. The only thing I could do was really avoid him, which I did successfully for a while. And so when I was looking for a subject for my MA dissertation, I said that I was really broody my 30s and my supervisor said you know, I've never heard anything about it, do that.

    02:10

    From that I realised there was nothing around the male experience about wanting to become a parent, to become a dad, and I wondered why that was. Because there's quite a lot around women and feminism and feminist scholars do an awful lot around that, but on the opposite side or adjacent to it is very little around men, and part of the reason for me looking into it was was I the only one who felt so broody, so broody I couldn't really speak about it. But part of that is that there's no narratives for me to occupy as a man around being broody and wanting to be a dad, sort of out there in an intimate relationship, I think men talk where it's very safe, but not really out down the pub or at work or anything like that. So that's why I became really interested in men and the desire for fatherhood.

    Angela Walker

    Host

    03:12

    Why don't we talk about it? Why don't men talk about their desire to become a dad and that they feel like they're missing the boat? Is it to do with a social stigma? Is it a cultural issue? What do you think?

    Dr Robin Hadley

    Host

    03:26

    I think it is cultural, very much cultural and social. Men are, boys, are socialised to be sort of outside themselves, do activities and not to feel that sort of stand down. I don't think it's quite as bad as it was, but again, it depends on your social, cultural environment. But it's still there and the lying level and so if you're sort of brought up in condition not to verbalise your feelings but to do actions instead, then it's very difficult to talk about it and men are sort of socialised not to be vulnerable and if I'm saying no, I really want to be a dad, I want to be nurturing and caring. That's not a discourse, a narrative that's really appreciated in Western societies. Particularly Marcia Inhorn is just done a book called Motherhoon on Ice, and she points out to Middle Eastern countries where the family unit is very strong and there's a very much strong narrative around men being fathers and being caring, involved fathers, and so the Western narrative is just catching up on, just on that little bit.

    Angela Walker

    Host

    04:45

    Do you think we still have this thing where men are expected to be macho and that we kind of talk about? When we talk about spinsters, we think about women who weren't able to have children, but when we talk about bachelors, that has different connotations, doesn't it? You think about bachelor pads and men being free and single and happily doing their own thing and being one of the boys. And I've been thinking about this a lot lately and it's just such a weird divide that we have that we assume that a woman who hasn't had children wanted them but didn't have the chance, but there's more of an assumption that a man might have chosen not to. Do you think that's a fair assessment?

    Dr Robin Hadley

    Host

    05:33

    It is a fair assessment. And the other thing in there is the myth that men are fertile from puberty till death, fully fertile and they can father a child at any time, whereas women are dictated by the biological clock and the social clock. We're all dictated by a social clock. All societies have a preferred time period when you're supposed to be a parent? Too early, that's not too good. Too late, that's not too good either, although that bit's changing a bit with IBF coming through. So that myth around men being fully fertile disenfranchises men from it. Because you're pushed away, Well, you can have a kid at any time.

    06:13

    The other part of the myth, social narrative myth, is men aren't bothered, but men are bothered. So what is it about society that wants to focus on women and nurturing and put women in that nurturing motherhood box? Or is it because a men aren't supposed to be vulnerable so it's easier then to say oh well, you're always fertile and sperm declines in efficiency from around about 35 years of age. So if you want to become a sperm donor, most clinics won't upset men older than 35, sometimes even older than 30, because of that decline in sperm efficacy. The older father thing you'll often get Rod Stewart, Charlie Chaplin, Robert De Niro, I think just recently has become an older father.

    07:10

    But these are quite elites of men and for the average chap becoming a father at 70 or 60 would be quite unusual and, depending on the social, cultural environment, probably not greeted with the same acceptance or joy around it.

    Angela Walker

    Host

    07:37

    And is it interesting what you said about women? Because I got married in my 30s and from the moment I got married, people kept saying oh the clock's ticking, angie, if you want kids, you better get your skates on. And I think, yeah, there is that assumption that men will be fertile for longer. So, and I found that really uncomfortable because nobody knows what's going on in your life. If you've decided that you want to wait to have children, or if you've got fertility issues, obviously it's nobody's business, but people do still ask and, of course, conversely, there are plenty of women who don't want children, but then they face this constant kind of questioning about when, when they're going to do that. And so what's it like for men who would like children but for you know, circumstances or even infertility haven't been able to? What's it like? You mentioned earlier that you found it really hard amongst your colleagues. Just just tell us the effect it had on your life, robin.

    Dr Robin Hadley

    Host

    08:55

    Circumstances are really important word here in why people don't fulfill their fertility ambitions Big circumstances, economics and changing economics. People want to do that macho thing of being secure, a roof over the head, food coming in, that sort of thing. So quite often they suspend their fertility ideals because of that. And one thing about student loans in America and probably come through here is that's going to be an issue for them. But as a man I speak for myself, can't speak for all men. But hard to go. I expected to be a dad. My parents said sort of I know when I was 12 or something there was an argument and said they refused me something. And they said well, when you're a parent, you're going to have to make these tough decisions as well. And that's I think all the men I've spoken to have said the same thing. There was this arc of life. You know I was going to leave school. If you work in class, leave school, get a job, get married, have a family. And that's the top of that arc of life For the middle class. It was leave school, go to university, get a job, have a family.

    10:16

    In my 20s I got married and I was on sort of track with everybody else and we started trying for kids. But then we split up. So by my late 20s I was divorced and living alone and the interest rates went up which is very current at the moment and I couldn't go out for like two years because just paying off the mortgage and that was a key to two, three years really of where you're not socialized. And in my mid 30s I found another partner and we got on really well and she said to me I want to have your babies. But then we split up, so timing of relationship starting and ending, circumstances of the mending and the partner you pick. And then I met my wife and she's older and she said you know, I really want to have kids in my mid 30s, but now because she's a medical professional, so I don't want to risk being an older mother and what that means for my health and also any baby. So if you want to be a dad you can have to find somebody else.

    11:27

    And because I was really broody I really was it was like a big dark cloud hanging over. Now all I could see was other people reproducing quite easily and it can be annoying if somebody think, wow, do you? How are you being a parent and I'm not. So it affected me mood-wise. I already was miserable about it, so I was depressed. I was anxious as angry for sure. I think frustration is a big thing because it's the ideal and there's where you're at and that gap and how do you get there? So for me it was in my late 30s. How would I find somebody else? I know I've got a woman I love. That element of my life is great. It's just this part, it's cherry on the cake. That's a lot of people call it.

    Angela Walker

    Host

    12:25

    Do you think you felt cheated out of the life that you'd expected to lead?

    Dr Robin Hadley

    Host

    12:34

    hmm, that's a good question and certainly a lot of people do feel that. I think it depends at the time, so I wouldn't. I thought I wouldn't say cheated, but there's something around that.

    Angela Walker

    Host

    12:50

    Maybe, maybe because your situation was circumstantial and I may be, for somebody who hasn't become a parent because of infertility, that's, yeah, slightly different, because they've, you know they've. They're in a situation where they feel like their bodies let them down yes, and sometimes it's the genetics of let them down.

    Dr Robin Hadley

    Host

    13:14

    Within that there's another angle to it in that people who've diagnosed with some form of infertility actually well, I know what's the issue is. It was that time when I didn't know when we were trying. And for the women that's quite an invasive procedure infertility treatment and quite often involves loss, miscarriage, early pregnancy loss as well. So there's a lot going on there. But actually to find out right, it's me I know now why we can have kids. I can move on. Other people can't. And sometimes in some societies, although it's the man, the woman will claim that it's her infertility to protect him. But also it's sort of more acceptable and understandable for women around that element.

    14:16

    For people go through infertility treatment and it's undiagnosed, which is we're not quite sure. There doesn't seem to be anything particularly wrong. Some of your levels on a hormone maybe slightly low or this slightly acidic. Here I won't go into biological details because not a biologist, I don't want to upset anybody by saying the wrong thing but there's little balances and a little bit low. This isn't quite right, but it's not wrong either and we can't see and that can be very upsetting because actually the question is not answered. Why can't I have children? It's an unknown on on the element. So some people definitely feel cheated. Actually, I deserve this, and it can lead to depression, antisocial behavior, risky behaviors, risky, all that sort of thing as you people try to come to terms with it.

    Angela Walker

    Host

    15:18

    How do you think our society views men without children?

    Dr Robin Hadley

    Host

    15:24

    The assumptions people make are usually to put people other people into neat boxes. So, yes, you're not a parent, fine, you've got all the freedom in the world. Then you can do whatever you want. That's a nice box. I don't have to worry about you because you're okay. I can focus on for me. For men, because there's no social narrative, as compared to women, around reproduction, whether it's a good thing or a bad thing. Some women don't reproduce and they're seen as career orientated or there's sympathy because they haven't had the joys of motherhood. But for men, there's not the same social narrative. You're just a bachelor having a great time or you're a bit strange.

    Angela Walker

    Host

    16:15

    There's that man about town, kind of thing, isn't there?

    Dr Robin Hadley

    Host

    16:21

    And then there's a class thing in that you know, if you're a man about town these days, you've got to be quite substantially well off to rent property, to have all those things to buy into that enjoyment. When it comes to reproduction, then women tend to go slightly higher in their class, or a lot higher, but don't go down, whereas men go everywhere.

    Angela Walker

    Host

    16:48

    really, it's interesting.

    Dr Robin Hadley

    Host

    16:51

    So working class men, particularly if you're not got great educational qualifications, tend to be more likely to be childless. If this goes for men and women, if your early years experience wasn't great and you've got anxious attachment, which means when you form a relationship you're always a bit worried what's going to happen and sometimes you can be sort of overloving and smothering because what you fear is that relationship's going to end or you're like I was. I was terribly shy and worried that I'd get rejected so I didn't engage. It took a long time for me to work up the social skills to do that and again, that links to timing. So for men there's not a lot of social narrative around there.

    17:50

    For older men, there's a lot around older women being viewed as being old, and that was a terrible thing. You've got to retain the youth element. There's a certain dynamic coming through for men on the same thing, but for older men it's really you're seen as a bit of a threat. A lot of the men in fact all the men I spoke to feared being seen a pedophile and also you're portrayed as not being virile as you're older. So the same could be said around women and the men are post. You're losing your virility as such, and maybe that's how society measures us. We're measured by our virility. Women are measured by the internal virility, by becoming a mother, nurturing nature, all that sort of thing, and men are judged by their external virility.

    Angela Walker

    Host

    18:50

    We put such an emphasis on young age, don't we? When I was pregnant, I was in my late 30s and then again in my early 40s, and I was a geriatric mother, which I absolutely hated, and I was thinking well, I'm actually a very fit and healthy person, so I did begrudge that. I mean, certainly, as we get older, I feel less valued by society than I did 10 years ago, and people do look at you in a different way, even though you bring along this wisdom that you never had before. So that's like a terrible indictment of our society, isn't it that we seem to really not value age.

    Dr Robin Hadley

    Host

    19:41

    And experience. Yeah, geriatric mother is such a terrible term and I guess that came from the medical side of thing. But if you compare that to the narrative around men, oh, you're fertile, or?

    Angela Walker

    Host

    19:56

    you're life.

    Dr Robin Hadley

    Host

    19:58

    It just reinforces the difference between men and women. I guess it's a terrible term.

    Angela Walker

    Host

    20:09

    It's awful, we don't hear about geriatric fathers. No.

    Dr Robin Hadley

    Host

    20:14

    The names. I said earlier about these quite rich fellas becoming fathers. They're not geriatric fathers.

    20:22

    Everybody goes oh, look at him, look how virile he might be really, agey but he's managed to be of the dad again, kind of thing, yeah he's virile and that's an easy box to put men in but also virile, not vulnerable. So for men it's really hard to talk about not being a dad when you wanted to be a dad and there's a biological urge to be a dad. That's not often said. Biological urges are usually associated with women, but we're biological beings whatever our sex. And some people have strong biological urges, others don't. There's a variety, and most people are in the middle.

    Angela Walker

    Host

    21:09

    Yeah, it's interesting, but do you think that's because of society? We think of men as being highly sexed and they're there for the sex and reproductive side, and whereas the women we assume are there for the nurturing, mothering side. And I know that that's true for some people, but it's not true for everybody, especially in this day and age.

    Dr Robin Hadley

    Host

    21:34

    Absolutely with the change in societies. It's not true for everybody and even in, I know, stone Age times there were, probably there's still some people who didn't want to become parents but were either forced to or just didn't become parents. Yeah, it's very, very interesting the social narratives that are available and why we can't see men as vulnerable as wanting to nurture, and what's the benefit to society for that. Most societies at some point have been warlike and in war it's usually men that go off and do things, and as a form of protection for the women who are the bearers of the next generation.

    Angela Walker

    Host

    22:24

    Do you think things are changing a bit? I mean, now we're seeing more parental leave being split and paternal leave and Dad's had the opportunity of being at home in the early days for several weeks, even a few months, and that's relatively a new thing. Do you think things are moving in the right direction? Because now it seems to be a bit more accepted that Dad would be more hands-on with a newborn, whereas it used to be that mum would be giving birth and the Dad would be down the pub, you know. And now things have really changed and now the Dads do have a more supportive role.

    Dr Robin Hadley

    Host

    23:06

    Things have changed and yes, that was, excuse me, I think. In the 70s a socialist and I think an obstetrician did a study and it was very hard for even the male gynecologist to go on the maternity ward and that although women wanting to be in the pub or they kept out of that area because it was women's business and also the women. So I think there's more to it, but again, men were interested and our interests wanted to be involved. But again, the social narratives and the social pressures, economic pressures. I mean, parenthood is not easy and you don't get much training for it. Really, I don't know, I'm not a parent, but this is what I gather. It's on-the-job training quite a lot of the time and it's quite stressful. So, yes, men want to be there.

    24:13

    But is the policies in place? Can you afford to do that? Can you afford to take paternity leave? And although it is improving, it's not as good as it is in the Nordic countries, for example, where it's 50-50 split and so a father can take quite a chunk off and the mother can go to work. That's an element, I think. So I think some data is as well, that men tend to go back earlier than the leave allows. Sometimes that's due to pressure from employers. Sometimes it's actually we need money and I can provide.

    24:57

    I can care through provision, by providing money so we can buy whatever and all that sort of thing. It is changing depends on the employer and the economic situation. Because with the gig economy now, where you're on short-term contracts, maybe great. If you're on a good salary and in a specialist job where you can Say right, I'll work for six months, I'll take you a year out and then I'll come back in and it'll be fine. They're quite far in-between.

    25:35

    If you're a delivery driver, for example, in a short-term contract can you afford to take six months off, or will you get another job when you get back? All that sort of thing. So it's tricky. There's a way to go?

    Angela Walker

    Host

    25:52

    Yeah, definitely a way to go, definitely needs.

    Dr Robin Hadley

    Host

    25:54

    I think all the evidence points to having two parents looking after a child is better for the child.

    Angela Walker

    Host

    26:03

    And I think if we change our outlook when it comes to the way that we think about dads, when and paternity leave, then that would change the way that we think about men and childlessness as well, because there will be more of an acceptance of the role that men can have with babies and in the family if we accept that men are emotional beings as well.

    Dr Robin Hadley

    Host

    26:32

    Absolutely and certainly. I saw once with you where the health visitors were encouraging the men to put the babies on their bare skin, bare skin. Skin to skin, yeah, skin to skin and how that impacted on both baby and the father to get that bonding going and there's certainly some studies that say there's a neurological change in fathers and they become more empathic- and more emotional and sensitive through becoming a father.

    27:06

    When it comes to becoming a father, it gives you a social narrative to occupy. So when we were talking about bachelor's compared to similar age fathers, the fathers could say you know, my role's changed. Now I've got responsibilities at home, I can't be going out doing all that sort of thing. So in my mid 30s, when all my colleagues and peers were mainly at home, I was going out, but with basically a generation before me and you're not fitting in with your peer group and you're not quite fitting in with an earlier generation either. So that's really interesting around fatherhood and what it brings to you. And also grandparenthood is becoming more and more important now when it comes to childcare and a lot of older people look forward to becoming a grandparent and becoming involved. And certainly I think some men say you know, I can be different with my grandchild than I can with my own children because the stress is off.

    28:24

    I'm not trying to keep a roof over our head, bring money in or that sort of thing, and that's another absence from my life.

    28:35

    So, one of the things from social media Facebook tends to be older people on Facebook is the amount of things they're doing with their kids and their grandchildren and all that sort of thing. And I think one of the things we can talk about when I'm saying lack of narrative is a thing called disenfranchised grief, which is a loss that's not recognised. And when we say there's no narratives for men and why there's no nothing talked about, that's part of the disenfranchisement, because it's not recognised. Get over with it. You know you're lucky. You can have my kids. Really, I can have your kids. What would you do? So? In the film Back to the Future, he's holding the picture, isn't he? And all the people are disappearing round him as chime changes. So if you want somebody to look at, you think your kids are a burden to you. Look at a picture of you and them. And what would it be like if those kids weren't there, because kids are social bridges to schools, doctors, but locally as well.

    29:47

    So on our street every now and then you'll see kids walk down to somebody else's house to have a party and the parents are behind them.

    Angela Walker

    Host

    29:55

    Sure sure.

    Dr Robin Hadley

    Host

    29:56

    And we're not there, we're not invited because we don't have kids. It's a club we can't join and all clubs have rules and all clubs keep some people out.

    Angela Walker

    Host

    30:10

    That's really sad to hear. Actually it makes me feel quite sad when I think about it. The you know the loss not just of the children that you would have liked to have had, but of the possible grandchildren and the other social connections. Yeah, I'm sorry to hear about that. Let's talk about I know you mentioned in some of your books about childless men and overlooked when it comes to national statistics and things like that. Tell me a bit about that. What do you mean by that and what are the implications?

    Dr Robin Hadley

    Host

    30:48

    OK, well, we have a really good idea of how many childless women there are, because when a child's born, the mother's fertility history is taken, so we know how many women have had children, we know how many children they've had, but the father's fertility history isn't taken and because that date is not collected it hasn't been collected it's very hard to know the level of childlessness for men. So there's some studies, but few and far between really, and there's probably more childless men than there are childless women. So around about in the UK at the moment, 20% of women are childless and it's around about 25% of men, so that's quite a big difference. What that means is, in the future we won't know how many childless people there are In 2030, there's going to be probably around over 2 million over 65-year-olds who are childless, and that's age is important. That's going to grow with the baby boomer going through and also the growing amount of childless people there are.

    32:02

    And it's important because when it comes to health and social care, it's absolutely reliant on adult children to be involved to a greater or lesser extent. Now, as an adult child, you may not want to be involved and your parent may not want you to be involved, but the system is set up, that you will be involved, and I think, as we all know in the UK, the social care system is a real kind of worms Just from the outside. Once you get involved with it, it can be really, really complex and if you don't have somebody there to sort of represent you, just to share how you're going through things, it can be very, very difficult.

    Angela Walker

    Host

    32:52

    Well and someone to advocate for you.

    Dr Robin Hadley

    Host

    32:55

    Absolutely. What we can say from studies is that an older parent will be taken into care at a much higher level of illness and be there for a shorter time than the equivalent childless person because of that reliance on adult children. So you may be living solo, or even a couple, but childless, and something happens to one of you. What's going to happen? Who's going to bring shopping in? Who's going to, as you say, advocate, contact the doctor when you're in hospital? Who's going to be your next kin?

    33:42

    There was a report a few years ago from Sheffield where a woman had become was a hundred and they had a birthday party for her, but she'd been in residential care for 17 years. She was childless, and that's the way of family. And the person who signed that off was a niece she'd never even met and gosh and there's a lot to that. And if you think about COVID and the care homes where those pictures of family members outside or on iPads allow, at least 30% of members of those institutions were childless. So who was connecting with them? Where was their social contact?

    Angela Walker

    Host

    34:25

    I think that's interesting, not just about childlessness, but about society in general, because we don't have this village feel now, this village mentality, and I know that's something that we feel as a family. We're all spread out a lot more now, aren't we? And it starts from, you know, people who've got small children who don't have a support network, and it filters all the way through to older people who don't have a support network and I think that's, you know, that's just an illustration of the way that a society has gone. Now we're also spread out and focused on different things. We don't focus so much on family these days, certainly in this country, I think.

    Dr Robin Hadley

    Host

    35:13

    And you can be a parent and still be de facto childless, if they're on the other side of the world. And you know, families are funny, families are dynamic and there's always shifts and balances in them. People fall out, parents fall out with each other, with their children, children fall out with each other, fall out with their parents, and so you can be childhood, older and still, in fact, be childless. So there was a study, a couple of studies, by the ONS, the Office for National Statistics, reporting that in 2045 there's going to be something like a 30% increase of childless women aged 80 and over, but there was no equivalent for men, and what they pointed out was we need to improve our facilities, the care facilities and the health facilities, to account for this change in demographics. So rooms will be put on equipment we brought in, but there will also be an increase in childless men.

    36:23

    But they're not counted. They're not in that state, and so that's why it's important that we count childlessness. As you get older, things start to fail, just a natural thing. We become more vulnerable and we are going to need support, and that's just a natural thing. However much doing exercise, changing your diet will help you At some point, your body will let you know.

    Angela Walker

    Host

    36:59

    You won't live forever, will we?

    Dr Robin Hadley

    Host

    37:01

    No.

    Angela Walker

    Host

    37:02

    And it's that quality of life on that pathway. So, through your research and I mean you've written so many papers and books and documents and things about it what are you hoping to achieve ultimately?

    Dr Robin Hadley

    Host

    37:17

    I really want to put actually men are childless too. Men feel men are vulnerable and I know quite a lot of campaigns say just talk to men. It's not the talking, it's listening. You're a very good listener, but it's a skill to listen and reflect back. It's not just hearing, it's listening and actually hearing what the people say, in the gaps between the words, their meaning.

    37:52

    And if we have no social narrative around childlessness and men and the bits that we have aren't really recognizing a growing population, then that needs to be corrected, it needs to be acknowledged.

    38:09

    I think that's going to be a benefit, men and women, if we just understand.

    38:13

    Actually, you know, we're all human and we're all vulnerable and we're all a bit frail and we all can be frustrated in not achieving the ideals that are given to us.

    38:28

    So just very quickly, a couple of years ago, some guys I used to work with and I worked in the universities, the technician got in touch with me and they were in late 30s, early 40s and they were both profs. They've done really, really well and they both had become dads and I said you know, I didn't know what was missing and so I became a dad. So these were successful men, but there was something missing and the key word there, the key words are something missing, because the chance men I spoke to have always said there's something missing and it's that something missing, and the thing that's missing is a narrative, are the words, the stories to put into that gap. So there's something missing inside, emotionally bonding wise, but there's also something missing outside, in society, that actually there's nothing for me to grab hold of, to frame my experience with, and that's what words do they give us a framework to live life, the framework for life?

    Angela Walker

    Host

    39:33

    Do you think that men need to be more open about their feelings about wanting to be parents? I mean, when not before I have my children I had a yearning for children. It was like a physical feeling that I just wanted a baby and I think societies was very accepting of that. I talked about it with my friends when other people were having babies. I felt really sad for myself that I wasn't in that position and there were some people who were getting pregnant, who didn't really want to be pregnant, and there was some really like awful feelings around resentment and stuff like that and as a woman that was just quite accepted. I think Like, but I don't think that is there for men. The support isn't there. Are there support groups? Do we need support groups for people in that situation or do we just need to reframe the way that we look at men as a society and can we do that, do you think?

    Dr Robin Hadley

    Host

    40:39

    I had a yearning to be a dad as well, but I didn't have that social narrative to occupy. Would it just, I think, in a group setting just being a laughter or absolutely not appropriate to be saying that in a group of just general men. So hopefully this sort of thing. People realize that men are vulnerable and they want to be farthest. There are a lot more groups now coming forward to help many mental health and in one of my studies I found the men were as broody as women.

    41:24

    Another big myth is that women are broody and men aren't bothered. But actually my study I found out is round about the same and that's sort of based goes through with back to the biology. But also the men were more depressed, more angry and more jealous than the women. But that's kept inside and it may be more provisional for all men to say well, you know, I'm really yearning, I feel jealous because X has had a baby and I want a baby so much.

    41:56

    But for a man to say that, however, yes, there are more support groups being put out there for men generally around mental health and health and that's good and I think they're interested in acknowledging that actually not becoming a dad will be there and there are one or two sort of Facebook groups around, certainly one around infertility men going through infertility treatment and there's one for the childless men's community of face close Facebook group. That's there, I think, for men, because they're so socialized not to reveal themselves. It's very difficult. So some studies about hospital treatments find that on bulletin boards or support group boards the women stay around for a long, long time. For men, they come in, they want their information and then they go. So I think if you're doing that sort of support group thing you've got to appreciate it's going to be a big tune.

    Angela Walker

    Host

    43:02

    I think we've got such a long way to go. We talk about equality between the sexes, but really it's 2023. And it feels like we're so far apart when it comes to that, and I think one of the sad realities is that we're just still not as accepting of men's feelings. We still expect men to be macho and not talk about how they're feeling, and you know, when it comes to infertility, there's a stigma around that. Isn't there as well? Because we put so much on being virile and macho, and so I mean it must be very hard for a man to be infertile.

    Dr Robin Hadley

    Host

    43:50

    Absolutely. It's a core concept of self that I will refuse in the future. And I am virile, and then that's reinforced by the virility outside the self, and it's really interesting that sperm is one of the very few cells that can survive for any length of time outside the body, and so sperm exists outside the body and men exist outside their body. Women exist biologically inside their body and all that nurturing and all the things around women are round about inside the body and that's just an interesting thing to me. An observation, let's say but yes, absolutely. For men who go through infertility treatment are infertile, then it's a big challenge to their sense of self, because we all nobody questions their virility unless there's a reason to do that when you're used to assume to be fully fertile.

    44:57

    So when it comes to you that actually you're not, then that's a real knock on who you are and how you think of your concepts of yourself. And part of that, depending on which social cultural environment you're in, is what will other people think of me and what are the social narratives around that? So a couple of studies from South Africa. One was titled you are not a man if you're not a father. And while some societies are over and it's out there for that, others I think that the Western societies it's covert so it's not really said, but deep down it's there.

    Angela Walker

    Host

    45:43

    How do you see the situation changing in future?

    Dr Robin Hadley

    Host

    45:48

    I think it's positive actually because I think there's a lot more information around for everything but around reproduction and I think what I see of younger people and younger men, they're much more interested, much more in tune and they want to find out. I know there's a lot of negativity around younger men, but actually you talk to a young man and they're intelligent, they're socially and emotionally aware. Again, you've got to be careful where you do it and to make sure it's safe. This is a big thing about men is it's safe for them to reveal themselves and to be open around what's making them vulnerable?

    Angela Walker

    Host

    46:42

    It struck me when you said about you couldn't talk about how you felt, about your longing for children, in case you were laughed at. I thought that was so sad.

    Dr Robin Hadley

    Host

    46:52

    Yeah, and quite often it's not unknown. If an infertile man does say something that other men will say oh well, you're a jaffa, I'll come round because I've got three kids, so my sperm's great. Why do men occupy those narratives is because not reproducing is such a threat that a society doesn't really cope with it very well. And if society didn't cope with it very well, how are individuals who draw their framework from society supposed to cope?

    Angela Walker

    Host

    47:37

    What do you mean when you say not reproducing is a threat?

    Dr Robin Hadley

    Host

    47:42

    Well, it's a threat because we're supposed to be fully fertile and we're supposed to be virile and one of the highest status marks is becoming a parent, for a mother and for a father. There's certain rights and statuses that go built in with that. So you can have maternity, paternity leave, you can take time off Companies do do family days. So I was working on a project last year at Manchester Metropolitan University on complex fertility journeys and how people dealt with work while going through IVA Treatment and it was very emotional.

    48:32

    Some of the stories we heard you know photocopies of babies by photographs of babies by the photocopier or pinned on a notice board, or emails coming around saying so and so is pregnant, so and so has had a baby. Babies being brought in and in Kobe, babies being brought in the onto the zoom meetings. I just reinforcing I'm not where I think I should be. So it's an existential threat and a very big level. It's an existential threat to the species because all species want to reproduce, want to bring in the next generation. It's a core thing that may not be verbalised, but it's inside us.

    Angela Walker

    Host

    49:20

    Being a childless man has shaped so much of your life, robin, but how do you feel about it now?

    Dr Robin Hadley

    Host

    49:27

    In a way my research is my baby, I guess, and that has been. I developed and grew it and it's out in the world. How do I fit? It comes and goes. Now I've got a narrative I can draw on. Research I can say does this?

    49:44

    I understand why I'm childless. It was circumstances for me. I may be infertile never a test, but the majority of the time it's as a resume is circumstances and I can pass that knowledge on. So that's a good thing. But so the house next door has got some younger kids and they've got a trampoline in the garden and can hear their screams and chat and life. And that's beautiful for me, to hear the kids enjoying themselves and being there. But it's also a bittersweet thing because they're not my kids. I won't be in that garden, I won't be providing for them and it won't be my grandkids either doing that. So for me it's bittersweet and I can go there anytime I want. But I also can go and say well, I know why that's happened and I think this is one of the things for me knowing why you are and how you got there and the circumstances around it helps be in the modern world.

    Angela Walker

    Host

    51:02

    And if there's anyone listening, if there are any men listening and they would like to support, where would you direct them? For that?

    Dr Robin Hadley

    Host

    51:11

    I would direct them to the Childhood Men's Community on Facebook. I would go to Andy's Man's Club Samaritans. Just look around your local area. There are support for men generally about mental health and physical health and you can go and just draw on those things for yourself. Therapy is a great thing. All the way through my well, obviously, I trained as a counsellor, but also all the way through my PhD, I went to therapy to help me understand, and that can be really really good. I want to one in a safe environment. I knew it was safe. I can be vulnerable and I can be vulnerable here because I know what it's about. I know that me being vulnerable enables other men to be vulnerable and what I expect is they won't go. You know you can say, well, look at him, he does this and the expector can say, yeah, but that's not me. But that's the beginning. What is you? Then? You can build on that.

    Angela Walker

    Host

    52:25

    And what it sounds to me like reaching out is key, and reaching out in the right way to the right people in a safe space would be the thing to do. Robin, thank you so much for joining me today. It's been really fascinating, and I wish you all the best with the rest of your studies, and I'd like to keep in touch and to find out more about what you're up to in the future.

    Dr Robin Hadley

    Host

    52:50

    Well, thank you, it's been really enjoyable and I look forward to keeping in touch.

    Angela Walker

    Host

    52:55

    I'm Angela Walker and I've been in conversation with Dr Robin Hadley. I hope you've enjoyed the show. If you have, please leave a review and subscribe. It really helps, and for more information, you can check out my website, angelawalkerreportscom.

  • 27th August 2023

    Imagine what it's like not to be able to eat, not because of a lack of food, but because of a rare disorder that prevents your body from processing it. This is the reality for our guest, Celia Chartres-Aris, living with Loeys-Dietz Syndrome. Celia's condition requires her to be reliant on a feeding tube for nutrition. Her life is a testament to resilience and strength, and she joins us to shed light on her experience, from dealing with verbal abuse to answering inappropriate questions, all while living with a feeding tube.

    Our conversation takes a critical turn as we scrutinize how legislation often fails to protect those with disabilities. With Celia's life as a backdrop, we examine poignant examples like the introduction of the Down Syndrome Bill, the care for children, and current access and architecture requirements for public buildings. We focus on the urgent need for inclusive policy making that involves the disabled in the process, underscoring the importance of designing everything right from the outset, with accessibility in mind.

    The final part of our discussion turns to the crucial aspect of accessibility and inclusion. Listen as Celia recounts instances where she was denied access due to her disability, and how she uses these moments to educate others. We explore the Access Maturity Model, a tool organizations can use to assess their inclusion and accessibility policies. We conclude our conversation by emphasizing the importance of diversity inclusion, stressing the need for disabled people to be included in design and entrepreneurship roles, and a deep understanding of these critical issues.

    Angela Walker: 0:08

    Eating is a pleasure most of us take for granted, but for some people, their medical conditions mean their bodies can't process food and they need to get their nutrition through tube feeding. My guest today is on a mission to demystify parental nutrition. She is a disability advocate who shares her experiences on social media. I'm journalist, angela Walker, and in my podcast I interview inspirational guests and discuss under reported issues. Today I'm in conversation with Celia Chartre-Arris. Hi, hello, celia. Thank you so much for talking to us today. I first came across you on social media and I saw some of your posts about how you were sharing your experiences and you're just so positive about the way you deal with your situation and your disabilities and I thought I just really wanted to talk to you to hear more. So, first of all, do you mind sharing with us your situation?

    Celia Chartres-Aris: 1:08

    So I have a very weird and wonderful disability that not many people know about. So I was born with a genetic abnormality called Loeys-Dietz Syndrome, which is a fault in my connective tissue, which basically means my body can't produce collagen properly and all of my organs that work properly and my heart's very fragile, and my list of what's working in my body is probably very, very short compared to the list of what seems to be going wrong in my body. But one of the main side effects of it for me is that I have something called complete intestinal failure. So from my stomach all the way through my intestinal system, I have paralysis, so I can no longer eat or drink anything, not even water, and when I say that to people they get very confused about how I then survive as an individual. So I'm on something called TPN. I've been through various different feeding tubes, such as nasogestinal feeding, which is through your nose and into your stomach. I've been through peg feeding and then dredge feeding, which is almost permanent versions of the feeding tubes that we typically associate, which are the ones that go through your nose, around your ear and sort of hang down. But I now have something called a Hickman line, which is basically like a giant cannula and you know, when you go to hospital you have it in the back of your hand. It's effectively a permanent version of that on my chest which gets tunnels from your chest up into your jugular and then it goes down into your heart. So all of my nutrition completely doesn't go anywhere near my gastro system and for 14 hours a day I effectively run a blood infusion which gives me all the calories and the nutrients that I need to survive, so nothing bypasses my mouth anymore in terms of food and water. So I even have to be very careful when I'm brushing my teeth not to kind of roll it down while I'm doing it. So it's a rarer form of feeding tube and I've been through the other versions. But because I want to make it kind of be stigmatized, feeding tubes and put them out into the ether, because they're still so underspoken about and rare diseases are also something that really people don't touch on very much.

    Angela Walker: 3:23

    Yeah, I mean, if we saw someone with a feeding tube, we might notice, but we probably wouldn't mention it. We will probably be very careful not to mention it because we might have anxieties ourselves about upsetting somebody. Like, what reaction do you get from people when they see your feeding tube? Because you're so open about it, aren't you? I mean, you've done modelling with your feeding tube and proudly on show, I would say it's the reaction I get from people doesn't ever tend to be a positive reaction.

    Celia Chartres-Aris: 4:00

    I notice that, you know grown people, not children. I treat children very differently when they react to me, because I feel like it's an opportunity to educate, that. That's something. They might not seem to fall, but I get people shouting at me on the street all the time. I've been kicked out of restaurants, but I'm fat, with my family and they're all eating, saying that I'm not a paying customer so I shouldn't be there. You know, I've been stood at a bar with, with groups of men surrounding me going what's this? Pulling on it and and you know, I guess I can't buy you a drink and all of that kind of stuff. The reaction tends to be a mix of very negative people making fun of you, you know, pointing and laughing at you, and then the other half of the reaction is people asking questions, and I think it's so brilliant when people are asking questions because I want people to learn, but there is a approach in which you do it and there is a level of respect that you owe me as an individual and not me being high and mighty saying you know you have to treat me a certain way, but it's just about decency, about how you treat other people, and if you're genuinely inquisitive and you want to learn, that's incredible and I want to encourage that. But if you're asking questions, do it in a polite way because you know I get people asking me and I have nothing that is to do. When you've got something wrong with your bowels in your Guts, you lose all all lack of kind of. There's nothing to do to talk about anymore. But I've had people you know in a crowded place ask me what happened when I go to the loo and they've not even introduced themselves. The same way, if you don't eat or drink anything, you know what happens when you go to the bathroom and I sort of say "hi, my name's Celia, really nice to meet you. Shall we have a conversation before we get to that point?

    Angela Walker: 5:44

    I'm horrified about what you're saying, Celia. I'm absolutely horrified. I mean, let's just go back a bit. That what these people have been doing, like touching your feeding tube, that's abusive. That's ass ault, isn't it? And I mean you're saying that this happens to you all the time.

    Celia Chartres-Aris: 6:01

    Yeah, it happens all the time and I think people because my particular feeding tube is on my chest as as as someone that identifies as a woman that is a very vulnerable place of our bodies. That's a very intimate area, it's a very sexualized area and so you already feel quite conscious when I go out with my tube visible, because it's an area that people tend to look at and it's a. It's an area of a female body that people tend to notice a little bit more, but it's a very vulnerable place in my body and I would never I hope that people out there would never go up and touch your woman's chest anyway, but because there's something there, people feel like it's their right to be able to go oh, what's that? And sort of reach their hand out and my instant reaction is step back, please.

    Angela Walker: 6:48

    This is this is not acceptable behavior. No, it's not. The only comparison I can possibly draw from that is when I was pregnant and strangers would want to touch my tummy and it's like you don't get to touch my tummy when I'm not pregnant, so you sure as hell don't get to touch it now, well, that I am, and that's the only kind of very. It's a very different example, but you know it's about somebody coming into your space, isn't it? And touching you and that's just so unacceptable. And and I know you said that that you don't mind people asking questions, but some people with disabilities don't feel like that. I, I know that there was a lady who's posting on social media about somebody who is asking her about her visual impairment, saying how long, how long have you been blind, kind of thing, and she was really annoyed about that because she was like it's none of your business. So I think people might be Interested and intrigued, but Personally I wouldn't feel In this situation. I probably would ask you because you're very upfront and you said that you don't mind me asking, but I would never dream of saying to a stranger on a bus oh, why have you got that tube? What happened to you?

    Celia Chartres-Aris: 8:06

    then you know I just wouldn't do it and I think, around asking people questions, it's completely individualistic whether people are comfortable with that situation and it goes back to what I said at the beginning of you know, if you're gonna ask me how do I go to the loo before you've been even introduced your name? That's not something I'm comfortable with and I'm only ever comfortable with questions If I can see that your intention is genuinely to learn about my condition and about my experiences and also Learning how to make me comfortable, because our world revolves around food and drink. So I'm sort of always very awkwardly standing in a bar or sitting in a restaurant or whatever it may be and surrounded by food, and when people make a genuine effort to make sure that I'm comfortable and okay and happy, I find very comfortable thing and it makes me feel very safe because there's a very vulnerable environment to be in. That can send me into quite a lot of panic about the environment that I'm in. So all the all about intention and about how you're asking those questions and also judging the situation Individually to is this person wanting to talk about it? Because actually sometimes when people ask me questions, I just sort of put my head in my hand with the thing oh, I don't want to do this today, like I'm not in the mood?

    Angela Walker: 9:25

    Yeah, of course, because you're meeting different people every day. Surely you don't want to have to tell your story again and again, and again. I can totally appreciate that, and so can I ask you was there a time when you could eat food normally? Yeah, so when?

    Celia Chartres-Aris: 9:43

    I was small, so I also have something called Marfan syndrome which is a little bit more known about. So for context, I'm six foot one and a half, so if anybody's ever met me in person, I'm a very tall girl and I was born with my disability, but it's a degenerative condition. So when I was younger I was always unwell and I was both breaking bones, you know all of that kind of stuff and but I ate like an absolute horse. I was little because I was growing so quickly because of my Marfan syndrome and then I reached sort of later childhood night, was diagnosed with various food allergies and then food started making me feel very unwell very quickly and it all happened very, very quickly and I just I couldn't keep food down and it was like my body was allergic to everything and I was losing a lot of weight very quickly. It was a very dangerous situation because medical gas lighting, unfortunately, they saw a young girl losing weight very, very quickly and shoved me in eating disorder therapy. They wouldn't scan me and I went through that process for about two years trying to go to diagnosis and I ended up in intensive care and they finally did the motility scan which, if anybody's not aware of they basically make you swallow some tablets that have shapes in them, and then they scan you at regular intervals so that they can track how quickly the shapes are moving through your system. And they found that after 72 hours so over three days of me swallowing the tablet, the tablets were still in my stomach. They had my stomach hadn't emptied, nothing had passed through. So that was then the beginning of my journey of actually getting access to the help that I needed, but at that point I'd done kind of irreversible damage to my body through just years of malnutrition.

    Angela Walker: 11:40

    I'm so sorry to hear that. And so how did it feel when, finally, you had that scan and there was an acknowledgement that, yes, you have got a medical condition. You're not just what I don't say, I don't mean, you don't just have an eating disorder, what I mean is and that they'd completely just made assumptions about you. Finally, you had this recognition that there was a serious problem, serious medical problems.

    Celia Chartres-Aris: 12:09

    It felt like a massive mental relief because if anybody and I put a trigger warning here around medical gaslighting because I know for me I store a lot of trauma because of the experiences that I've gone through through medical gaslighting I've made the most amazing group of girlfriends and awards that I've been on, because we're all there at the same time, there for long periods of time and every single one of us share the same experience of. We were presumed that it was mental health induced and when I finally got that answer it was a very difficult thing to process because if you've been, you have a medical professional telling you you know the reason for your weight loss and the reason why you're feeling so unwell is because of anxiety and because you've created a negative relationship with food. You start to believe that if you're put in therapy and a medical professional is telling you you know this is just anxiety. You've just got to learn to love food again. It was a very difficult thing where I finally had my aunt through and it felt so relieving that I was right and I knew I was right the entire time. But then I had to undo that kind of medical gaslighting that had been put on me and try and unpack that trauma of not being believed for so long. And once I was out of my disability, with still ravaging my body in other areas, having heart attacks and you know, I caught meningitis which made me really unwell, and tons of broken bones and having artificial implants in my arms and all this kind of stuff. It was like a train hit me all at once. And I remember when the doctor came in and said you're never going to eat again and I remember the first thing that came to my mind was rats. Last thing I ate was a jacket potato. How bloody boring is that. I wish I'd gone absolutely wild and just have loads of twixes in my face or something. But I remember sitting there thinking what do you mean? I could never eat anything again. I've been developing this negative relationship with food because it was making me so unwell. But it felt almost a bit like I was in grief where I thought how am I going to function in society? Everything is about food and everything is about drink. I'm never going to have my own birthday cake again. I can't eat my birthday because it happens to fall on Christmas Day. So, as you can imagine, birthdays are a very different experience for me. The birthday that came to my mind was oh my gosh, my birthday is going to be awful. I can't have Christmas lunch and I can't have Colin the Caterpillar cake. What am I going to do? It was very difficult.

    Angela Walker: 14:54

    And so how many years ago was that Celia.

    Celia Chartres-Aris: 14:58

    So I haven't eaten anything for about three and a half years now, and then for about six or seven years before that I was only having sort of a tablespoon of food a day because I've been supplemented by other forms of food, and it was basically eat what you can, but your feeding tube's there to back it up. And then obviously those feeding tubes started failing when the paralysis started spreading further and further through my system.

    Angela Walker: 15:26

    So what's happening inside you right now, like with your stomach and intestines and everything, Because I suppose you know, if you're not using them, then what's going on inside your body?

    Celia Chartres-Aris: 15:39

    So I suppose it's quite difficult to explain but, kind of stripping it back from the medical terminology, it is its paralysis, so effectively. With paralysis, what's happened with me is I don't have a movement called peristalsis. I'm sure we all learn strategies. The SC Biology is basically where your rings of muscle contract and push through. So I still go to the loop because I have waste products in my body, like we all do. But that's, that waste product is able to travel, kind of following gravity for wanting to go a bit of not as graphic as probably for individuals with pod cars, but it moves very, very slowly and it moves very in its own time, should we say. And one of the largest problems I have is obviously stomach acid needs to filtrate itself and it needs to come out. And one of the big problems I have is that anything that's in my stomach, it's a warm, hot, acidic environment in your stomach so things rot and effectively go off. So that's why I'm sick all the time, that's why I have kind of bad bowel movements all the time is because effectively every coming, everything coming out of my body is effectively gone off. So it should have come out weeks ago but it hasn't. That makes me very unwell and the feed that I'm on, which comes in through my heart and through my veins, as you can imagine, pumping fat, sugar and calories directly into your bloodstream, it keeps me alive but it will cause me a liver failure at some point because you know you're not going to bring up any. One of the ingredients in my TPN is olive oil. If you try to pump olive oil into your veins, we all know that that would make you very unwell. So it's a very pouch related system of working out with some benefits and I'm still very underweight or very sick, nowhere near kind of weight maintenance, but I'm getting as much as it's safe to do so and I use the word safe and a birth of cognitive, but it does have a very negative impact on your liver and your kidney.

    Angela Walker: 17:54

    So what's the long term prognosis then?

    Celia Chartres-Aris: 17:57

    So, because I have an overarching Loeys-Dietz Syndrome it's a very rare and very unknown illness. My entire life I've been told the way that I'm going to pass away is from an aneurysm, which is where your aorta dissects from your heart. And unless you're lying on an operating table, the risk but the survival rate for that is quite slim and I know that that can happen any day. And as my condition gets more and more degenerative, my sort of life expectancy keeps shifting by about five years every time I go and see the doctors. So my prognosis is I don't know how to answer that question because I'm very malnourished, my heart doesn't work properly. I have to have scans on it once a month to check the size of my water. So it's a bit of a blessing in a curse knowing how you're going to pass, but I suppose it just means take every day as it comes and just my goals are never sort of five, 10 years. Then what can I do in the next year? And just hope that all the things I want to do happen? I think yeah, Gosh, sorry.

    Angela Walker: 19:14

    No, you're so upbeat and I just want to say thank you so much for sharing this with us, because you've been through so much and you are still going through so much and you know to talk publicly about it. I just think it's amazing because there will be other people listening who are in a similar situation, and you're still going about your life, living life to the full and achieving so much. I mean, let's talk about your work as a disability advocate. I mean, you're on the disability 100, aren't you? You're one of the most influential disability advocates. Tell us about that. Tell us about your work and how you made it onto the list.

    Celia Chartres-Aris: 19:55

    So my work, I suppose, is very niche. There's not many people doing it, so I work with governments and policy leaders and large organisations to look at legislation and policy that governs us all every day to make it more accessible and inclusive of disabled people. Disabled people make up 20, over 20% of the population. The numbers have just dropped from one in five to one in four of us identified as being disabled. Yet the level of consultation and how inclusive our legislation is is not where it needs to be, and so basically what I do is talk to anybody that will listen to me and do lots of research, collect lots of data, put it out into the ether and try and change the law and try and change policy to make it more inclusive of disabled people.

    Angela Walker: 20:45

    Can you give us some examples of policy I mean, you know if you've got a disability as an individual that affects you in every possible way, but explain how some of the legislation we have doesn't take into account people with disabilities?

    Celia Chartres-Aris: 21:03

    I mean. So there's so much. You just have to look at the news to see what's going on where we're currently need. We need to do better. One example is about send provisions in schools. We recently had the introduction of the Down syndrome bill, which is revolutionary. Previously we were being governed off legislation for individuals with Down Syndrome that didn't expect anybody to live past the 11th age of 18, which meant all care for anybody with Down syndrome stopped from the state and you weren't able to access what you needed at the age of 18. Taken, you know, a very, very long time to get that legislation changed for the fact that people with Down Syndrome can live the most incredible life well past the age of 18, but we had no legislation or support protecting those individuals. So that's a really good example of some positive change that's happened recently. Other examples of a federal around SEN care for children and access. Individuals who acquire their disability that don't necessarily live in an acceptable home are sat waiting two years, three years, four years to get help to put in accessible bathroom or to get handrails up to their property or to get a wheelchair around so they can get out into their garden. That's not acceptable. We can't be waiting three or four years to be able to maneuver around their houses. I've spoken to people that haven't had a shower in two years and their partner is having to wash them with a flannel because they're sat on a waiting list to be able to get an accessible child that they can get into. So these are some examples of where currently we're not getting it quite right. Another really good example is something called document M, which is around architecture and the requirements about how accessible a public building has to be, so whether they have to have a lift, accessible bathrooms, correct signage, quiet room, handrails. So we have that piece of legislation which stipulates what's needed. So these are public access buildings, so something we all have a right to access and enjoy. Document M is currently optional. You don't have to abide by that piece of legislation. So if you build a new museum in the middle of London and it has no wheelchair ramp, they're not breaking the law in any way. They're just being advised that they should be. Yeah, it's, we have a long way to go.

    Angela Walker: 23:30

    When I had my first child and I had this massive pram to push around. That was when it struck me how inaccessible everywhere is. You couldn't even get around a shop. You couldn't get into a bank, you'd have to go oh, can somebody help me? You know, and you want to be independent, and so I can imagine for people who are in a wheelchair. They don't want to keep asking for help to get into buildings that they need to get into. Something I noticed when I had quite a bad wrist injury and my hand was out of action. I was off work for nearly a year and I had lots of surgeries on it and I lost a lot of strength and I couldn't do anything. I couldn't wash myself, I couldn't open the door. But what I noticed was when I had a very weak hand I couldn't do door handles that were round I couldn't take use plugs. You know, put my hair dryer. I couldn't plug in the plug into the socket because it was really small and a weird kind of shape. Now, having a door handle that somebody with a weak hand can use means having a door handle that everybody can use. It's no skin off the nose of somebody who hasn't got a hand problem. So it just kind of makes sense to make things that help everybody, because they help people with disabilities. But they're helping everybody, aren't they?

    Celia Chartres-Aris: 24:51

    Exactly and kind of a mantra we all need to adopt a little bit more in our lives is accessible from the point of design. We shouldn't be waiting for the termination to happen. We shouldn't be waiting for people to not be able to enjoy the same opportunities and the same access of everybody else before we have to go back and fix it. Just do it from the point of design. Why wouldn't you want your buildings more accessible for disabled people? Why wouldn't you want that? Everybody agrees with that. Everybody agrees with inclusion and accessibility. But one of the problems we have is that it's not the representation of disabled people at the heart of these projects and at the heart of policy leading and at the heart of these large companies. You take the FTSE 100 list of the executive. Currently nobody has declared that they are disabled in the FTSE 100 executive teams. We're not at the top, we're not in the position as implements as much as we would like to be, and that's a real shame. We have to break that down and look at where can we break down barriers to make sure that disabled people are at the heart of conversation at all times with the largest minority group in the world, but we share about 0.1% of the share of void. Those figures don't add up.

    Angela Walker: 26:13

    And that's where you're coming in, because the work that you're doing is so influential, I mean, when you're taking part in these talks with government officials about legislation. How did you end up in that position in the first place, celia? Because that is an influential position to be in, which is amazing.

    Celia Chartres-Aris: 26:33

    Thank you. So I spent. My background is I was always interested in law, always been very politically, I suppose inspired in, always been so engaged in the news, always been so engaged in conversation and wanting to always be a part of it. And I studied law at university and specialized in human rights and international law as well, and employment law as well, and I went straight into the legal environment after I graduated and thought right. I'm gonna be a high-flying lawyer. This is what I'm gonna do. And about six months in I quit because the environment was so inaccessible. It just didn't work for me. It was so uninclusive and I was driving myself into the ground and I had to take a year off while spending a year in bed, kind of recover myself from the experience. That was six months in the legal industry, very unwell at that point. And I lay there every day and I thought I've had my dreams absolutely crushed, not because I couldn't do it, not because I wasn't capable of doing it, because other people around me wouldn't let me do what I was able to do. It may be a different way of doing it, but I'm still able to do it. Things like, you know, not being given time off go to doctor's appointments. I have a blood infusion at four o'clock every day and I cannot miss it. No, you are not leaving that desk. What happens if I come back and do it an hour afterwards? What's the difference from doing it at four o'clock, doing it at seven o'clock? No, sorry, that's not how we work. And I lay there and I thought the law needs to change and no longer can we accept this argument of well, look how long it took for women to get the vote. Look how long it took for us to abolish slavery. Have we not learned from the mistakes of our past that people are suffering, people are dying, people are living at a lower quality of life in a way which is entirely presentable. People are losing their lives, both through mental health and physical health, and the combination of the both, because as a society, we are not acting fast enough and we are not prioritising. And that is what drives me.

    Angela Walker: 28:52

    Yeah, I wanted to talk to you about the mental health side of things, because I can just feel your frustration resonating through. You're such a fighter, celia. I mean you're fighting against this really debilitating condition, but you're also fighting against these restrictions in society that are just so unfair, and I think that's really hard to deal with when you've got the talent and the intellect that you have, and it's so great to see you just channeling that in to doing good and to make positive change. What are you working on at the moment with regards to legislation and so on? I just want to say thank you as well.

    Celia Chartres-Aris: 29:40

    I said very lovely comments and I always feel a bit like I never know how to take off of it, so that's very lovely, thank you. So my biggest project that I'm working on at the moment is called Access to Funding, and we've actually had our paper published in four which is really exciting which is looking at the inequalities in the investment space. So, statistically, disabled people are much more likely to set up their own businesses and we over-index on creativity and the ability to think outside the box and resilience and determination. So there is a whole host of disabled founders and entrepreneurs out there, and what we did was we noticed the inequalities that are happening in the venture capital space. So we launched this very large data collection projects, interviewing and collecting data from the most incredible people with the most incredible ideas, and some of the statistics that we've drawn out are really shocking, and our kind of figurehead statistic is that when we ask disabled entrepreneurs, do you feel like you are treated equally to other entrepreneurs? 98% of them said no. So what we are doing is looking at the investment and the entrepreneurial space and the business space in general, working with government and also working over in America and working directly with investment firms and disabled founders to break down that inequality that's currently happening. We are blocking people out from businesses. Not only are we blocking them out from the employment space because that inaccessible in itself, but now we're blocking people from setting up their businesses. So that's something we're working on at the moment.

    Angela Walker: 31:17

    Are you talking about someone who's starting up, who can't get a business loan, for example? Is that the kind of thing you're talking about? Yes, so?

    Celia Chartres-Aris: 31:24

    we're talking about the whole picture and mainly focusing on investments. So when you go to investors and you say I've got this amazing idea and I need X amount of funding venture capital firms, people are being discriminated against from the offset not on their ideas, because they're not good enough, not because they haven't got the mechanisms in place to do what they wanna do purely based on the fact that they're disabled. Discrimination is active everywhere against disabled people and we're not talking about it enough as a society.

    Angela Walker: 32:02

    So how can that be changed? How can you convince an investor to invest in you, regardless of your disability? I mean, are you saying that there should be some kind of like legislation to stop that from happening? Well, from the offset.

    Celia Chartres-Aris: 32:19

    things like if you go on the govuk website and you wanna download the form to apply for a business grant, it's not available in the incredible formats. If you go to an investment firm and they say submit your pitch, and it's an inaccessible website and it's an inaccessible email address to get to them, what are you supposed to do as a disabled entrepreneur? So what we've designed is something called an access maturity model and we've trialled it across various investment companies with great success about how organizations can look at their internal policies and how government can look at their policies around accessibility and inclusion. Everybody has the appetite to be more acceptable and be more inclusive, but there is a lack of information and a lack of awareness out there as to how large the problems are, so people don't think about it. It's not on people's radar because people can't even access to start the conversation. So we're working kind of across all sectors and all industry, including the charitable sector, about how can we promote not only accessibility in the employment space but also accessibility for disabled founders and disabled entrepreneurs. It's really exciting and it's been picked up very heavily, which is a really good sign, and we are moving forward.

    Angela Walker: 33:38

    I'm so excited to see where that goes, because I'm sure that we have people who don't have disabilities designing things for the people with disabilities and that doesn't make sense. So to see people with disabilities having access to running their own businesses, designing their own products, doing their own thing, making products for themselves, I think is great and any change that comes about it's got to be positive for everybody. It's not giving more rights to people with disabilities. It's not taking rights away from people who don't have disabilities. Is it.

    Celia Chartres-Aris: 34:20

    This is the thing is I constantly hear what's the burden going to be on when we need to do this. Accessibility and the right to be able to enjoy what everybody else enjoys and the opportunities everybody else has. It's just that it's a right, it's not a privilege. We're not doing people a favour by allowing them to access a museum, or it's not even. It's not allowing. It's ensuring that people have the same rights as one another. We live in the most, I think, 14th developed country in the world, but I'm not able to go into a music festival because I carry a feeling with you. How does that work?

    Angela Walker: 34:58

    Tell me about that. You tried to go into a festival and you weren't allowed because of your disability.

    Celia Chartres-Aris: 35:04

    Because of new legislations around carrying liquids, because of terrorism threats. You go to any large means of transport. Even if you try and go to a club or you try and go to theatre, they will say water bottle in the bin please. And you say, yeah, completely understand, I'll buy one inside. I'm carrying two and a half litres of fluid on my bag. That's very clearly connected to me. I always this is not me being high in mind, just saying people should just presume I always carry my paperwork. I even carry this little QR code that people can scan that takes you directly to a charity's website to explain very succinctly what's inside my bag. I carry a letter from my doctor that says, no, you cannot open this bag. No, you cannot search this bag, but this is signed by five doctors from a very good hospital that this is what the content is and she has complete autonomy over that. But you try bringing two and a half litres into a venue where the security is not accessibility and inclusion trained and I have been taken away multiple times despite producing all the evidence that I require. I recently went to visit one of my friends in Ireland and I got strip searched at the airport strip searched because I was hooked on my feeding tube, Despite having all my paperwork, having, you know, letters from the pharmacy, letters from my consultant, letters from the company that provides the feed, and they thought it necessary to strip search me.

    Angela Walker: 36:35

    I'm so sorry you went through that. What I'm horrified. What happened after that? When they strip searched you and they could see that your feeding tube was connected to you, what was their reaction?

    Celia Chartres-Aris: 36:50

    The same as it was when they started it, and I I suppose I try to use them as educational moments rather than feeling anger. Of course I feel anger, but I just I try to keep that to myself and say right, this is the moment to educate somebody so that the person that comes after me that's similar to me doesn't have to go through this experience. So I was my last trip where I was strip searched. It's happened more than once, unfortunately. I sat down with the lady that per formed the search and there were a couple of other people in the room and I said you know, this is what it is, this is what it does. I want to make you aware that this is a violation of the Equality Act. This is against the law. For you to do this, you have no reasonable grounds, and that's what you need is. You need a reasonable assumption that I'm up to no good and I have not given you anything to prove to the otherwise. And so I use it as an educational moment to say you know, please pass this on to the relevant individual, but I will be following this up with an email, as this is a violation of the Equality Act. This is against your right to strip that me down. You know, I'm quite happy to take my shirt off and reveal the tube so that you can see where it's connected. But that level of lack of respect is unacceptable and their draws align. I completely acknowledge that extra steps may have to be taken. I completely acknowledge that, but if it's all about the safety of other passengers, but that level of disrespect is very hurtful, yeah.

    Angela Walker: 38:23

    So afterwards you complained and wrote an email, and then what came of that? How far did you take it? I never got a reply. Gosh, I don't know what to say to that. I'm speechless actually, because you are so open and you would be willing to sort of show them where the tube goes into your chest. I can't understand why they would feel the need to take that further, and I'm so sorry that that's happened to you.

    Celia Chartres-Aris: 38:54

    It's I mean it's, but it's even online. You know that post I put up recently saying it's feeding people when, if we can, nobody knows about it. It you know so many hundreds of people commented on it saying you know, I didn't know, and this is amazing. Thank you for waking up, aware. But there was still those idiots who commented going why have I got to give you special compensation? If you're in a bar and you're not buying a drink, you're taking up space of someone that is gonna buy a drink. Yeah, fair play to the bar owner who asked me to leave. You know, if a parent came into a pub with a child and the pub the parent was having a pint, would you ask that child to leave? I'm not comparing myself to a child, but I'm saying where have we reached the point in society where now I can't even go into a bar and stand with my friends? You're not supposed to have a social life. I get called a freak all the time. All the time, it's people's favorite word to call me for some reason.

    Angela Walker: 39:51

    Yeah, I'm stunned. I'm stunned, but I would have to say that you just take it all on the chin and you're using that negativity to turn yourself into a power of force for good, and that is amazing. Now you've also been on the global diversity leaders list, because I think you're just fueled by this horrible stuff that happens to you and you're such a determined woman. Tell me about the global diversity leaders list and some of the awards that you've won, celia.

    Celia Chartres-Aris: 40:25

    So I feel incredibly honored to have every mention on any list.

    Angela Walker: 40:29

    I slightly feel, and you're so humble, you're so humble, own it.

    Celia Chartres-Aris: 40:33

    My "syndrome kicks in all the time. I think like, oh, I think they've already got it wrong somewhere. Anyway, so the global diversity leaders list is a compilation of 100 leaders I'm going to use that word tentatively, because I definitely don't describe myself as a leader of individuals from around the world, whether they're HR executives, whether they're power and diversity, in whatever area it may be, and amplifying the voices of people who often don't have their voices listened to. So that's what those awards are. So it's very exciting and very humbled and very honored to have been featured alongside some incredible individual. You see Forbes 4.30 Under 30 on the list next to you and you think why am I here?

    Angela Walker: 41:18

    You're so humble. You're so humble and, on a personal note, you've had some wonderful news. You've just got married, haven't you? I did?

    Celia Chartres-Aris: 41:25

    I did. It was the most magical day and I feel very lucky, Very privileged, very lucky oh bless you.

    Angela Walker: 41:31

    Well, thank you so much for talking to us. I feel really emotional in lots of ways. I feel really inspired by you and all the things that you're fighting for and fighting against your disability and fighting for rights for people and I feel really angry, actually, on your behalf. Thank you for everything that you're doing for people with disabilities. I just think you are amazing and I want to talk to you again because I just want to keep up to date with all these things that you're fighting for.

    Celia Chartres-Aris: 42:03

    Thank you so much for having me on and thank you for being a vessel for people who don't often have their voices heard, to be heard, and it's so important that we cover that kind of spectrum of diversity inclusion. So thank you for having me on and thank you for the work that you do.

    Angela Walker: 42:19

    Thank you, Celia. I'm Angela Walker and I've been in conversation with disability advocate Celia Chartres-Arris. I hope you've enjoyed the show. For more information, check out my website, angelawalkareportscom, and do get in touch if you know someone who's inspirational or if there's a story you think is under-reported. Until next time, take care.

    #DisabilityRights #Inclusivity #Accessibility

    #InclusiveDesign #DisabilityAdvocate #Access2Funding

    #Legislation #PublicBuildings #Resilience

    #DisabledEntrepreneurs #CeliaChartresAris

    #FeedingTubeLife #DiversityandInclusion #GovernmentAdvisory

    #DisabilityAwareness #AccessibleSpaces #InclusivePolicy #ForbesFeature #DiscriminationAwareness #AccessDenied

    https://www.angelawalkerreports.com/

  • 20th August 2023

    What if you could better understand the complex world of dementia and discover ways to connect with your loved ones affected by it? In today's episode we meet Shirley Pearce, the CEO and founder of Understanding Dementia. A retired occupational therapist, Shirley's compassion, personal commitment and years of experience have led to the creation of a unique programme that reshapes traditional care approaches by focusing on enhancing the emotional wellbeing of dementia patients.

    We discuss the nature of dementia, its devastating effects and the tools offered by Shirley's programme to help for caregivers develop new skills. Shirley's valuable insights extend to real-life scenarios, like managing communication hurdles or finding strange items in the fridge, emphasising the importance of understanding human behaviour when caring for dementia patients. We also delve into her ABC programme, which is designed to minimise frustration and confusion for people with dementia and their families.

    This episode is a journey through the often misunderstood landscape of dementia care, filled with hope, compassion, and practical guidance. Whether you're a family member, healthcare professional, or someone dealing with dementia, you're bound to find this conversation both enlightening and empowering. Join us as we shed light on the complex world of dementia and explore how hope can be found after a diagnosis.

    ANGELA WALKER: 0:08

    More than a million people in the UK are living with dementia. The effect on people's lives can be devastating, confusing and frustrating, but how best can we help people affected and their families? My guest today is a retired occupational therapist who set up a special programme to help people with dementia and their families. Today I'm in conversation with Shirley Pierce, the CEO and founder of Understanding Dementia. Thank you so much for joining me, shirley. First of all, what exactly is dementia?

    SHIRLEY PEARCE: 0:43

    Dementia is a progressive neurological disorder. Progressive means that it gets worse over time. Neurological means that it affects the nerves carrying messages to or from or within the brain. Disorder means that it's not part of normal ageing. It's something different.

    ANGELA WALKER: 1:04

    Now, so many of our lives will be touched by dementia and obviously we want to do everything that we can to help people who are affected. What is it that made you come up with this new programme Understanding Dementia?

    SHIRLEY PEARCE: 1:17

    I had worked as an occupational therapist and before that as a student nurse and a care assistant, and I'd worked with a lot of people with dementia and I had been shocked at the lack of understanding among people, even professionals, even specialist professionals, and the way that people were treated when they had dementia and the way that they were talked about shocked me and I wanted to do something about it from way back, and I only recently had the opportunity to do that.

    ANGELA WALKER: 1:54

    So how does your programme differ from the way that people have traditionally been dealt with when they've got dementia?

    SHIRLEY PEARCE: 2:03

    Traditionally, it has been assumed that people with dementia are losing their intellect, that they can't converse in a normal way and that they are not really sensitive to what's going on around them and that it's not no big deal if they're not treated particularly well. More and more we're discovering that actually it's the reverse they're working more and more on feelings. Memory isn't storing the facts of what's happening, so much so they get more aware of feelings, so they become more sensitive to feelings, and so the way we treat them becomes even more important, not less important.

    ANGELA WALKER: 2:56

    So there's often this sort of sense of confusion for people who have dementia. It's almost like they can't seem to remember things properly. And what's happening in their brains at that time? And how does your programme help us to help them?

    SHIRLEY PEARCE: 3:14

    Right, I explain that for you and me, our brains are recording and storing the facts and the feelings of what's happening, so I have, as it were, a recording of all the facts leading up to this moment. I know why I'm sitting here having a conversation with you and I know why there's all this equipment around us. If I didn't have that information, it might be a bit disconcerting, at the very least. In dementia, more and more the facts are not being stored. They're being stored intermittently, and then less and less at this time goes on so that you can be living. I don't think that people with dementia live in the past. I think they live in the present. But whereas you and I make sense of the present by using the facts of the very recent past, people with dementia try and make sense of the present using whatever facts they have access to, which may be older facts or they may be irrelevant facts. So it's very much harder for them to make sense of what's going on.

    ANGELA WALKER: 4:38

    So are you saying that they're not really storing short term memories, they're not storing recent memories? Yeah, because we often hear this, don't we? That they've got an absolutely amazing memory of something that happened when they were like in their 20s, or holiday and a life event or something like that, but somebody might not remember that they've put the oven on or something. So how can we help people with these difficulties?

    SHIRLEY PEARCE: 5:07

    Well, first of all, by understanding that somebody who has a perfect call of that holiday when they were growing up. It's understandable to me because their memory was working so much better in those days, so the facts will be stored so much more clearly, and because they, if it was a happy memory, they might have referred back to it, and so the memory becomes really embedded over time so it's really accessible and easy for them to recall. Now, something like putting the oven on, something you do all the time and the memory of doing it this morning or yesterday or the day before can all merge in together. And when memory isn't storing the facts reliably, then that can all get muddled up or it can be not stored at all. The fact that you've just put the oven on may not have stored, and anything that hasn't been stored just isn't there. So it's not that so much that they don't remember is that it isn't there to be remembered. You can only remember something that's been stored in the first place.

    ANGELA WALKER: 6:26

    It's so interesting and, of course, it's really frustrating for the person who's got dementia, but it's also frustrating for the loved ones who are trying to help them. How can we help our loved ones who are going through this? I mean, what's the best way of almost like jogging their memory or helping them to be in the present?

    SHIRLEY PEARCE: 6:54

    Well, I don't actually try and do that even. I find that if you take the focus off trying to help them remember better and you concentrate on something else, which is their well-being, then you reduce the stress that they're under and the side effect of that is that all the processes within the brain work better when they're not under stress, because stress really interferes with memory storage and recall. So we concentrate on well-being, not in a kind of fluffy sense, but in a very specific sense. That was set out by psychologist Tom Kittwood years ago, who said that in order for us to experience well-being any of us we need four feelings. He described them as four global subjective states, but he meant feelings. So we need self-esteem, we need to know that it's okay to be me, we need a sense of agency or autonomy, a certain degree of choice and control, and we need a sense of social confidence. So we don't need to be the life and soul of the party, necessarily, but we need to be comfortable around other people. And we also need a sense of hope, and if any of one of those is under threat, then the others tend to crumble as well. They're a bit like four pillars holding up our well-being. So, as carers or supporters of somebody with dementia, we can be on the alert and we can be aware of those aspects of well-being, and if we can see one of them start to crumble, then we can do something about it before it gets to the point where people start talking about challenging behaviour, because I think if you get to that point, then somebody is under extreme stress.

    ANGELA WALKER: 9:19

    It's so interesting what you say about self-esteem. And if you're in a situation where you think, oh my goodness, I can't even believe that I've left my keys in the front door again. What's wrong with me? Why is this happening to me? That's frustrating and I can see how that would erode your self-esteem. And then if you have a relative who's trying to be helpful, going come on, mum, don't you remember? When we just came in, you're the one that opened the door. How did you leave the keys in the door? Blah, blah, blah. So what do you do in that situation if your loved one is the one who's left the keys in the door and you're trying to tell them that they've done it? Or how can you broach things with them without chipping away at their self-esteem and their confidence and so on?

    SHIRLEY PEARCE: 10:05

    Well, I think the key is in understanding what's going on, because once you realise that the fact of them leaving their key in the door probably didn't get stored, which is why they've done that If it was being stored, they wouldn't have made that mistake. So the fact that it hasn't been stored, once you understand that, then you're not going to be saying, come on, don't you remember? It's actually, don't you remember? Is very difficult thing to be asked, because clearly they haven't and that is bound to chip away at their self-esteem.

    ANGELA WALKER: 10:50

    And cause them to be frustrated and maybe a bit cross and angry. I mean, I would be. Yes, exactly. Let's talk about this sense of autonomy. I suppose people might be thinking well, how can I allow my dad to have autonomy when he might be doing things which could endanger him? So it's really like how do you get that balance between not kind of treating someone as a child and wrapping them in cotton wool and not letting them do anything in case they hurt themselves, and allowing them to go about their lives as best they can?

    SHIRLEY PEARCE: 11:31

    Yeah, well, all of these four feelings are feelings, they are senses. So you can engender a sense of autonomy by giving somebody a feeling of choice In a way that is different from the way you would do it for somebody who has full cognition, full command of their memory processes. I had an example at home. When we bought our house, we were given a choice of tiles for the bathroom. I didn't like any of them, but once I'd chosen one of them, well, it was your choice, but I didn't feel that I'd had a choice because I didn't like what I'd had to choose. And it's very easy for that kind of idea. We give somebody a choice, but actually sometimes it might be better if that choice wasn't available to them but we had given them a sense of some degree of choice and control, if that makes sense.

    ANGELA WALKER: 12:44

    Shirley, you mentioned this sense of hope. Dementia is progressive, isn't it? And I think people that are diagnosed and their families know that. The likelihood is this is as good as it gets, that they're probably going to progressively get worse. How can you instill a sense of hope in somebody who's got a degenerative condition like this?

    SHIRLEY PEARCE: 13:09

    It depends what you mean by it's going to get worse. Their memory function may well get a lot worse, and is likely to over time, but their general well-being doesn't have to. That's the key. If we concentrate on well-being, then memory can do what memory does, and it doesn't necessarily feel like the end of the world. The important thing is our relationships, and I have had people come through our course who have said that their relationship with a person they're supporting is so much better because they're not constantly trying to make them remember and trying to point out their mistakes all the time. They are relating to them on a much more personal level and much more supportive level, and so, in a sense, things aren't getting better.

    ANGELA WALKER: 14:13

    Talk me through your programme. How does it work for, say, I was coming to take part in your programme. What's the kind of format?

    SHIRLEY PEARCE: 14:21

    Well, we have a course of eight weeks for family carers and most of our courses are on Zoom. We started doing lockdown and that was all we had available to us. We now deliver courses on behalf of Working on Borough Council and we do some face-to-face courses, because not everybody is comfortable online, not everybody has access to the internet, but it takes the same format whether it's face-to-face or online. So we have eight sessions of about an hour and hour and a quarter and we we have a presentation, a very short presentation, an introductory one, in the first session and then we take one aspect of dementia each time and then we discuss it and we have questions and answers and we have discussion and then the person taking part will take away some new way of thinking, a new skill to practice, and they can go away and during that week they learn more by putting it into practice and then they can come back, talk about how they get on and learn the next step and over the period of the course they tell me that their mindset is starting to change and they are looking at things differently and understanding things differently, because so many people talk about dementia as if it's a thing and it's not very nice and we've all got to be terribly patient. But I think that if you're relying on patients as a 24-7 carer, the more you rely on it, the thinner it wears and eventually it wears out a new snap. But if you're relying on understanding, then the more you understand, the stronger that gets and the better you're able to understand and the more effective your support will be. So the courses are really aimed at changing the mindset. It's like changing the autopilot. We automatically tend to correct people and point out their mistakes, because that's what you do in normal life. Somebody makes a mistake, you point it out and you correct them because they want to get better. But in dementia that can be quite destructive. So once people are used to working in a different way, then that different way starts to become more natural, and so their instincts are sort of getting retrained so that when they get into a difficult situation that maybe even we haven't discussed on the course, they're not having to think oh now, what did they say I'm supposed to do? When this happens, I have to say that, and when they say this, I say that, but they've just said something completely different. I don't know what to do, because that wasn't covered when they're thinking in this new way, then they are getting more tuned into the person's feelings and the best thing to do or say is starting to become more natural so they can operate on instinct.

    ANGELA WALKER: 18:07

    So can you share with us maybe some of the tools that you give people to go away with when they take part in one of your courses?

    SHIRLEY PEARCE: 18:15

    We do a whole session on this whole business of wellbeing and then we start talking about the ways that we can help people, and there's a really simple ABC that we use as a guide, and the A is we avoid asking the person questions. If you're being quizzed, it kind of puts you on the spot, and if you can learn a way of not asking so many questions, then it makes it so much easier. Even a question like how are you? How many times have you asked somebody that and then, three quarters of an hour later, wish you hadn't asked, because they're still telling you. Or if somebody asks you and you're not sure why they're asking is this just a greeting? Are they wanting to know about some ongoing situation? If so, which one? My complicated love life or my that embarrassing medical problem? How much do they know already? How much do I want them to know All of that? If they can just say oh, how lovely to see you, you can save all of that.

    ANGELA WALKER: 19:30

    That's so interesting because it's a really automatic thing that we do all the time, isn't it? Oh, how are you? And sometimes we're not even really asking for any information, as you say. It's just like how are you? Yes, good, thanks. How are you? Yes, good. And on we go.

    SHIRLEY PEARCE: 19:43

    It's like how do you do kind of thing? Yes, that's so interesting.

    ANGELA WALKER: 19:48

    Something that I know does happen is that sometimes a partner may have passed away and the person who's got dementia might not remember that that's happened. And for other relatives, how do they deal with that? Should they keep on saying, oh sorry, mom, don't you remember Dad died last year? Or how should people handle that?

    SHIRLEY PEARCE: 20:16

    Well, I have been in that situation where I was with somebody whose husband had died and she suddenly turned to me and said oh, where's Reg? I knew he died and I had been at his funeral, and so had she, and I thought this is interesting. How am I going to handle that? So I did what I do a lot of the time, which is to play for time, and I just said, oh, that's interesting, wonder where he is. And she suddenly said, oh, I know he'll be playing golf. And so I said, oh, yes, oh, it's a lovely day for it. Oh, my husband plays too. And then, suddenly, out of the blue, we talked about that for a minute or two and suddenly, out of the blue, she said, oh, I do miss him since he's died. Now, if I had said, oh, he's died, that would have thrown her into grief, but she was kind of processing it for herself, and so I just went along with that and I said, oh, you must have loved him. And then she surprised me again, because she burst into a huge smile and said, oh, yes, he was the best. So not only would I have thrown her into grief if I'd said he died, but if I'd even said oh no, he's out on the golf course when she had been thinking I wonder whether he's still with us. Has he died? How embarrassing not to know whether your own husband is alive or dead.

    ANGELA WALKER: 22:17

    She might have been upset with you, so why did you say that he was playing golf when you knew he's died? Gosh, it's a bit of a minefield, isn't it?

    SHIRLEY PEARCE: 22:24

    It is a bit of a minefield and she would have been thinking is this some sort of conspiracy? Whereas I was not telling her. I was actually following along behind what she was saying. So in the conversation she was leading and I was following, and that's a much easier place to be.

    ANGELA WALKER: 22:47

    Let's look at another scenario, which is people putting things in weird places, the fridge, for example. What do you do if your loved one has put the remote control in the fridge? I'm just pulling this idea out of thin air. It happens. I mean, I've done it myself, you know, just out of tiredness. But if you have a relative who's got dementia and they are doing things like that, what do you do if you open the fridge and there's a pair of socks or something in there? Should you just take them out and just pretend that you never noticed? Or should you go oh, don't put them in there. Like, what should you do in that kind of scenario?

    SHIRLEY PEARCE: 23:27

    Well, I would come back to wellbeing. And it's not going to do the person any favours if you confront them with their mistake, because you're actually confronting them with evidence that their memory is not working and that's very, very painful. And if you do it in front of anybody else, then that's hideous because that's really embarrassing. If you're supporting their wellbeing, then it becomes less of an issue. And there's another charity I forget which one now that uses the phrase make it safe to forget. So if you make it okay these lapses and you don't draw attention to them, actually you're not making them more likely to happen again, because if you drive down somebody's self-esteem, then they are more likely to make those kinds of mistakes because they are under more stress.

    ANGELA WALKER: 24:36

    Now we've talked about how to deal with family members who've got dementia, but obviously people who've got dementia see a lot of medical professionals doctors. They might have to go into hospital for something that's completely unrelated. So say, they have a fall, they break their hip, they go into hospital. How can your training course help professional people who are dealing with people who've got dementia? They might not be dementia specialists themselves, it might just be that they have a patient who has got dementia. Is there something that they can learn from your course?

    SHIRLEY PEARCE: 25:13

    Yes, we do a separate course for health and care professionals, and dementia is so common that anybody working in health and social care is very likely to come across people with dementia, and they won't all have specialist training. One of the most interesting pieces of research that I have read was actually done on people who have gone into hospital, who happen to have dementia, but they've gone into something else, and it was looking at the phenomenon of refusal of care and why people suddenly will not go along with the care routine and they refuse it when somebody comes and tries to give them a wash and it causes all sorts of problems. But this was done by Dr K T Featherstone, who was not a clinician but she was a sociologist and she was looking at it from the point of view of normal human behavior. If you're in a confusing place and a complete stranger comes up to you and expects you to take your clothes off and starts doing intimate care well, hang on a minute. No, that's normal. And if you understand that and how vulnerable people feel and you understand about wellbeing, then you're going to handle those sort of situations very differently and you're going to start seeing the person more as a person and not as just a task to be done, and that makes a difference too.

    ANGELA WALKER: 27:08

    That makes perfect sense. But I guess you know, we know how under pressure hospitals are and if they're thinking I've got 10 elderly people on this ward, they all need washing, and to them it might be like, oh, why is Mrs Smith being so awkward, let's just get this done, kind of thing. It must be quite hard for the professionals even to take that space and think hang on a minute, I need to be a bit understanding here.

    SHIRLEY PEARCE: 27:39

    I think you also need to look at the priorities. Is having an all over wash every day the most important thing? That may be very controversial thing to say, but sometimes we need to look at the bigger picture and if somebody is in a state of wellbeing then they are more likely to go along with the request for a wash anyway. I stayed with a lady on one occasion I was doing live-in care and she desperately needed a wash. But she had assured me that the shower didn't work because she used to turn off all the lights at night and the shower isolated switch looked for all the world like a light switch, so that had got switched off too and she hadn't had a shower for months. And I had to deal with that in a different way and I said, oh, maybe we can have a little pumper session after breakfast and we can do each other's nails after our shower. And she had her shower because I was in my dressing gown, because I was living in, and she felt much less threatened by that and the fact that I was in my dressing gown made her more likely to concentrate on.

    ANGELA WALKER: 29:07

    So earlier on in the chat you mentioned about this ABC. Can you elaborate a bit more on that for us, Shirley?

    SHIRLEY PEARCE: 29:15

    Yes, we talked about the A, which is avoid asking questions, and that's not about just trying to avoid asking them, but finding alternatives. And then the B is being a buddy and really getting alongside a person and making a relationship in the moment with them, and that's much easier when there are just the two of you. When I was working with the lady I was staying with doing live-in care, I could be a buddy with her just the two of us very much more easily. But if somebody else came in at one point, district nurse arrived and if we had struck up a conversation the nurse and I had struck up a conversation it would have left the lady I was looking after out and, worse still, we could easily have found ourselves talking about her across her, and that's awful, that's not including her, that's talking across her, and it's very hard to cope with. So being a buddy is much easier when there are two of you, and so we talk about on the course ways to handle the situation where there's somebody else in the room, somebody else wanting to come into the conversation, and how you deal with that without causing the person any more problems and how do you deal with that then I mean say, for example, you have to take your loved one to the doctors.

    ANGELA WALKER: 31:04

    There's you, your mum, for example, and the doctor it's about mum's wellbeing. Mum's there. How do you deal with that? Because you could really easily slip into talking about mum with the doctor and that's quite infantilising, isn't it?

    SHIRLEY PEARCE: 31:21

    For a start, I would try and eliminate any of the conversations that are going to cause too much of a problem. I could write to the doctor beforehand and give any of the information that he's likely to be asking me in the session, so that I'm not having to talk across the person unnecessarily. You can write. Sometimes you can ring and have a conversation beforehand. Sometimes you can have a quick five minutes before or after, maybe while the person is in the loo. If the only time you have with the professional is when the person's there, it can be extremely difficult and sometimes I have resorted to turning to the person. If the professional has asked something that I think is a bit out of order, I might turn to the person and I say, well, it was an odd thing for them to say just then, and so I'm being a body with them in that moment. And then they're not feeling ganged up again, exactly, exactly. If there's a gang, then it needs to be the person's gang. I need to be in their gang. I don't want to be ganging up with anybody else.

    ANGELA WALKER: 32:52

    It all makes sense. It all makes sense actually when you think it through. It does, it does. And what about the C in your ABC?

    SHIRLEY PEARCE: 33:02

    Well, the C is cut out contradiction. So if, in that scenario, we were talking about where the lady was talking about, her husband, if I had said no, no, no, no, don't you understand? He's died. That can be contradiction and most of that is completely unnecessary and it's destructive. So I had an example when I was visiting somebody who looked out at the garden and he said oh, there's been any rain out there. The garden's looking very dry. If it doesn't rain soon, we'll have to water the garden. Now it was winter. It was hard to tell from inside that it was winter, because it was nice and warm that part of the garden. There was nothing growing. Apparently Everything looked dead. In another part of the garden that you couldn't see from his window, there were the snow drops coming up, which would have given a clue to the time of year. So I had a choice of what I could say. I could have said no, no, no, it's winter, with a subtext of you silly old man, you don't even know what time of year it is. What I did say was well, I just heard there's going to be rain later on, so I think we're going to be all right Now. There was rain forecast and there had been quite a lot of rain recently and the more rain forecast was not really good news because there had been floods forecast. But I wasn't going to tell him that because he'd lived by the river and the idea of flooding would have been a really bad thing for him, really bad news. I needed to convey the sense of good news, the sense of hope. Really he didn't need to be contradicted, there was no point. So I just gave him an answer that felt like good news.

    ANGELA WALKER: 35:28

    What can we do in a situation like I know? We should avoid asking questions. If someone's got dementia that's something that you mentioned. What about things like giving a choice over a meal, or would you like tea or coffee? How can you go about those everyday conversations without upsetting somebody?

    SHIRLEY PEARCE: 35:48

    Well, the tea and coffee one is a very common one, and if somebody asks me if I want a cup of, if I want a drink at all, then I'm likely to think oh, crumbs, am I about to go on a journey? Do I know where the loo is? Have I just had a cup? All of those things will go through my mind in a split second. Have they made me a cup before, and was it any good? So I will come out with an answer without really thinking it through. But for somebody with dementia, there's just more to process and it takes longer. And halfway through that processing some of the information might slip away and even the question itself might slip away. And you're left with the sense that somebody's standing in front of you saying, well, do you? And you're thinking, if I admit that I don't know what it is that they've asked, are they going to think I wasn't listening and all of that. So I could instead say, oh, I think it's time for a drink, I fancy a coffee. And they are more likely than because the situation is relaxed, I'm not stressing them they're more likely to express a preference and say, oh, can you make my tea?

    ANGELA WALKER: 37:21

    When you talk about it like that, you make it sound so easy. But we just have to get in the mindset of thinking how can I ask this question without directly questioning someone in a way that might feel like you know they're being interrogated? Do you want tea or coffee? Do you want milk? Do you want sugar? Do you want cream? Do you want a biscuit with it? It could be for someone who's got memory issues like quite confrontational, oh my goodness. But we've talked about so much. Shirley, thank you. Now I know that you've developed a booklet to help people through this maze, through this mind field of helping someone understand dementia. Tell me a little bit about your booklet and how people can get hold of it.

    SHIRLEY PEARCE: 38:10

    It's setting out this understanding of dementia in very simple terms so that anybody working in a dementia setting can pick it up very easily. Anybody who's working in the second language will find. It's not full of jargon, it's not full of acronyms, it's straightforward language. It's got some lovely cartoons.

    ANGELA WALKER: 38:42

    Yeah, the pictures are great because they illustrate the point in a fun way and that helps us to remember. Actually, do you want to talk us through one of the pictures? Maybe have you got a favourite.

    SHIRLEY PEARCE: 38:53

    Well, the caption for this one is questions may not get the answers you need, and there's a lovely drawing of a young man asking his, his uncle have you heard the cat? And his uncle saying oh yes, I've done that. And then you can see the cat with a little thought bubble saying, oh no, he hasn't. And then there's a second one there may be better ways to find out. And then there's a little picture of the cat and the unopened tin of cat food.

    ANGELA WALKER: 39:33

    Well, that's a really lovely example of one of the things in your book which I've read and I found it so interesting and full of information, so that's going to be a real asset to anybody. So how could someone get hold of a copy of that if they wanted to?

    SHIRLEY PEARCE: 39:49

    This book is being made available through our website. It's just £5 including UK postage.

    ANGELA WALKER: 39:58

    Perfect. And before we wrap up, I just want to say and how does it make you feel that you've come up with this course and you're helping people, surely, and that you're getting this feedback that it's changing people's lives in a positive way?

    SHIRLEY PEARCE: 40:11

    It's what I always wanted to do from the age of 18, when I had my very first job. While I was waiting for a place on a nursing course, I got a job in a care home as a care assistant and I thought I was so shocked by what I saw. I thought I must do something about this. And I was about to start nursing and I thought maybe I could specialise in older people eventually and do something that way. I wasn't quite sure how I was going to do it, but I wasn't able to finish my course. I injured my back and I had to leave the profession and I did something completely different for years. And then I came back into the health service as an occupational therapist years later and I found myself working with people with dementia. Because of the problems I'd had with my back, I couldn't work in the acute mental health or physical health sector, but I could work in the community with people with dementia and their families. So that suited me in that way and then I realised I was coming back to what I'd wanted to do all along and I learnt ways of working with people which were much more benign and much easier really than some of the conventional ways that really spurred me on to develop this Well, Shirley.

    ANGELA WALKER: 41:43

    Thank you so much for the work that you do to help people understand dementia and thank you very much for sharing with us today. Thank you very much. I'm journalist Angela Walker and today I've been in conversation with Shirley Pierce. I hope you've enjoyed the show. Please subscribe and share, and if you know someone who's inspirational or if there's a story that's under-reported that you think I should be covering, drop me a line through my website, AngelaWalkerReportscom. Until next time, take care.

  • 12th August 2023

    Water companies in the UK have been dumping ever-increasing amounts of sewage into our rivers and waterways. Now, a law suit could hit them where it hurts and cost them hundreds of millions of pounds. Law firm Leigh Day is leading a collective action accusing them of abusing their dominant position by over-charging customers.

    The action hinges on the allegation that water companies knowingly failed to report the number and extent of sewage discharges and were therefore allowed to charge customers more. The first claim has been issued against Severn Trent and further claims will be issued against Thames Water, United Utilities, Anglian Water, Yorkshire Water and Northumbrian Water. Zöe Mernick-Levene , a partner at law firm Leigh Day explains the case against them which is being brought by Professor Carolyn Roberts an environmental and water consultant.

    Ashley Smith from campaign group Windrush Against Sewage Pollution joins us to talk about his work and explain how mathematician Peter Hammond used AI to expose thousands of unnoticed spills.

    We delve into how this data is captured, scrutinized and the fact that just 1% of it is reviewed by the environment agency. We'll probe into why water companies are being secretive about data and the crucial impact of citizen scientists in pushing the case forward. We'll also be discussing the reports from dozens of elite triathletes who say they fell ill after competing in the World Championships in Sunderland's water and the response from Northumbria Water. Listen in as we scrutinise the statement issued by the Environment Agency and DEFRA .

    Brace yourself for a deep dive into the legal challenges faced by water companies for their pollution. Ashley unfolds the inception of Windrush Against Sewage Pollution and its efforts to expose the deteriorating condition of the River Windrush. Zöe uncovers their legal warfare using opt-out claims to make corporate giants rethink their actions.

    We'll also compare the water systems globally to the UK's, exploring how privatisation led to profits at the expense of infrastructure. Ending on a note of damages, we decipher how a tribunal would decide the overpayment for each customer.

    Angela Walker: 0:07

    Water companies have been pumping raw sewage into our rivers and waterways. It's killing wildlife and allegedly making people who swim outdoors sick. Now illegal claims have been issued against one of six UK water companies who are facing legal collective actions for allegedly abusing their dominant market position by underreporting the number of times they cause pollution incidents and overcharging customers as a result. I'm journalist, Angela Walker, and in my podcast I interview inspirational guests and discuss underreported issues. Today I'm in conversation with Zöe Mernick-Levene, a partner at law firm Leigh Day, which is leading the action, and Ashley Smith, the founder of campaign group Windrush Against Sewage Pollution. Ashley, thank you both so much for joining me. Ashley, I'll come to you in a moment, but first Zöe. I mean we all hear about water companies repeatedly discharging sewage into the waterways and I understand this is the first in a series of competition claims against six water companies. The first is against Severn Trent. What's the connection with this competition claims and sewage pollution?

    Zöe Mernick-Levene, Leigh Day: 1:24

    Thank you very much, Angie. It's lovely to be on talking to you about this very important issue and alongside Ashley Smith, who has been absolutely leading with what Professor Hammond and others this issue in the media for a long time now. So our claim looks at the sort of evidence that's been uncovered by Ashley and others and takes that and looks at the fact that these companies, all of our water companies and monopolies you don't get to choose who you buy your water from or who takes your sewage away and treats it, and they're under a whole raft of legal obligations and undertaking in regard to how they're meant to do their job and that's what we pay them for. So when you look at these companies who are consistently, we believe, on the evidence uncovered so far, misreporting the number of times that they pollute our waterways with raw and untreated sewage, so we have to take a step back and say is there something going on here? As well as the environmental harm and we believe it is we believe that competition rules which say that dominant companies and monopolies have, like, a special responsibility to their customers and they're not allowed to exploit customers and abuse their position of power over them in terms of pricing. So the way it works. Is that off what? Because their monopolies agrees pricing rules with each of these companies, and one of the pricing rules are about how many times they discharge raw and untreated sewage, in addition to the sort of legal requirements they agree with the EA. And when you look at this pricing regime, it has a feature that says that if companies perform better and that will mean they perform, they have fewer spills and discharges than they've been allowed for they get rewarded. And they get rewarded by being able to charge their customers higher prices. And if they do worse than they've agreed, they should be penalized. And that's done through allowing them a sort of smaller amount that they can charge their customers. So it directly connects into how much customers are charged. So our claim is an opt out claim on behalf of the millions of consumers who we say have overpaid because companies have not been reporting accurately to their regulator and therefore being sort of targeted with the penalties that they'd had agreed they would be if they didn't perform their environmental requirements.

    Angela Walker: 3:49

    Now I was talking to Water UK. They've not been able to put anyone forward for an actual interview, but they have issued this statement and it says "this highly speculative claim is entirely without merit. The regulator has confirmed over 99% of sewage works comply with their legal requirements. If companies fail to deliver on their commitments then customer bills are already adjusted accordingly and, ashley, you've been campaigning to raise awareness of sewage pollution. In fact, I've been with you and witnessed raw sewage being pumped into waterways on several occasions. I've seen sanitary towels being flushed out, toilet paper. Clearly the smell has been raw sewage. What do you think about this? They're saying it's highly speculative and entirely without merit.

    Ashley Smith, Windrush Against Sewage Pollution: 4:42

    Well, that's an interesting idea, isn't it? Because it's precisely about data analysis and declaring the data that companies like Severn Trent and United Utilities have been withholding to maintain their possibly to maintain their high status, because no one but the regulators can see and we know that the regulator, environment agency only takes 1% of the data that Professor Hammond will analyse, for example, and that's why his very granular analysis has been able to show the pollution that changed the assessment of the water companies from the rosy perspective that the environment agency was showing up until about 2020-21. There was then a dip in performance of the water companies, according to the agency. Well, there wasn't. Actually, there was the same performance by those companies, but they had been stripped bare of the gloss that had been applied by poor data analysis and a failure to analyse data by the regulators. So it's very interesting now to get behind that and to suggest that there's no merit to trying to reclaim money that looks like it's been tricked out of the bill payer is a ridiculous statement. Of course there's merit to that. That's just natural justice.

    Angela Walker: 6:03

    How exactly is this data reached? I mean, it must be tricky to quantify, to work out how much sewage is being discharged. So how is it recorded and how is it analysed? Because it sounds quite complicated to me.

    Ashley Smith, Windrush Against Sewage Pollution: 6:22

    Yeah, Peter Hammond is a mathematician. He's a data analyst who worked for the Big Data Institute at Oxford, so he was able to handle the huge volumes of data that were being sent out by water companies that show the flow of the water companies dealing with their outfalls from their sewage works. You've got the event duration monitors that show on off times most of the time for sewage bills, but he was able to identify when a spill happened by examining the profile of the flow data, and it initially applied artificial intelligence to identify that, and that was back in 2021. He published an academic paper in a recognised, respected journal that showed the use of artificial intelligence to identify a thousand thousand illegal spills that had not been picked up by the environment agency, and he went on to do a lot more, and that's because he bothers to do it. The data is there, but the regulators have never bothered to look and that's how they've managed to keep this illusion that the water companies were behaving themselves, despite what other people were actually observing with their eyes and ears that their rivers were being destroyed. They were seeing pollution events the regulators kept coming back to they're not breaking the law and the water companies relied upon that and they're still trying to rely upon that. But that's largely been stripped away by campaigners like Professor Hammond, like Jamie Woodward up in Manchester doing the microplastics analysis, identifying it in that way, and other groups like Surfers Against Sewage, who also publish data to show people when they shouldn't go in the water. So it's a strange affair really. You take this information, you take it to government and you expect that to be the answer, but of course it isn't. The government. All the government has done has made moves to protect shareholders, to make sure they're not exposed to heavy investment demands. So when we see Leigh Day and we see the, the action now being taken to stir things up and to start to rattle this comfortable arrangement where the bill payer, the captive bill payer, monopoly companies just has to keep paying, has got no choice, no competition, no one to go to when they're not happy, it's great to see that rattle, that this is how change is going to happen.

    Angela Walker: 8:50

    Zöe, tell me how did this action come about? I gather it's being brought by Professor Caroline Roberts, who's an environmental and water consultant, but just talk me through the process.

    Zöe Mernick-Levene, Leigh Day: 9:01

    So this is a opt-out claim, which means that we get to combine all the individual claims of each household and each household customer and combine it into one big aggregate claim. So, for example, against seven trends, we estimate that there are approximately eight million people who have paid directly or indirectly, through their rent, the water and sewage bills in the relevant period and that then there are damages or the amount that's due back to customers has been overpaid of about 330 million. And what this means is that everybody who has paid those bills is automatically included in the claim and they don't need to do anything. They don't need to come forward, they don't need to sign up or pay anything, and only when we win, or if we win at the end or have a settlement, then they come forward and claim the amount that's due to them. So this is really beneficial both for the individuals because people don't have to go around making legal agreements and, you know, sort of signing up to things years in advance but also really helpful for really making companies, such as all these water companies, think twice before they breach competition rules and environmental rules that can be connected to a competition claim like this. Our claim works with Professor Hammond and the analysis that he did. He and others have handed over the information requests, the environmental information request they've made over many years, and we've taken that data and we further analysed it and refined a method that we think will stand up to court scrutiny. And you know, more importantly, the defendants water companies are likely to, you know, throw everything they can at challenging this method. But we are confident because we have really really analysed everything Professor Hammond and Wasp and others have done and we, you know, believe that we've got a really great methodology that can withstand, you know, those challenges and we believe that when we get the data, the full data, in due course through the court process, that this will really shine a light on how bad it is and they will no longer be able to hide behind the suggestion that you know, oh, we have, you know you haven't been able to analyse it, or this data isn't quite right or this approach is not right. It is right, it's absolutely correct, and we believe that the evidence is is only going to be, you know, stronger as the case goes on.

    Angela Walker: 11:22

    So is it your belief that the water companies have had the data all along and are withholding it?

    Zöe Mernick-Levene, Leigh Day: 11:29

    They absolutely have had the data. They are required, as I think Ash mentioned, to hold on to very sort of detailed granular data. But what they have been handing over they don't need to hand over that level of granularity to the regulators. So they've been able to sort of know that it's. We believe they knew, or should have known, that they were spilling far more than they actually were, but when it came to sort of reporting to the regulators maybe they never even looked at that data. We just don't know what they did. But we believe that this will all come out in due course as a result of these claims. And I should say that many of the citizen scientists, like Ash and others have been requesting, through environmental information requests, this data over many years and it is, you know, that persistence and you know that sort of engagement with the level of detail that has allowed us to start building this case and hopefully we can take that work on.

    Angela Walker: 12:27

    I should bring in here that I did get in touch with the Environment Agency in Defra. They weren't able to put anybody forward for interview for this programme, but they've issued a statement. I'll read it out in full, as they've requested that I do. "As the environmental regulator of the water industry, we are unequivocal that polluting our rivers is unacceptable and that water companies need to deliver sustained improvements in water quality. We continue to work closely with the many people in the sector who want to see improvements. We're increasing the number of specialist staff who will focus solely on water companies and improving monitoring of sewage outflows. We also lead on environmental prosecutions in England, and the public should be reassured that serious misconduct will lead to criminal charges for the industry. Now, ash, we have seen criminal charges previously, haven't we? Why do you think that we've not seen more of them? When this data is, you say, available?

    Ashley Smith, Windrush Against Sewage Pollution: 13:33

    It's a real shame that you can't actually ask someone from the Environment Agency that question, because they've got a budget of £1.9 billion that they can't put anybody up to be challenged. That sort of statement does require absolute challenge because they're not regulating those companies effectively. They're a captured regulator. That's the economic theory of captured regulation, where the regulator starts to serve the interests of the industry because the industry is able to lobby that regulator. There's a revolving door of employment between it. During the trial of the big trial of Southern Water, the then director of operations of the Environment Agency towards the end of that trial got a job with Southern Water itself. The judge remarked that it was unusual that the directors had been absolutely implicated in knowledge of that offence but didn't appear in court. So this is captured regulation, is failed regulation. The public have no voice in it. The prosecutions that do happen. For example, Thames Water were fined £20 million in 2017. It's highly unusual for them to get through to a prosecution because the policy is to only prosecute the tiniest fraction. It sounds like it's sensible because you're prosecuting the most serious, but it means that most offences go completely unchallenged and therefore become just normal business. Now that £20 million, it turned out was for polluting over about four years and we worked it out that it was actually represented about 2.4% of the profit made during those years. So it was basically like processing Thames Water's money through PayPal and people were saying, well, that's a deterrent. Well, of course it wasn't. It was a confirmation that they'd made the right commercial decision pollute, get away with it, get caught a little bit from time to time, pay the odd big fine and just carry on because it's far cheaper than doing the job legally and properly, because they know they can get away with it with this type of regulation.

    Angela Walker: 15:42

    I should mention the Environment Agency said they can't comment on current criminal investigations or ongoing legal proceedings, although, to be fair, I invited them on prior to our knowledge about these legal proceedings, on another issue which I'd like to talk about now, which is about what happened in Sunderland over the weekend where around 60 world-class triathletes who came to this country to compete in the world triathlon. They all suffered. They reported diarrhoea and sickness after swimming and that's what we were originally coming onto this podcast to talk about. And now obviously we've had this development today about these legal proceedings. So let's talk about that a bit, if we can. We've had all these athletes coming here to compete. They're swimming in the water the next day. They've all got diarrhoea and sickness. But Northumbria Water said "we're concerned to hear participants have been ill and happy to support partners within investigation. We've had no discharges from our assets that might negatively impact water quality. Bathing waters were designated as excellent in the latest DEPHRACAP classifications. How can they say that the water quality has been classified as excellent? Well, we've got 60 athletes who are saying I swam in that water and now won't become very ill.

    Ashley Smith, Windrush Against Sewage Pollution: 17:07

    I spoke to surface against sewage, about bathing quality, and they regard the testing regime the Environment Agency carries out is incredibly sparse. It's very, very infrequent. It measures E coli and coliform bacteria, but if they find a high result, they're allowed to attribute it to an unusual event and discard it. So they're allowed to basically hide pollution events, which is most bizarre, isn't it really? And actually, with sewage discharge it doesn't have to be untreated sewage. That is a big carrier of bacteria. Treated effluent sewage effluent unless it's treated, but unless it's treated with ultraviolet or something to kill bacteria. Sewage effluent the so-called clean water that is returned to the environment after treatment, is loaded with coliform bacteria, chemicals, drugs, hormones. It's very far from the clean water that you often read on the website of OFWAT and the water companies. In fact, we can show you video of what that sometimes that water looks like, and it's actually a video that's often used in the news when people think they're talking about untreated sewage. It's treated. It's appalling. So it's a murky business that the water companies are quite again, quite disingenuous about.

    Angela Walker: 18:28

    We've talked a bit about money. Let's talk about the environmental effect. Because you've been monitoring this for such a long time, Ash, tell us when did you get started with Windrush against sewage pollution and what prompted you initially?

    Ashley Smith, Windrush Against Sewage Pollution: 18:45

    We started it as a group in 2018. And that had come about because I moved to live near to the River Windrush, which was one of those rivers that everybody talks about with great awe because of its history as a beautiful limestone river that people used to travel across the country to come to fish. It was, and we've got video of this, and you have to have this now because no one would believe it without the video. It was a wonderfully clear river. Even down in Witney, in fact, especially in Witney, there were shoals of big fish swimming around in great fronds of lovely greenweed. You go there today, as we've done, without you know, videoing the same places, and it's just a gray slab of water chugging along. There are still minnows and there's still some fish in there. There's still populations of fish hanging on, but the degradation is profound and depressing, and this is something that's mirrored across the country. Many people will tell you this too, and, of course now, if you're younger than about 20, you may never even have seen a river in good status. So it's a gradual moving down of the bar of expectation. Sometimes, you know, at some stage people just look at a lifeless piece of water and think it's always been like that.

    Angela Walker: 20:06

    That's very sad to think about, and I mean beaches are being shut. In Cornwall we're seeing signs up saying you know, don't swim in here, the water's dirty. Do you think these kind of events are creating more public awareness and, you know, an impetus to get something done?

    Ashley Smith, Windrush Against Sewage Pollution: 20:25

    Yeah, absolutely. You asked me why I set it up, boss, actually did it because I knew I had some dealings with the Environment Agency in Defra and their response just told me if you don't do something yourself with the community, nothing is going to change here. They were in complete denial, completely captured and just managing the decline of our water. So one of our key parts of our strategy has been to communicate and to use the media to get the truth out, because without the public, without the public knowing what's going on and turning this into a voting issue actually a national voting issue nothing will ever change. They will be given the worst possible service that these companies think they can get away with, because they are monopolies and regulation was meant to stop that. It never did and it never will. So that's why we did it, and every aspect of it whether it's for wild swimmers, whether it's for the environment, whether it's for bacteria or the death of fish it all has an aspect that attracts people's attention. And the other one, of course, is the money. Now, people have basically been scammed out of money Since the start of privatisation. This was identified really early on. There's been plenty of studies of it by very respected people like Professor David Hall, Professor Dieter Helm and others that will show that water industry did not bring investment. Privatisation did not bring investment. It just gave wealth equity firms the opportunity to use the annual harvest of billpayers' money as a way to extract the maximum for the shareholders. That's all they care about and that's their job. That's not a criticism. It's just to say that's not the model. That's not the model. It should be applied to a national resource.

    Angela Walker: 22:20

    The frustration of the general public is palpable, isn't it, when every year, we see the bonuses for water bosses in England. I mean, you know, we're looking at on average £100,000 in bonuses, despite missing targets. I've got figures here that 22 water bosses paid themselves £24.8 million. At the same time, we've got beaches which are being shut off with sign saying please stay out of the sea, people falling ill, wildlife is being killed off. So we're hearing that perhaps this is because of the way that it works with privatisation. But, Zöe, what's your view on that and what could be done about it?

    Zöe Mernick-Levene, Leigh Day: 23:14

    Well, I mean, you know, for our legal claim, we believe that we need to hit these companies. You know where they care and where it hurts and that is one of the actually stated aims of bringing these opt-out claims. It's meant to be a deterrent, like this is a legally approved kind of concept that these claims are so big. They take all these individual small amounts of £50, £40, and you combine it together and you get a massive, big amount that makes a company think. If I'm going to be liable potentially for that, maybe I really do have to think twice Because, as Ash has mentioned, you know, there are perhaps £20 million fines. There are, you know, maybe £100 million fines elsewhere by the regulator, but these are few and far between and you know it seems that you know these companies have just not been reporting accurately to the regulators as they are obliged to do. So you know whether we the correct kind of financial model of whether it's nationalised, whether it's state-owned, whether they're privatised, you know isn't directly part of our claim and you know we may have private views on what the answer is to that, but you know we believe that this claim really makes them think twice. These are large amounts. They will have to justify, you know, to their shareholders why they are having to pay out all of these, and we absolutely believe that. Off-what will not if we are found to have, if we win our case, we do not believe off what will allow them to recover this from customer bills. This will have to come from the parent companies, from the shareholders, from lower bonuses, from their own pocket. You know there is no way that that's going to be an acceptable outcome. How do you?

    Angela Walker: 24:48

    Yeah, I mean, that's what you know the public is going to be concerned about because we get this in the hospitals, don't we? They get fined for doing this and you know they are doing a bad job, or for missing targets, and you know, at the end of the day, it's the people that end up paying. How could it be guaranteed that it's not just going to be tagged onto our bills?

    Zöe Mernick-Levene, Leigh Day: 25:10

    The courts in this country believe that they have been abusing competition law by overcharging their customers, because each of those companies has to agree with off-what how they manage their pricing and what they're allowed to charge customers. You know there would be a humongous pressure and I'm sure off-what wouldn't do it anyway but there would also be a, you know, judicial and societal pressure that they would not be allowed to just recover that through their bills. So what that will mean is lower returns to their shareholders or no returns. It will mean shareholders potentially putting in money, as they did in the southern and or it'll meet the parent companies who are also suing alongside the company that you know provides the water to you sort of stumping up for that cash. So you know we'll be making that very clear.

    Angela Walker: 25:55

    It's really unfortunate that nobody from any of the water companies I approached was available for comment on this program. What I will say is that something that they maintain is that we've got a Victorian sewage network, which means that rainwater and sewage go through the same pipes, and this means it's quite difficult when there's heavy rain. What do you think about this defence of all? We've got a really aging sewage network. It's not our fault, kind of thing, Ash.

    Ashley Smith, Windrush Against Sewage Pollution: 26:25

    Well, I think it's absolute nonsense actually, and I think when we look at the detail of that, there is very little. You've only got to look at Google Earth actually to look at how many, how much development took place post-war. Most sewers, most sewage assets are much more recent than that. Now, if they tend to blame the network itself and make it sound like that's a very difficult thing to deal with, even if it was, they've had it for 30 years and all it's done is got 30 years older. They've never fixed it. But there is the kind of suggestion there that it's the network method of dealing with two types of water rainwater and sewage together. Well, if that's been a bad idea, why have they perpetuated it over the last 33 years? And why are they still charging customers to do that? They charge for surface water drainage as well. So I've no time for that at all. That's just an illusion. It's like blaming the Romans for traffic on the M25 on a Friday afternoon.

    Angela Walker: 27:27

    There's another aspect that I'd like to talk about just slightly, which is, you know, we're also told that there's a huge demand for new housing. How can we have these new houses when the sewage network that we have can't support the existing housing developments? And this is really interesting because there are plans for a new housing development in a place called Ascot under whichwood, which is an Oxfordshire. And tell us about what's going on there, ash, because people there are saying how can you put new houses here when you can't deal with the sewage from the existing ones?

    Ashley Smith, Windrush Against Sewage Pollution: 28:08

    Yeah, for many years water companies and the Environment Agency have just nodded through developments like that and said, yes, we can handle that, don't worry about it. And what they meant was, yes, we can handle the extra connection fee and the extra bills, but we won't bother to do anything about it because we know we can get away with it. So quite recently Wasp engaged with the local council, west Oxfordshire District Council, the councillors and the officers, the planning officers, and had a discussion about how the planners can take the word of the water industry now under legal guidance. But they don't have to and they can accept actually contrary and accurate information which we've now started to provide that shows that water companies are acting illegally at a sewage works. The sewage works cannot function legally, so to add extra housing to that before it's fixed would be entirely wrong and, we think, illegal. So conditions are being applied and I have to say that Thames Ward have actually been quite cooperative and it's not to say that they, you know, the last time around with Ascot they forgot to make this point and we had to remind them. But they have generally been quite cooperative about it and have recognised it and have applied for something called Grampian conditions to planning, which are conditions on something that's outside of the actual thing that's being built, so something to do with the net, the infrastructure or similar and that is about the condition that the sewage works have to be upgraded before these houses will be occupied. Again, developers tend to ignore these sort of things and occupy them anyway, and that's another flaw in the system. But we're making steps towards making it much more difficult to overload already broken systems, because that ultimately and I have to bring it forward a little bit here, because we hear about people getting sick like they did up with the triathlons it's simply a matter of time before somebody dies from a sewage related illness. People get very, very sick. That's just a matter of luck. That hasn't been worse, could already have been worse, but when that day comes, there will be a coroner's inquiry into it and then some serious questions will have to be asked about the people who let these risks be continued and actually made worse in terms of public health risk. Of course, then we'll have all of this. Lessons had to be learned, blah, blah, blah. But people know what those lessons are now and they are taking some serious chances People in authority, in water companies and in the regulators and in the local authorities, and the local authorities are waking up to that now.

    Angela Walker: 30:48

    That's an interesting point you make, because with the triathlons we're talking about about 60 people who are extremely fit and healthy who have succumbed to some kind of illness that they say they contracted from the water. If they were small children swimming in there, or elderly people or people who were not particularly fit and healthy, who knows what the outcome of ingesting this kind of bacteria might have been. But what I'm thinking about, what I'm wondering about really, is what goes on in other countries. Zöe, do you know what kind of sewage networks other companies have, and have we seen any kind of similar legal action as to your action that you're taking? Is there a precedent for that kind of action anywhere else that we know of?

    Zöe Mernick-Levene, Leigh Day: 31:38

    Most other countries, certainly in Europe, did not think it was a good idea to hand away their essential utilities, like water and others, to a disparate group of profit maximizing companies. Other countries have my understanding is far better on average water quality in their rivers and lakes, certainly countries like Germany and Switzerland. I think there are in some places in Germany requirements that the local mayor must go and bathe and swim in rivers to prove how wonderful it is, and they will drink the water from the rivers they will swim in. That's not to say there aren't issues in other countries. I'm sure there are also pressures and issues, but it feels like, and I'm pretty sure, that England is one of the absolute worst in Europe, certainly, if not in the world. I think that it comes back down to the question of when we think about this for our claim. Whatever the system is, it is clear that these companies were required under the rules, as they are now, to be honest with their regulator and self-report the number of pollution incidents. Whatever the system is and the wider system. That does not get away from the fact that they were already obliged to report these accurately and that this has led to overcharge for normal householders who have absolutely no choice but to pay these bills.

    Angela Walker: 33:12

    DEFRA have said they've got an ambitious plan for water which sets out increased investment and they've confirmed 1.1 billion in new accelerated investment to tackle storm overflows. Ash, is that going to help? I mean going forward.

    Ashley Smith, Windrush Against Sewage Pollution: 33:29

    Well, earlier in the year they admitted that they'd under-invested by about 10 billion and that they were going to bring that 10 billion pounds in. But guess what? It wasn't going to be the shareholders that were going to pay it, it was going to be the customer. Yet again, 1.1 billion with the sort of numbers that we see water companies claiming to need to spend to do very simple pieces of work doesn't go very far at all. They talk about 56 billion being the requirement over the next 25 years, when they've taken out 72 billion while allegedly investing 160 of our money. So effectively, they've charged us 45 pence for every pound of our money that they've spent on, not something that isn't just taking it away, something in the infrastructure. But you won't really believe that of what the economic regulator has no idea what that money was spent on. We've had that long conversation with Off-Broad to chief executive level. They don't know. They don't audit what water companies do. They just know how much money they spent at the end of the year and that, compared to what they thought they would need to spend, it's murky, it's beyond murky. It's so broken. It's so hard to put this across to the public because it sounds ridiculous that we're in this state in the 21st century, in the developed world, after 33 years of privatisation. It is this much of a shambles. It's really hard for people to grasp that the privatisation has just been used as an ATM for funds from the government of China, the Abu Dhabi wealth fund, the Canadian pension fund, the list goes on. People that don't really care about our environment, frankly.

    Angela Walker: 35:19

    Zöe, final word to you, I think. Where does this legal claim go? Next, what is going to happen?

    Zöe Mernick-Levene, Leigh Day: 35:27

    So we have started issuing the claims against. We've started with Seventh Trent and we'll be issuing another five claims over the coming months against Thames Water, united Utilities, anglian Water, northumbrian Water and Yorkshire Water and we will be bringing those claims and we hope within the next sort of six months to a year we will have a case before the Court of Appeals tribunal where they will look at our case and decide whether we can proceed. They will look at Professor Caroline Roberts and decide whether she's appropriate to represent all the millions of people who we say have overpaid to these water companies. And then we will go through stages such as getting the data from the water companies and then we will be analysing that data in detail to show exactly how many spills we believe on our methodology, based on the work of others such as Ash and Wasp, have done initially, and we will be taking that and analysing it and saying you know these are how many spills they've done. Ultimately, if we're successful on that, the tribunal will award what they call damages, so that's the amount each person has overpaid and that will be done on a global amount and the water companies will have to pay over the total amount and at that point, anybody who is part of the claim. So if you're a customer of any of these six water companies, you will come forward and claim your damages and get your compensation. So your listeners, they don't need to do anything. They can visit our website, which is mywatercasecouk, and get more information, but they only need to sort of sign up and come forward at the end when we have been successful.

    Angela Walker: 37:12

    Zöe Ash. Thanks for joining me.

    Ashley Smith, Windrush Against Sewage Pollution: 37:14

    Thank you.

    Angela Walker: 37:16

    I'm Angela Walker and I've been in conversation with Zöe Murnick-Lavine from Law Firm Lee Day and Ashley Smith from Windrush against Sewage Pollution. I hope you've enjoyed the show. Please subscribe and share so we can spread the word, and if you know someone who's inspirational or if there's a story you think is under reported, drop me a line through my website, angelawalkerreportscom. Until next time, take care.

    #WaterPollutionUK #SewageScandal #EnvironmentalJustice #WaterwayAbuse #LegalAction #CorporateAccountability #PollutionLawsuit #SewageDischarge #RiversInDanger #EnvironmentalImpact #CitizenScientists #AIExposesPollution #CleanWaterRights #CorporateMisconduct #TransparencyMatters #RiverHealth #WaterwayProtection #PrivatizationEffects #GlobalWaterSystems #PollutionConsequences #LegalChallenges #InfrastructureImpact #CorporateResponsibility #SustainabilityMatters #PollutionAwareness #EnvironmentalAdvocacy

    Description text goes here

  • 6th August 2023

    Hundreds of deaths from epilepsy could be prevented every year if the condition was managed properly - according to the founder of a British charity.

    In the UK, at least 1,000 people with epilepsy die each year. In this powerful and informative podcast, journalist Angela Walker sits down with Jane Hanna OBE from SUDEP Action, who says many of these deaths could be prevented if changes were made in by the NHS, in local healthcare management and if care for the the condition was properly funded by the government.

    Having lost her partner to sudden death in 1990, Jane is passionate about preventing such tragedies and shedding light on the often under-reported issue of sudden unexpected death in epilepsy .

    Jane shares her personal experience and reveals that every week, around 21 families face the same devastating loss. SUDEP occurs when an individual diagnosed with epilepsy or experiencing seizure-related episodes suddenly passes away, usually during sleep, with no prior warning signs. Angela and Jane delve deeper into the risk factors associated with SUDEP and discuss the importance of raising awareness among medical professionals and the public.

    The discussion also explores the challenges faced by the medical community in managing epilepsy cases and calls for a change in protocols to prioritise early diagnosis and intervention. Jane explains about the SUDEP app which can help patients and medics manage the condition better.

    The podcast delves into the alarming rise in maternal deaths related to epilepsy and discusses the potential link with certain antiseizure medications. Jane highlights the importance of specialized communication and counselling for pregnant women with epilepsy,.

    Join Angela Walker and Jane Hanna as they bring this critical issue to the forefront, sharing inspiring stories and insights from individuals and families impacted by epilepsy. Through awareness, understanding, and collaborative efforts, they believe that many of these heart-wrenching deaths can be prevented, paving the way for a safer future for those living with epilepsy.

    Angela Walker: 0:07

    At least 1,000 people in the UK with epilepsy die every year, many of them young people. Half of them die suddenly and unexpectedly and no other cause can be found. My guest today says many of these deaths could and should be prevented. I'm journalist, angela Walker, and in this podcast I talk to inspirational people and discuss under reported issues. My guest today founded a charity after the sudden death of her partner in 1990. She was determined to reduce the number of deaths from epilepsy. Her name is Jane Hanna. Jane, thank you for joining me, thank you, thank you for this opportunity, angie, no problem at all. It's great to talk to you. We've all heard of epilepsy, but sudden, unexpected death in epilepsy isn't something we hear about very often. Can you tell us about that?

    Jane Hanna OBE: 1:03

    Yes, Sadly, I have personal experience of it but you know every week there are at least 21 families who share this experience. It's really where someone who has been diagnosed with epilepsy or has experienced sort of seizure related episodes which are subsequently diagnosed as epilepsy, die out of the blue. Usually this happens at night. Usually the person's being completely appears very well sort of the day before or in the lead up to the death but they die suddenly and it's obviously a complete and utter devastating shock. I think any parent will know the fear of a caught death and in a sense the epilepsy related deaths, the Sudap deaths, are like that in the sense of just that traumatic suddenness of the person no longer sort of there. The Sudap which has been worked on for many years now, that will be put down, should be put down sort of where there is an investigation after the death which essentially rules out other causes, so usually will rule out any cardiac related cause. Essentially it's where the post mortem comes back and the person has really just had epilepsy and quite often there will have been some seizures, maybe one in the year before or maybe many more in the lead up to the death, and that's when the death will be put down as sudden, unexpected death and epilepsy.

    Angela Walker: 3:04

    When we say people are dying in the night, do you mean that they would have seizure in the night and then die as a result of that, or are they literally passing away in their sleep?

    Jane Hanna OBE: 3:18

    Well, really, it is a passing away in their sleep and the person who died will not have been aware, and that's really important for families to know. There has been a big study done across the world where these deaths have been witnessed, sort of on videotelometry units in hospitals, and so what we know is that there is a cardiac respiratory mechanism which leads sort of up to the death. The deaths are associated with seizures. So, yes, the deaths are linked to seizures, but it does not need to actually. You don't need to have actually seen, in a way, the evidence of a seizure. You don't need to have the physical markers of the seizure necessarily, because we also know, for example, from these videotelometry units, that sometimes people have silent seizures and the recordings have been able to pick those up. So, for example, someone who has a type of seizure generalized chronic seizure someone who will have had one of those seizures in the 12 months before the death, will be 27 times more at risk of sudden unexpected death and epilepsy. So there's this strong association with seizures, but many of these deaths are unwitnessed.

    Angela Walker: 4:57

    One minute we'll talk about preventative measures that people with epilepsy can and should be taking and some guidance for that. But first of all, I mean you set up SUDEP Action. It was by a different name then, wasn't it? But following your own loss, would you tell us about that, jane?

    Jane Hanna OBE: 5:19

    Yeah, my first partner, alan, was a young lawyer. He was a keen sportsman and in the seven months before he died his first episode was actually he was driving his car down the A34 to Winchester and he was triggered by some flashing the trees sunlight in the trees and that was his first episode and his car just flipped over because he actually had a seizure and he ended up in A&E and after that he had four seizures in total. He came out of the accident unscathed actually, but he did go on to have these four seizures and on the last seizure he died in the night. But really, when he went to the doctors at the time, when he saw the GP and then eventually saw a specialist, and it was very much, you know, this was something not to be worried about at all. No risks were mentioned and really he was discharged, actually while he was still not seizure free from the specialist. However, we had learnt to live, I suppose, with okay, this is okay. But then when he died, it was a total, utter, devastating sort of shock and when I rang, I rang, you know organisations, I tried to find out you know sort of how could this have happened? And I was actually told that people couldn't die from epilepsy. And that was the beginning of my journey, really, because I realised that these deaths weren't visible at all. There was no recognition to them even happening.

    Angela Walker: 7:12

    So that was quite some time ago, and you've carried on with your work for SUDEP Action. How are things now? Because your partner's death was in 1990, you would have thought things would have come a long way since then. What are your concerns about sudden death in epilepsy now then?

    Jane Hanna OBE: 7:34

    I think the you know after 30 years I think it's common really with lots of causes, isn't it? And movements. You know that it takes decades to actually feed through to the kind of changes that will actually sort of stop lives and you learn about all the barriers that are put in the way of actually the actions happening to stop the loss of life. And so, in terms of how things are now, we knew before the pandemic that epilepsy deaths, in fact all deaths from neurology, were rising before the pandemic when all other deaths were actually reducing. And we know from the evidence that with epilepsy it was the young deaths. These are very, very premature deaths. They're young people. And we also know that people are dying three times more at risk in deprived communities. We also know that you know we've had a doubling of maternal deaths, a really starking statistic that you know the national surveillance body's never seen before that kind of doubling of a trend of deaths in mums and their unborn, which is really concerning. And we're also seeing that people with learning disability and epilepsy are dying 10 years younger than people learning disability with any other comorbidity and it's a leading cause of death in people with autism. So I suppose it's hopeful in a sense that we have those statistics, because when I started 30 years ago and I joined arms with four other women who founded the charity, we had nothing, we had no knowledge, we had a world that didn't even give any visibility at all to these deaths. So now actually we have all the statistics. Really, we need actually to show that there is a supreme public health inequality here, there is a systemic inequality, and that the worst case scenario of that is that we have at least 21 people dying each week who are still in the hospital, and I've learned that really, until the officialdom and until the media and the public sort of wake up to this, that the dust will continue to happen. So in a sense it's in one way, quite depressing. But there is something which is about bearing witness. Epilepsy has been a very discriminated against condition for ever since it was recognised back in the time of the Greeks. It's one of the oldest conditions known to us and yet it is one of the most neglected conditions. So the community is very well. It's very resilient in a sense, because the community has come through gross discriminations over the years and it's only in recent years that people with epilepsy have been accorded basic human rights.

    Angela Walker: 11:37

    Do we know what's going on in somebody's brain when they have an epileptic seizure?

    Jane Hanna OBE: 11:42

    Yeah, it's really really straightforward actually. I mean, you sort of have a it's a bit a little bit of electricity that goes off in the brain, so it'll happen to one in 20 of us in our lifetime. Just a little bit of chemistry in the brain that sparks off, and depending where it sparks off in the brain will depend, in a way, what your body does. So there are over 40, well over 40 different types of seizures and epilepsies, and they range from where someone might look like they're in a daydream and to the example of the seizure where the whole body is convulsing, because it's a generalised seizure across the brain, so the whole body convulses. The person will fall down and be unconscious, and I suppose that's the type of seizure that people are most familiar with. But there are all sorts of different seizures, and so that's why it's really important that people are able to get the attention they need if they have a seizure, so the right diagnosis can be given and the right treatment can be given and actually they can get on with their lives.

    Angela Walker: 13:09

    And I know that you're concerned about the way that the medical community are dealing with epilepsy. What are your concerns about that?

    Jane Hanna OBE: 13:21

    I've always. Our organisation could not have founded without champion researchers and clinicians who came alongside to say this was a thing and actually we need to define SUDA, we need to do the research, we need to know the risk factors and we need then to do the interventions to save people. So we have very strong relationships with clinical and research teams. There has, however, one would have to say that there has been a cultural attitude towards epilepsy and that whilst that is changing, that has changed dramatically since I've been involved, but we're still not quite in the place. That other conditions are in terms of if you have asthma, if you have diabetes, if you have these well-established conditions in the community, you will actually be seen by somebody who in the community, who will check in on you and you will be given information about the condition, about the risks and actually what you can do to help keep safe and be well. We haven't got there yet. We haven't got there yet for epilepsy.

    Angela Walker: 15:00

    So you're talking really about management of the condition from the sounds of it. So talk me through it. What happens at the moment if somebody's diagnosed as having epilepsy? What's the kind of? How are they managed in the medical community?

    Jane Hanna OBE: 15:19

    Okay, well, if we start with the UK and actually just think about someone first who has a seizure that's suspected as being potentially epilepsy, well I know, for example, with a lot of the colleagues I work with, that that person might wait 12 months to actually be referred for a diagnosis. So that would be the first thing that we really need to sort out, because, you know, we wouldn't do that for a heart attack, we wouldn't do that for a stroke.

    Angela Walker: 15:50

    You could have multiple seizures in that 12 month period.

    Jane Hanna OBE: 15:53

    Yeah, you could die and actually that's what's happened through the pandemic. So we've been alongside families whether deaths have happened while they're waiting to be diagnosed. So that is a real concern that we have to increase the workforce for people with epilepsy. There needed to be a work plan decades ago and we need to catch up with that, and epilepsy needs to be included in the government's work on major conditions.

    Angela Walker: 16:31

    Who's most at risk from sudden death, from epilepsy?

    Jane Hanna OBE: 16:36

    We have a Sudden Pansesia Safety Checklist and a Nepsimon app which include the latest science. It sort of brings the expertise to the tip of knowledge for any professional working with people with epilepsy and also for people with epilepsy and their families. We have anyone over 16 and it's young adults who are most at risk of Sudden can access this information directly and we're looking at risk factors like what type of epilepsy do you have? Do you experience generalized tonic-clonic seizures? Those types of seizures do carry a heightened risk of Sudden. If someone's experiencing seizures which don't involve convulsions, then they're likely their conversation with their doctor is actually going to be. Actually, there is no risk If you're having dangerous types of seizures. These are the people who need the urgent attention and support in order to keep safe. If people are having nocturnal seizures, then those nighttime seizures also increase your risk. So there are things you can do. There are ways to keep safe and to keep well, but it can only happen if these risks are actually recognized. If someone is going into accident in emergency. So presentation accident emergency is a risk factor. We know that from the population-based research we've done. If somebody's mental health is suffering, you know someone's experiencing depression, anxiety.

    Angela Walker: 18:37

    So it sounds like we need to be understanding the risks, but also maybe there needs to be a change in protocol. If somebody has a seizure, they go to A&E. What should happen then, do you think?

    Jane Hanna OBE: 18:52

    Yeah, well, there's been a really big report that we called for and we've been part of the National Confidential Inquiry into people with epilepsy presenting to accident emergency and it really found that there was no system. So people were going into accident emergency and then they were leaving accident emergency and in a lot of places risk was not recognized and was not been managed and it wasn't going anywhere and it wasn't being picked up. So what we really need is for the local NHS and the local social care to include epilepsy in its strategic plans. So there's a lot of local systems that have been working on what gets included, and so we want epilepsy included as as this poorly served community and where it makes huge sense because we really, if we can, seizures are a major reason why people go into A&E, so why don't we keep them out of A&E and actually sort of help people and support them in the community? To help the local NHS do that. We need the government also to recognize that epilepsy should be included in long-term conditions. Really, neurology should be included. We shouldn't just be concerned about the neck down. We should be concerned as a society about, you know, conditions that affect our brain as well, and epilepsy is the one that perhaps presents the most acutely in terms of sudden death and is particularly impacting these, these young deaths. So we need the system to recognize and we need it to connect to connect with the medical teams, to connect with the patient sector, the voluntary sector, connect with our organization, because if we connected everything up we would be able to do amazing things and actually the voluntary sector has got a huge amount to give and really to help people because we've got the understanding of lived experience. Within our voluntary sector we're able to do co-production, which actually means that people living with the condition and their families have their needs and their concerns identified and worked with. But they can't do it without the expertise. We need the expertise of the doctors, we need the pharmacists to achieve peace, just to be aware of risk. They don't need to know all the ins and outs of epilepsy that's impossible but they need to know enough about is somebody at risk? And do I need to escalate this?

    Angela Walker: 21:38

    But you know, I would always have assumed that medical professionals would have a basic understanding of epilepsy and the risk. So are you saying that that's not the case?

    Jane Hanna OBE: 21:50

    Not every doctor that would be trained would not have that training on SUDAP and risk. And the same with pharmacy who are managing drugs and helping patients with medications which is the first line of defence against SUDAP they would also not have that training. So this is really where we need the safety net of knowledge, and it's very difficult to suddenly train everybody, and it's also very difficult to help professionals to keep particular things in mind because, particularly in the community, they're dealing with everything, aren't they? They're dealing with every single health condition. So that's why we've innovated the working with research and evidence and working with people with epilepsy. We've developed digital solutions, so the Epsomal app, for example. You don't need to remember. All you need to do is actually look at the checklist, ask the patient use the app, suggest the patient uses the app and that's it. It's actually quite simple in terms of that awareness of risk. Then the rest of it follows, because then whatever each person needs is going to be different, but the system will be able to at least respond to that, because they're not being the dark, and that's what we want to change.

    Angela Walker: 23:28

    The app sounds useful because it means that it sounds like medics wouldn't have to have a great deal of training. They would just need to know that they need to refer to this app in the circumstances of dealing with someone with epilepsy or someone who's haven't had a seizure, so that sounds like a good step forward. Does it gather information as well? The app does it help to give you information about how many people are having seizures and so forth?

    Jane Hanna OBE: 23:59

    Yes. So there are 5,000 people registered with the app and they've consented and because of that we've been able to do research with 2,300 women, for example, who are using the app to sort of better understand their understanding of information, their understanding of the communications that they need in order to make the choices that are vital to them in their care. So there's huge potential with the app and with the checklist. The checklist is embedded in GP systems already, most of them so they can just use it. We've managed to do that through the pandemic. So these solutions are really important and they're really a gift. They're a gift from all the bereaved families. So these developments have been funded over the years by really the families who don't want other families to be in the same position that they are and to enable people to have choices. So it's a not-for-profit app, but it's actually recommended by NHS Right Care, it's recommended by Embrace, who've looked at all the maternal deaths. It's been sort of recommended with the learning disability deaths. So it's not everything. It's just a little bit of a contribution to lift awareness so that when the person is in front of the doctor or the pharmacist or whoever, they can just show the wheel and say, ok, well, this bit's out of kilter or this bit's out of kilter, how are you going to help me get this help? Because sometimes it might not be to go to a neurologist, it might be actually. They need the help of the mental health support team. It's about where they need to go next and that's the bit that can help. We've just had a major investment in the app. So there was a fantastic family who cycled from London to Ackle on the west coast of Ireland. They were near retirement, never cycled before, did it last summer with 21 of their friends and they raised a really significant amount of money, so that we're actually now able to work on Phase 2 of the app to make it even more accessible and useful to all the people that use it, and that will also enable us to do really valuable research.

    Angela Walker: 26:55

    That's great news. Tell me a little bit more about this worrying rise in maternal death. Give me some figures and also tell me what you think is behind it, because I know you've got concerns about a particular antiseasure medication and its link with women not taking their medication. Tell me a bit about that.

    Jane Hanna OBE: 27:19

    So the maternal deaths doubled, so that in the period 2016 to 2018 there were 19 deaths of women and the National Surveillance Report was very clear that in all these deaths there were major medicines issues and there were women who'd stopped their medication. There were women on substantially reduced medications and the Embrace Report itself sort of highlighted a concern about and recommended that women must be given specialised communications, counselling about risk, and it was in that context that they sort of recommend the use of the app Sudapakshan. We have a death register, not just Sudap but all epilepsy related deaths, and we have reports from over a thousand families, detailed reports, and 19 of the reports we have since 2016 are in women who've died during pregnancy with their unborn. So we're about to sort of publish the research on those women. We know from working on deaths, so every year we work on about 77 inquests every year and we know from that work individual deaths and how women have not been accessing that information about Sudap, that person-centered information about what risks there are and the risk to the unborn, because clearly there's a risk to the unborn and that is really concerning because if you don't.

    Angela Walker: 29:33

    Why aren't women getting this information?

    Jane Hanna OBE: 29:38

    Well, it's also the case that women are not not all women are getting the information about the side effects of medicines as well, and if you look across the country, there's just not the resources that have been put into preconception counselling and sort of ongoing counselling. So we get back to that problem that I was talking about at the start, which is it's a poorly served community which has not had the resources that it needs, and so that makes it difficult to systematically make sure that every single woman would get that information about their condition, about the risks of that condition, about their options what are your best options and what are your choices and that, and as medicine is the first line of defence against seizures and against deaths and get it going into A and B it just it's obviously critical that that information is there alongside all the information about medicines and side effects. And of course we do know with women, you know, and if we look at a particular drug, sort of valparate, we know that valparate, you know, has significant risks of harm to the unborn and so it's not. This is not an easy thing, but however, we also know that valparate is the most effective drug we have for women who have generalised tonic-clonic seizures that are the most dangerous seizures. So we know that from clinical trials and the big problem we have is that it's going to take some years before there is any better medication. You know better medications which have equal effectiveness and have don't have big problems with the safety profile in relation to the unborn. At the same time and that's the problem we've got we don't have an easy solution.

    Angela Walker: 32:10

    I mean if a woman wants a child and she has epilepsy, what can she do? Because clearly having seizures is extremely dangerous for her and the unborn child, but sodium valparate could lead to birth defects. So what can a woman in that situation do? What are her options?

    Jane Hanna OBE: 32:33

    Well, if they are accessing, like a specialist midwife, you know, or a specialist who understands the medications, there are always options. One of the problems is where you have a policy or an approach to people with epilepsy men or women because actually this is a policy that's going to extend to men. The problem is that if you treat a population as permanently reproducing from, you know, from a nine-year-old child through to a 55-year-old woman or man and you sort of say that a drug bad people shouldn't be on it, we've got to be very mindful that there are going to be deaths and there are going to be A&Es, and there's going to be children not at school and there's going to be people who lose their driving licenses and can't work. So that's why, ultimately, it's sort of about whose decision is it? Is it the state's decision? Well, it sounds like it would be for any other health condition.

    Angela Walker: 34:12

    So it sounds like what you might be saying is people need a bespoke plan. So a drug that's dangerous for a pregnant woman is not necessarily dangerous for, you know, a middle-aged man. So are you saying that this sodium valparate has been tarnished, its reputation has been tarnished and so people who would benefit from it are dying because they're not taking that drug? Is that what you're suggesting?

    Jane Hanna OBE: 34:47

    Well, we need to sort of look at the deaths really closely and we need to look at the learnings from deaths that are coming through inquests, to learn lessons where we find that people are dying who have not been sort of offered valparate and have not been offered options. Because, of course, you've got to remember, for a woman there are lots of decisions, aren't there? There's decisions about whether you want to have a child, whether you don't want to child, when you might have a child, whether it's really important to have a birth child, or whether you might want you to adopt, or do you know? There's actually quite a lot of choices that women could have, but they're not necessarily going to have those conversations if they don't actually appreciate what the benefits of medicines are relative to the harms of medicines. And so it has to be person centred, it has to be bespoke to their particular condition.

    Angela Walker: 35:59

    Is sodium valparate only dangerous while you're taking it, or could a woman take it and then stop taking it for a period while she had her children?

    Jane Hanna OBE: 36:12

    So this is where a specialist midwife would be able to talk through all of those and create a plan and absolutely there are lots of options and I know that because we work really closely with the specialists sort of midwives and specialist doctors so we know that there are many, many options that can be explored. But it can only happen if there is this counselling, if there is, there is the resource in the system to, you know, have those conversations with women.

    Angela Walker: 36:46

    Now I know you mentioned previously well, I know you mentioned previously to me that not all deaths related to epilepsy are registered as such, and that's something that you're very concerned about, because I guess if someone dies as a result of epilepsy and it doesn't go down on their death certificate, then that's really skewing the data. So tell me a bit about what's going on and your worries there.

    Jane Hanna OBE: 37:16

    So when we started, deaths were just put down as anything and quite often they were put down as unassetained and that means that you're really denying the existence of the person who's died. There's no value sort of put on them. There's no value put on the the prevention of future deaths. So that improved hugely, you know, after we got things going and sort of changed the world view on epilepsy deaths and Sudak, and here in the UK we got pathology guidance in 2006 which set out for pathologists and coroners what to do if somebody dies who has epilepsy. So that was a great move forward and you know, we did see improvements on recordings of deaths. However, my team, as I say, we work on 77 inquests in a year and so it's really quite common for us to see deaths in people with epilepsy being put down as that the heart has stopped and the pathology guidance aren't used. There was a really important case in the Midlands about the death of a young man called Clive Tracy, and the family fought for four years to get recognition of how he died and what the actions needed to be to prevent future deaths and Sudak. Action was able to go in with the evidence we have so that Clive's death could count, and there is now really good work going on in the Midlands area on patient safety, which has actually been shortlisted for a prize from by the health service journal. So so I think that sort of shows you that the real importance of having the death counted is that you can actually change and make improvements to keep people safer 20 deaths a week.

    Angela Walker: 39:44

    I mean, if people, if 20 people are being shot every week, you know I mean would be people will be outraged. That's a really high number, especially if, as you say, a lot of those deaths are preventable.

    Jane Hanna OBE: 40:00

    Yes, it's 21, and conservatively, as I say, when we did the national surveillance we were able to show two decades ago that there were 42 percent that were potentially avoidable. We've got we've got so many more improvements now and we know from other research that the potential for stopping deaths is much higher. And, as you say, it's 21 a week. But it's all to do with visibility and you're right. If, if these were 21 mainly young people who died suddenly in a week and we could see them all died in the street somewhere, everyone would be all over it. But because these deaths happen in people's homes and they happen all over the UK in different places and they pop up as small sort of media reports in different places, they don't, the public never really gets to to see the see the visibility of this and see the impact on the families. We've done the research with the families. So we've got the evidence that the harm to families, the trauma to families, is lifelong. We have many families that have been with us for decades and we have hugely inspirational people who have somehow been resilient against that and against the invisibility, against the system not really recognizing, not really including epilepsy. You've got inspirational families who have done everything in their power to move things forward in spite of that. But they shouldn't have to fight, they shouldn't. They should be allowed to grieve and to pay tribute to, you know, to celebrate that life, which they do. So the, the families, do celebrate the real positivity and contribution of the, the people you know, to this world, but they have to fight all this hard stuff as well, and it really has to stop. You know, we, we really need our culture to change and to really embrace learning the lessons from us and doing the simple things first, the basic things that could, could do a lot to improve lives in a nutshell, what would you like to see done now around? sort of the whole of the uk. I, I would really like to see every community sort of being supported so that the simple stuff, that where somebody has a seizure, but immediately that is picked up in a community by someone who has enough knowledge in order to help that person navigate, help that person to advocate, to really get the best they can for themselves, so that really, you know, seven out of ten people they should be seizure free. It shouldn't be an issue, and though that needs to happen so that people can just get on with their lives. That's what we'd like to see. We'd like to see, you know, our risk tools just being used, you know, people being told about them, so they can use them, so they can really sort of advocate for themselves. We would like to read families. You know, when there is a death, we would really like people to listen and there to be learning after a death. We see systems now and they sort of say we'll only listen, we'll only look at this if you can tell us that this is negligence. And, you know, if we're in a society now where we're actually sort of saying to bereaved families who are in pain, in trauma, you've got to get lawyers, you've got to sue before we'll actually start looking at lessons. That's a really sad state of affairs. So we're fighting back against that. We would like to see humanity, we would like to see families being given the choices so they can get the specialist counselling, they can get the support for inquests, they can get involved in research, they can get involved in the cause in a really positive way, so that there's hope, and we really don't want families caught up in litigations which last for years.

    Angela Walker: 45:12

    It sounds like investment in. I mean, really it's about prevention and it sounds like an education issue and a management issue to prevent these deaths in the first place rather than managing the way that these deaths are dealt with. You know, if they could be prevented up front, obviously that's the number one priority, surely?

    Jane Hanna OBE: 45:36

    It is the number one priority, but what we've found over the years is that actually, what does prompt improvements in local places is where, sadly, there is the worst case has happened. Really, it shouldn't have happened, and that's when we get, for example, the system investing in. We need more specialist, we need another specialist nurse, we need to do training, we need to use the checklist, and so that's why the learning from us is important, because when people see a young person, a vibrant young person or a person with learning disability, vibrant as well in their community, that could have been doing all sorts of contributions, they are shocked. Actually, they are shocked and they do get motivated by those individuals, and so that's why they are connected and that's why, certainly, the charity works in a very holistic way. So the engine room for change does come from the bereaved families, as well as from the research teams and the clinicians and from people with epilepsy. But we would like a world, really, where it would be very easy for people with epilepsy to stand up and to have the information they need and get the support so that they can get the treatment and they can just get on with all the marvellous things that they can do to contribute to our society.

    Angela Walker: 47:15

    Which they can do if they get their condition under control, and they can get their condition under control if it's managed by the medical community properly. From the sound of it.

    Jane Hanna OBE: 47:28

    Yeah, as I say, there's been report after report after report. When I did the actual order in 2002, there'd already been six national reports, been lots of reports since 2002, and the problem is that we just get caught up in this paperwork trail and the charities get invited to be part of all sorts of initiatives at a national level, but the action on the ground we don't see, and that sort of has to stop, and that can only stop by actually having epilepsy included in strategic planning. There have to be the levers to actually make things happen and to a lot of, the clinicians that go into epilepsy are very, very motivated. They're very, very caring. It's not a popular area to go into and they've gone into this area because they really want to make things better for people with epilepsy. But they often work in systems which really treat epilepsy as like bread and butter. They don't really take it terribly seriously. And that's what the Chief Medical Officer said in 2002. He said this is the problem. It's just not taken seriously in the way that it should be, and that's why we're talking about this being a public health crisis. In a way, it's about inequalities, it's about that, and so that has to be recognised and worked on, and we weren't, you know, if we were to do all this, we're not going to stop all the deaths, because some people will die from the condition, in the same way that people die from other conditions, and we need more research to improve the chances of people with epilepsy using people with rare forms of epilepsy and genetic epilepsy, where there might be, you know, cures in the future. But what we have to do is the here and now. We can't have, you know, more and more years of just saying the same. It's at least 21 deaths a week. As a charity, it's heartbreaking, really, to see the deaths come in day in, day out, and to, you know, be alongside those families is absolutely crucial. And but there has to be a system response and we need the sort of visibility like you're giving today, angela. I mean it's just fantastic, you know, to have you doing this podcast because it just means so much to people, and we have other champion journalists who are willing to be brave. We're willing to actually, you know, look at something that has been, you know, isn't for some reason considered, you know, sexy enough or whatever it is, you know, to make the news. I mean it's, thank you so much, no problem.

    Angela Walker: 50:41

    Well, it's an important issue and it's obviously been under reported for a long time, so I'm really happy to talk to you about it. Thank you very much, jane. Thank you, thank you very much. My guest today has been Jane Hanna, the founder of Sudette Action. I hope you've enjoyed the show. For more information, check out my website, angelawalkerreportscom, and if you know someone inspirational that I should be talking to, or if there's an under reported issue I should be discussing, let me know. Until next time, take care.

    #EpilepsyAwareness #SUDEPAction #PreventEpilepsyDeaths #HealthcareChange #EpilepsyManagement #RaisingAwareness #EpilepsyPodcast #MedicalCommunity #EarlyDiagnosis #SUDEPApp #MaternalHealth #PregnancyAndEpilepsy #CollaborativeEfforts #SaferFuture

  • 31 July 2023

    Imagine having unlicensed toxins injected into your face by someone with no training. That's what is happening across the UK every day - with disastrous results. Nurse Practitioner Sarah Healy and Ashton Collins from campaign group Save Face join me to discuss the alarming lack of regulation in the booming non-surgical aesthetics industry.

    Hear how unscrupulous beauticians are buying unlicensed products from overseas and injecting unwitting consumers with saline, beef gelatine and other products.

    Sarah, who's been shortlisted for a Safety In Beauty Award, gives us a first-hand account of the process she follows when dealing with patients seeking injectable treatments and the risks they pose. We also discuss how social media and reality TV have played their role in escalating the demand amongst the young, and why it's more important than ever to ensure you're in the hands of a suitably trained and certified practitioner. So, tune in, as we end with a discussion around the current standards in aesthetic treatments and how to ensure your safety in this rapidly growing industry.

    Angela Walker: 0:08

    Thousands of people in the UK are having toxins injected into their faces by unqualified, unlicensed practitioners in the name of beauty. The number of people having non-surgical aesthetic cosmetic procedures has exploded. That's in the words of the All Party Parliamentary Group on Beauty, aesthetics and Well-Being. But government regulation has not kept pace, leaving people vulnerable to botched treatments and complications as serious as blindness and anaphylaxis. And there are concerns that young people with body image problems are having treatments without being psychologically assessed. I'm Janice Angela Walker and in my podcast I interview inspirational people and discuss under-reported issues. Today I'm in conversation with Sarah Healy, a nurse of 24 years who now runs Sarah Healy Aesthetics and will also be hearing from Save Face, the government-approved register of aesthetic practitioners. Sarah, thanks for joining me. Thank you for having me. Now you're a qualified nurse and you've set up your own practice. Tell me about your background and qualifications.

    Sarah Healy: 1:21

    I qualified as a nurse in 2004, working in accident and emergency and then moving on to oncology In 2019,. having dabbled in a little bit of aesthetics myself, I decided to branch out and take on an aesthetic role. I didn't go into it lightly. You can practice in aesthetics having just done a day course in this country. However, I went and did a level seven, which is a master's certificate in aesthetics, which is currently the highest qualification you can have to practice in medical aesthetics.

    Angela Walker: 1:55

    Now I know that you've got concerns about safety and the fact that people don't need to be as highly qualified as yourself to go about practicing in aesthetics. What are your concerns about people who aren't as qualified as you doing these injections and so?

    Sarah Healy: 2:13

    forth. My major concerns are how unqualified practitioners will deal with medical complications associated with aesthetic procedures. Generally, when aesthetics are carried out, aesthetic treatments are carried out by medical professionals. They're not without risk, but the risk is minimized. Things like infection control and other complications are minimized when you go to a medical practitioner. However, when people aren't medically qualified, the risks are then heightened. You tend to see more risks associated and more complications associated with treatments. I then wonder how the complications are treated by non-medical practitioners, as lots of the remedies for complications tend to be prescription only.

    Angela Walker: 3:07

    So if somebody comes to you and says I'd like some Botox, i'd like some fillers, what's the procedure? Do you jump straight in and just start injecting? What process do you go through?

    Sarah Healy: 3:20

    Absolutely not. So I always invite anyone that's considering any injectable treatment to come in for a face-to-face consultation. That's quite a nice way to get to know each other, get to know what expectations of treatment are The patient can. Then we can talk about the risks associated with such treatments. We can establish whether the expectation level what if the patient believes the treatments are going to give them the aesthetic result they want. So we talk about limitations of treatment as well, because we've got to remember these are non-surgical procedures. They're not necessarily facelifts. So some people might want lots and lots of different things that are treated and their expectation levels are up here when actually we're looking at somewhere. You know they are still non-surgical treatments. So we manage patient expectations. We then talk about I always say less is more. So we talk about how to dip if they are considering injectables, dipping their toe in the water and what would be the best way to do that. We also look at contraindications to treatment. So if a patient has, if there's a reason why they can't have such treatments, we look at their medical history. We establish what would be the most appropriate way. Sometimes it's not always injectable treatment, sometimes it can be just a really, really good skincare regime. So we always start with a foundation and look at building up on that.

    Angela Walker: 4:48

    And you mentioned side effects. Yeah, they're not all catastrophic. I mean there are. what kind of side effects can people expect if they have these injectables?

    Sarah Healy: 4:58

    So risks vary. more commonly, if you're having injectable treatment, common risks are injection associated risks. So a little bit of bleeding, a little bit of bruising, swelling, and then we get into more serious side effects, which can be infection and unwanted aesthetic outcome. So if an injectable is placed into the wrong area, we can have an undesirable outcome with regards to toxin treatments. If we're looking at dermal filler, we can have more serious complications with regard to vascular occlusion, which is when a product is placed into a vessel and that becomes a medical emergency and it needs to be dissolved. It's incredibly rare, however. it does happen and it is a medical emergency. So vascular occlusion leads it on to things like blindless and stroke in extremely severe cases if left untreated.

    Angela Walker: 5:52

    Now I've been doing a lot of research into this because I knew we were going to have this chat and I know that you've got concerns about regulation safety. You only have to pop onto Facebook and do a little Google for Botox, injectables and this kind of thing And you come up with lots of people on Facebook and other social media who are mobile, who come to your house, give you some Botox, give you some fillers. What is the regulation regarding being qualified and being allowed to do that?

    Sarah Healy: 6:28

    There are no regulations. So I always say that the UK is actually the wild west of the aesthetics industry. When you're a medical professional, we do have a code of conduct to adhere to, so we do have to buy licensed products from licensed pharmacies. So, generally, our products are safe. They're tested, they're CE marked, they're FDA approved. However, when you are a non-medical professional, you don't have to answer to a code of conduct, so you're not bound by these rules that medics are. People can purchase what they want from wherever they want and injects Joe public. Basically, just because something's not licensed in the UK doesn't mean that you can't get your hands on it. I regularly get Instagram inboxes from all kinds of filler supply people trying to sell me unlicensed toxin from around the world.

    Angela Walker: 7:27

    And we'll talk about that a bit more in a minute, and we're going to talk to a lady from an organisation called Save Face, but before we do I just want to mention this. I've got here three official reports. This one is the Ugly Side of Beauty Improving the Safety of Cosmetic Treatments in England. This is by the Chartered Institute of Environmental Health and they're calling for better regulation and a licensing scheme for England. This one is from the House of Commons Health and Social Care Committee. It's called The Impact of Body Image on Mental and Physical Health. This is a report from last year. The recommendations in this report were asking for better regulation to be implemented by this month, by July. That hasn't happened. And there's another report here from the All Party Parliamentary Group on Beauty, Aesthetics and Well-being. This is another one about botulinum toxins and other injectables and calling for more regulation. It looks like the government knows there's an issue but they haven't done anything about it. I quite agree.

    Sarah Healy: 8:38

    They do know there's an issue, i do worry It's an issue that's been going on a long, long time and it's become quite embedded in the way that we practice in the UK. I think it will take a long time to undo those issues. I think really they do need to act now And, like Safeface have suggested, non-medical practitioners should be working under someone who can prescribe, a medical professional who can prescribe and who can protect people who are embarking on injectable treatments.

    Angela Walker: 9:15

    Earlier aspect to Ashton Collins from Safeface. She set that organisation up because she wanted to have some treatment herself and she couldn't find a way of finding a registered safe practitioner to do that and that worried her. Let's have a listen to what she has to say.

    Ashton Collins: 9:33

    So I established Safeface in 2014, and basically what happened was I was looking for a treatment provider. I was considering having lip fillers, and at the time I was working in compliance and accreditation for like health and safety and occupational health, so I knew a lot about independent assessment and verification and all those sorts of models. But as I was doing my research for the amount of practitioners I was finding I was also confronting with just as many horror stories, botched news articles and different things like that, and so I was doing more and more research, and I stumbled across a government commissioned report at the time, which was commissioned on the back of the breast implant PIP breast implant scandal, and I think that report, for the first time, really did expose just how unregulated non-surgical cosmetic procedures are and just how unprotected the people that consume them are if things go wrong, and so that sort of sparked a desire in me to take what I'd known about assessment, verification, accreditation and apply it to a sector that was in dire need of it. So I set up a business plan and engaged with key stakeholders and to make sure that the standards were fit for purpose and that our model was ticked all the boxes in terms of the checks that we do on behalf of the consumer, and so that's when it started, and then in 2016, we became government approved, so we're now accredited and overseen by the same body that oversees the statutory regulatory registers in the UK. So your doctors, your nurses and things like that And what we do is essentially is we take all the burden and guesswork away from the member of the public as possible, so we check everything on their behalf to make sure that they're in the safest possible hands, that that person uses safe products and operates from a safe clinical setting.

    Angela Walker: 11:26

    What are the risks associated with having one of these non-surgical cosmetic treatments by somebody who hasn't got a medical qualification?

    Ashton Collins: 11:38

    Yeah, and that's for us where the concern comes in is that these treatments in and of themselves are not necessarily high risk. although they can cause quite serious complications, those complications are minimized when in the hands of healthcare professionals, so they can range from things like infections, lumps and sightly outcomes right through to one the other end of the spectrum tissue loss and blindness. And it's really important that, for example, botox is a prescription only medicine, so only healthcare professionals and only a certain number of healthcare professionals are able to prescribe within aesthetics. and a lot of people don't know that and they have no expectation that when they go to their local beauty therapists or Botox that they ought to be seen by a prescriber before they can be prescribed the drug. And dermal fillers although they're not prescription only devices, they actually can cause far more serious complications than Botox. So, like I said, the tissue death, the blindness and anything that happens as a complication of dermal filler treatments requires prescription only treatments to remedy that. So it's really important that you are in the hands of a trained healthcare professional because if something did go wrong, they're best equipped to look after you.

    Angela Walker: 12:55

    In one of the government reports. It describes the increase in people having these treatments as an explosion, and so many more people are going for it now, and a lot of them are quite young people, under the age of 30 even. Why do you think that we're seeing this and what do you feel about that as an organisation?

    Ashton Collins: 13:19

    Yeah, i mean, you know these treatments really are quite ubiquitous now and I think you know, when you cast your mind back to when these treatments first came to the UK, sort of 15, 20 years ago, they were very much reserved for the rich, the famous, and they were mostly, you know, being consumed by middle-aged women who wanted to look a little bit younger, a little bit fresher. But now, because of the advent of social media, reality TV, they're being presented to a much younger audience and people like Kylie Jenner and all of the sort of Love Island contestants are creating an appetite amongst these very young girls. and that is concerning because obviously you know a lot of these girls don't need these treatments at all, but also because they are most at risk of falling in unsafe hands, because they don't appreciate that they're medical interventions and therefore they have no expectation around the person doing the treatments. They are not necessarily cash rich, so they're looking for bargains and they turn to social media to find cheap deals, time-limited offers, and they are the sort of high-risk things that lead you into getting perhaps into unscrupulous hands. And actually, you know we are the only organisation in the UK that gathers patient-reported data on complaints. So in the nearly 10 years that we've been operating, we've helped over 15,000 members of the public who have suffered. you know complications and wanted outcomes, adverse reactions, and you know quite consistently nearly 50% of those people are under 30. And the problem with practitioners that operate in that way is that they operate pretty much like ghosts. So you know you stumble across a page and it's got a spurious name, for example, amy's Aesthetics. Amy is mobile. She comes to your house to do the treatment. You only have her Instagram contact and perhaps a mobile phone number for her, and so she comes along. she doesn't tell you about any possible side effects. you know the treatment is over and done within five minutes and she's out the door. And then you start to notice perhaps things not quite right. You might be in a lot of pain, discomfort, swelling, and the more you reach out to Amy, you know she fobs you off and then eventually she cuts communication with you completely. You don't know her full name, you've got no address for her, you don't know if she's insured, you don't know what product she's used. There's no medical records. So that makes it tricky when it comes to seeking any redress, but also when it comes to trying to find somebody else to do some corrective treatment, because that person is then reluctant to take you on as a patient because they have no idea what Amy's injected and where. So these are the sort of you know consequences that happen a lot when people look to social media to find a practitioner.

    Angela Walker: 16:06

    It's so easy to find someone on social media. You only have to take a quick look on Facebook, because I've been doing that in my research for this podcast and there's so many people who are willing to come to your house and give you these treatments. There are also a lot of support groups on Facebook for people who feel that they've had botched treatments. Yeah, what do you think the government should be doing about it?

    Ashton Collins: 16:30

    Well, for us I mean the government has been aware of these problems for well over a decade and you know, in that time things have gotten worse because the treatments have become more popular and, as a direct consequence of that, more and more people have emerged as practitioners without any training, without any qualifications. And so it really is at a point now where you know there is an unknown quantity of people providing an unknown quantity of treatments. And obviously that's a risk because even if you were to introduce regulation, you have no means of tying these people to any fixed address. You don't know how to find them. They often, you know, if they operate on social media, as soon as they have a couple of complaints they'll shut that page down and pop up somewhere else. And you, you know, you don't know who they are, and so you know it is in a very difficult point now where you know, if you were to regulate, how you would capture these people within any sort of scheme. But for us I mean, we're always, you know, of the mindset we only accredited health care professionals and only a certain number of those. So we only register doctors, nurses, dentists and prescribing pharmacists, and they that's because they can all prescribe and practice within aesthetics as part of their regulatory framework. And you know, these treatments, demonstrably, are safer in the hands of health care professionals because in that time that we've been gathering the patient reported data 80, over 80% of the treatment of the complaints that we get are related to treatments carried out by non health care professionals. So your beauticians, your lay people, your hairdressers, so the data speaks for itself. So we would really like there to be some restrictions on who can and can't do these treatments And if the government are not willing to do that, then to put in place a framework where they have to be overseen and supervised by a registered health care professional, because you know that that is needed.

    Angela Walker: 18:17

    My understanding is that VAT is not always payable on these treatments. Can you tell me about that? Because obviously, if the government's taking VAT, the government's benefiting financially from the fact that there is a lack of regulation in the industry.

    Ashton Collins: 18:38

    Yeah, i think they will be certainly benefiting from people. you know registered businesses who are eligible to become fat registered. They'll be benefiting from it, and you know these treatments because they're elective and they're not for medical indications necessarily. they're classified, as you know beauty enhancements And therefore you know they are. they're VAT payable. The issue that the government have, though, with that, you know, for as much money as they will be generating through legitimate businesses, they're also losing out on a considerable amount of people that operate under the radar that should perhaps be paying tax and VAT on these treatments that aren't How do people find out who has got some suitable qualifications? This is the thing. So you know, often you'll find in, you know, press and media articles that people are told to do their research. Well, you know that's easier said than done. You know the average persons looking for these treatments don't know what qualifications these people should hold, what level of training they should have, what products they ought to be using and what sort of clinical setting they should be operating in. Which is why we set up the register, because even if you knew what questions to ask, if you're sat in front of somebody quite unscrupulous and you say to them have you been trained, are you insured, do you have all these things in place? They'll say yes, because they want your money, your business. So you know, we've investigated cases where people have been masquerading as plastic surgeons when they haven't done a day's training in their lives. They've been buying fake products from China, and you know people have had anaphylactic reactions and have had permanent damage to their face because of these illegitimate products. And so you know there is no way of being able to verify things yourself, which is why the you know, safe face is so important.

    Angela Walker: 20:27

    Yeah, tell me about these illegal products that people are managing to get their hands on, because Botox itself is that prescription only, you said, But of course that's just a brand name, isn't it? So talk me through the availability of these kind of products, how people are getting hold of them.

    Ashton Collins: 20:45

    Yeah. So I mean I'll tell you the problem first in terms of you know why these non-housecare professionals are turned into this route. So if you were a beauty therapist, for example, and you wanted to offer Botox to your patients, then you would have to. It would be within a legal framework. You'd have to engage with a registered healthcare professional who's competent to prescribe, and every time you have a new client you have to have a valid prescription. So that prescriber has to do a face-to-face consultation with every person that you're going to be treating, to do an assessment to see whether they're suitable and to ascertain what dosage that they would require. Now, obviously that's logistically challenging for somebody to do that every time you have a new patient And also it's quite costly. So prescribers will charge around £30 to £50 per prescription And then you add on the cost of the product and it sort of makes you sort of quite uncompetitive that you have to do that. And so what is happening increasingly is that people are cutting that out completely and buying botulinum toxin common-name Botox over the internet and importing it from China. And obviously the risk with that is that it could be nothing. It could be completely harmless saline solution that isn't going to deliver you any benefits but also isn't going to present you with a great deal of risk. Or, in the cases that we've seen, it could be beef gelatin. You know that the product that it was seized in the investigation that we worked on contained no traces of botulinum toxin. It was beef gelatin and it caused, you know, up to 20 women to have severe anaphylactic reactions, and so that's the other thing to be mindful of is you know the legitimacy and the efficacy of the products that people are using. You know, especially when you see alarmingly cheap prices, if you see a £99 Botox offer, the chances are that person isn't using licensed products.

    Angela Walker: 22:39

    So, just to recap, what you're telling me is that unscrupulous people are buying on the internet Botox type products from China and injecting these into people's faces.

    Ashton Collins: 22:52

    Yeah, and we've seen horrible consequences where, you know people have been injected with these fake products. You know women who have had, you know, massive lumps appear at each injection site with Botox. You know you'd have about 10 to 15 injections across your forehead, more if you were having it around your eyes, you know, in the lower half of your face, and these lumps are sort of pustules that continue to keep refilling and bursting. They're causing people terrible crater-like scars. We've had a woman who's you know had necrosis from it and had to have surgery on half of her face because the infection has become so bad that she's now left with, you know, scars that are so deep where half of her face has been, you know, quite literally surgically removed as a result of these products. And that's the you know. That's what we try to do in terms of educating the public is that you know they wouldn't necessarily think that anybody would be unscrupulous enough to take a gamble like that with your health and your appearance. But the primary aim for these people is financial gain and they will do anything to make as much profit as possible.

    Angela Walker: 23:55

    Absolutely shocking. There were some government recommendations from the all parliamentary group on beauty and health and they were calling for action to take place in July. by July this year That's not happened. Tell me a bit about that.

    Ashton Collins: 24:14

    Yeah, and I mean you know, i think that in itself was quite an irresponsible call to action, because you know, especially from people who work within the Legislature framework and will understand, the amount of work that would go into developing a scheme that would be fit for purpose and robust enough to actually make any tangible difference. It's so unrealistic to expect that that would have been mobilized in less than a year, and so you know what that did is, you know, create this expectation within the press and the public that this issue is going to be sorted by next month, and of course that's never going to happen. You know these things can take years to implement and get right, and so you know it's unrealistic to even think that it would be by next July or the July after It's. you know there is a massive piece of work.

    Angela Walker: 25:00

    Now tell me what is your message to government. Be specific here. What exactly would safe face like to see?

    Ashton Collins: 25:07

    We would like to see a you know a regulatory framework that is robust enough to capture all these ghost-like operators and to put in place a you know if they're not going to restrict who can and can't do that and I understand why they wouldn't want to, because you know, like you said, they don't want to, you know, curtail people's right to make a living and do these treatments safely. But it is imperative that they put in place a supervision matrix in terms of if you are a non-healthcare professional operating in this space, you have to work under the direct supervision of a registered health care professional who can prescribe, because that is essential for managing complications.

    Angela Walker: 25:47

    And if there's anyone listening who's thinking about having some of these treatments and let's be honest, you know, if people want these treatments, there's nothing wrong with going out and having these treatments. It's about getting it done safely. So we're not judging here on if people should have non-surgical treatments or procedures or whatever. If that's what people want to do, absolutely that, we're not criticising that at all. So if somebody's listening and they are thinking, yeah, you know, i want to, i want to have some treatments, what's your message to them?

    Ashton Collins: 26:21

    Look, these treatments are fantastic in safe hands. They can make you feel more confident, you know they can make you look younger, fresher. Whatever it is that you were wanting to achieve, you know that they are fantastic. It's just for us is the safety message if you are considering a cosmetic intervention, you know, take every precaution necessary, check safe face, find a practitioner in your area that you know is past a really rigorous assessment process, that you'll be in a safe pair of hands.

    Angela Walker: 26:48

    So Ashton mentioned some really worrying things there. One of them was, as you touched on earlier, people importing unlicensed products, which she says sometimes they could be saline, they could be beef gelatin. I mean, how easy is it for people to get hold of this stuff then?

    Sarah Healy: 27:09

    Hearing that actually chilled me to the bone. I think it is quite easy for people to get those products. I think you only have to go on to Instagram and register yourself as so-and-so aesthetics and you'll have people in boxing you with these products. It's quite easy to get your hands on unlicensed products, which is the huge worry. I think that's, personally, where the government need to put their energy into first is getting these unlicensed products off the street, so to speak, because that's how I feel it is.

    Angela Walker: 27:49

    One of the other things that Ashton mentioned was any increasing numbers of really young people people who are under 30, who are having injectables in their faces, and that number of young people doing that has grown exponentially. Why do you think that's happening? It's access.

    Sarah Healy: 28:07

    So with the rise of social media, certainly, and certain TV programs, i think it's created a standard for young people to adhere to, not necessarily a positive one either. It's a certain expectation that certain women under 30, women and men under 30, tend to think that this is a look, a desirable look. So I think social media, instagram and definitely some of the TV shows have certainly propelled that sort of market forward with that.

    Angela Walker: 28:47

    Do you think there should be some kind of signage saying this image has been digitally enhanced. This has been photoshopped, you know so that people know that that's not actually how somebody looks.

    Sarah Healy: 28:59

    Yes, the expectation absolutely. And also I think there should be more policing of certain aesthetic practitioners selling packages with celebrity names associated with them, because I just think that gives a really, really well, one, it's not ethical, but two, it's not just not achievable either. What?

    Angela Walker: 29:21

    do you mean so someone can go in and go? oh, i'd like the Kylie Jenner please.

    Sarah Healy: 29:24

    Absolutely. There's certain packages. You can get a Kylie package in some places. You can get a Kim package in some places. Now, aesthetics is all about enhancing. Personally, i think aesthetics is all about enhancing your own natural beauty and not trying to look like somebody else.

    Angela Walker: 29:42

    Let's be clear we don't want to demonise these treatments and there are plenty of practitioners who carry them out really safely and people are really happy with the results. I mean, obviously you do it for a living, so you feel very positive about them.

    Sarah Healy: 29:58

    tell me about it, absolutely generally if they are done safely, if they are done with proper tested, tried tested, fda approved Z-mark products generally, the outcome can be really really nice, depending on what the patient desires. What I would say to people is I'd always invite them to ask their aesthetic practitioner and preferably a medical practitioner who they're insured with, who they're registered with ask to see their. You can ask to see someone's insurance. You can check them out on the NMC website so someone could check my registration. You can check out a doctor's on the GMC. You can check out a practitioner to ensure you are embarking on them from a safer aspect.

    Angela Walker: 30:48

    It sounds to me like younger people might be quite vulnerable to these kind of cowboy practitioners because they might not have as much spare cash. They're aspiring to all these kind of like social media images and so on, and they're popping out to get their hair done and get their lips done at the same time. Do you think that we maybe need some kind of public education or information campaign to tell people that they should be checking for these things, because perhaps they don't realise that what they're going for is actually a medical procedure?

    Sarah Healy: 31:23

    Yes, and also it's some of these even to a medical professional to buy. They're not cheap, they're not cheap projects. So if something is alarmingly cheap, generally there's something we all know that pay, you know, pay cheap, pay twice. We all know that if something is worryingly cheap, then generally it's not licensed, it's not safe, it's not. You know, the person injecting it probably doesn't have the skills, the skillset. Things are priced in aesthetics with regards to the injector's skill and also the injectors, the products that they're using. So if something is cheap, generally it's not. You know, it's not going to be good for you. There is, i mean you pay for the skill and not the mill is what they say in aesthetics so it feels like this is kind of like an industry that's developing quickly.

    Angela Walker: 32:18

    It's growing really fast. Are you finding that there are like new procedures coming out and things like that?

    Sarah Healy: 32:24

    Absolutely, and it's very important to keep yourself updated. As medics, as injectors, we have to keep ourselves updated with all the latest techniques, the latest products and also any changes to any sort of safety and complication management as well. So it's very important that you don't just people aren't just going and having a day course and then just carrying on injecting and becoming a little bit stagnant in their practice. You have to keep up to date. It changes every day, but that's the same in medicine. So the medical profession changes constantly and you're having to keep yourself up to date. So, as medical professionals, we're quite used to that. We're quite used to having to. We have a responsibility to keep ourselves up to date with the latest practice.

    Angela Walker: 33:16

    Of course, if you're, you know a layperson who started branching out from doing nails and hair and now you're doing injectables, they might not have this awareness. Also, especially if they're using unlicensed products. They might not know if there's a problem with that batch or something.

    Sarah Healy: 33:31

    No, absolutely if they're not, if they're not kept up to date, if they don't have a duty of care to keep themselves up to date, then how safe is that? is their practice.

    Angela Walker: 33:41

    So what exactly would you like to see put in place to protect consumers, then?

    Sarah Healy: 33:45

    Personally, i don't think med and non-medics should be injecting at all. Whether that will ever be enforced or put in place by the government, i don't know. I'd like to see a register where every every aesthetic injector has to register on and there has to be a standardized care care of the public throughout. So everyone has to meet a certain criteria. I believe all injectors should be at level seven. It should be at a level seven level. It shouldn't be able to embark on a day course and then go out and inject the following day. I do think that you should. Everyone should meet a sort of standardized criteria before injecting.

    Angela Walker: 34:27

    So let's be clear at the moment, I could go out and do a one-day course and then I could start injecting toxins into people's faces Tomorrow. Yeah, you can absolutely do that. That's quite a thought. That's a quite thought. And what's level seven that you mentioned there? just expand that.

    Sarah Healy: 34:42

    So the level seven was created. It's a master's level, certificate or diploma in aesthetics. It was created to standardize practice. Not only is it a practical, but you. There's a lot of theory around it as well, which is really good, because it enables the practitioner to think outside the box, enables you to consider all aspects of the patient you have to touch on. You have to delve into medical complications, you have to look at this, you have to look at the layers of the skin even you know so a lot of anatomy, a lot of physiology, a lot of pharmacology of the injectable that you're placing in patients. So it's very, very in-depth. It's something that can't possibly be taught on a one-day talk course. It took me around 12 months.

    Angela Walker: 35:32

    And let's just talk about body image for a bit, because you know we've talked about the pressures on social media. How do you assess when someone comes to you, they might be a young person, who you know, who might not need any of the, they might not have wrinkles, they might not need any of these treatments or they might have, you know, a body image problems. You know, how can you psychologically assess if somebody should have a treatment like that?

    Sarah Healy: 36:03

    It is a very, very difficult thing to assess, really on one meeting it is I get all my. There's lots of different assessment tools you can use to assess a patient's psychological body image and to assess whether they have body dysmorphic disorder. I get all my patients to fill out an assessment tool before they arrive. That being said, it's not just the assessment tool I use. I use years of nursing experience to assess a patient. Something doesn't sit right with me. I wouldn't inject. 20 years of nursing. That underpinning knowledge gives you in. It's kind of things that are ingrained into you from the off, so and it gives you your nursing intuition as well. There's other things that we do as well, so it goes nursing assessment, medical assessment, medical consultation there's lots of things that would make that would allow me to make a medical decision on whether this patient is right to have the injections.

    Angela Walker: 37:07

    And what's your message to government today?

    Sarah Healy: 37:10

    Personally, it's gone on long enough. I think they do need to act sooner. They need to take it seriously. They're aware of the issue, as we know. I think they need to work with organisations like Save Face and like the JCCP the Joint Council of Cosmetic Practitioners and listen to what these regulatory bodies are asking, and I think the government need to follow their lead really with regards to how they're registering practitioners and enforce it and back these companies up.

    Angela Walker: 37:47

    Sarah Healy thanks so much for joining me.

    Sarah Healy: 37:49

    Thank you for having me thanks.

    Angela Walker: 37:51

    I'm Angela Walker and today I've been in conversation with Sarah Healy of Sarah Healy Aesthetics and Ashton Collins from the group Save Face. I hope you've enjoyed the programme. for more information, check out my website, w please do get in touch if there's someone inspirational you think that I should have on the show and if there are any under reported issues that I should be looking at. Until next time, take care.

  • 24th July 2023

    Why are so many childcare providers in the UK feeling the financial strain, and are the government's budget promises enough to tackle the issue? Listen in as we chat with Ian Morgan from the campaign group Champagne Nurseries for Lemonade Funding and director of Little Ducklings Nursery in Berkshire. We delve into the challenges that the UK childcare industry is facing due to inadequate funding. We explore the increasing cost of staffing, the struggle to retain staff, and the impact of soaring costs for energy and food on providers.

    Ian shares his 16 years of experience in the industry and his hopes for its future, as well as the challenges faced by childcare providers . We also discuss the feelings amongst people in his group, Champagne Nurseries, Lemonade Funding, and potential solutions for providing quality childcare at an affordable cost for parents. Tune in to find out if the government's recent efforts will be enough to ease the burden on childcare providers and if the industry can adapt and thrive amidst these challenges.

    Angela Walker: 0:09

    32,000 women left the work force last year. Many of them say they simply can't afford the cost of childcare. Childcare here in the UK is among the highest in the world. That's according to the OECD, that's the Organisation for Economic Cooperation and Development. Full-time nursery fees for a child under two are around £13,000 a year. That's more than half of the average salary. But nurseries say they're struggling too. The government's introducing a range of measures to tackle the issue, but do they go far enough? I'm journalist Angela Walker, and in my podcast I talk to inspirational guests and discuss under-reported issues. Today I'm in conversation with Ian Morgan from the campaign group Champagne Nurseries for Lemonade Funding, who's also the director of Little Ducklings Nursery in Berkshire. Thanks very much for joining me, it's a pleasure. So I mentioned in the introduction that nursery places are costing upwards £13,000 a year. From a parent's point of view that feels like such a lot of money, but obviously we don't know all of the costs that are involved in running a nursery. What costs are there that you are forking out for?

    Ian Morgan: 1:27

    I think the biggest cost is staffing. For me, it equates to about 70% of my annual revenues and it's an ever-increasing cost.

    Angela Walker: 1:41

    You set up this support group for nurseries called Champagne Nurseries for Lemonade Funding. What's that all about, Ian?

    Ian Morgan: 1:48

    We basically were challenging the government and their funding scheme when they brought in the 33 hours. Our premise is that the hours aren't free, they're funded And it's a big issue because the funding the free hours, the government force us to give the hours free to parents and the cost of the free hours that the government pay us doesn't actually cover our costs.

    Angela Walker: 2:19

    Yes, as a parent, it feels like free childcare, but you really dispute that, don't you? So tell me about this disparity, then, between what the government is giving you towards and how much the service is actually costing to provide.

    Ian Morgan: 2:36

    Well, for example, the government give my local authority a certain amount of money and that comes down to me. So in Wokingham I get just over £5.35 an hour when actually my hourly rate is £6.80 an hour. So there's a discrepancy there And it's well known that the government expect us to cross subsidise with our private fees to fill that gap.

    Angela Walker: 3:12

    And is that feasible? I mean, you're subsidising it sounds like you feel like you're subsidising the childcare Yeah, and we are, and it's a well known fact.

    Ian Morgan: 3:23

    In fact, there are research documents in the House of Commons library that actually state that For me I can do that to a certain extent because I'm a very busy nursery and government funding doesn't. Actually it only takes about 30% of my revenues. So I have a large proportion of private fees but for smaller preschools, where maybe 100% of their revenues are funded money that there is no scope for them to cover that difference.

    Angela Walker: 4:01

    So, ultimately, what's going to happen to those nurseries?

    Ian Morgan: 4:05

    Well, we've seen over numerous years now that regularly nurseries are closing because financially they can't afford it And with minimum wage increasing that pressurises the salaries for those nurseries.

    Angela Walker: 4:24

    It seems crazy. There's a real shortage of childcare provision and yet nurseries are shutting down because they can't afford to keep going. What can be done about this?

    Ian Morgan: 4:36

    Well, obviously one thing is to fund us better, and there are certainly promises coming along to give us more money. But another big problem is the amount of available staff. I am constantly recruiting and it's a problem nationally. People don't want to work in childcare because we can't pay the salaries.

    Angela Walker: 5:02

    So it's like a catch-22 situation. It's not enough money for you to pay the staff so that they're leaving, and then that puts a greater pressure on the nurseries. What can we do then?

    Ian Morgan: 5:16

    Well, as I said, I think the funding is a major thing in terms of the amount of it. We have campaigned tirelessly for six years saying it's not enough. The government know it's not enough. There have been recent Freedom of Information Act requests which have shown government documentation saying they know that it's not enough. But they know that we will struggle on.

    Angela Walker: 5:46

    So what do the government say to you, because I'm sure you've been in talks with them. What are they saying?

    Ian Morgan: 5:54

    They always maintain that their formula of how they've calculated what we should get is adequate. We maintain that it's not. Anything like this should allow us all settings to make a profit, because profits get reinvested into our businesses for resources, but also for those bad times. I mean take COVID, when our businesses had to close down. Companies need reserves to get through these times and with the current formula, there just isn't any fat in what the government are giving us.

    Angela Walker: 6:38

    In the budget, the Chancellor announced that the provision for childcare will extend to even younger children and the hourly rate paid to childcare providers who deliver free hours will increase. What's that in reality? How's that working out?

    Ian Morgan: 6:53

    Okay, as of today, we know nothing. So it's a great promise and if I was cynical, i would say it's electioneering. It's a good idea. It's going to be a great thing for parents. However, i think there are some real risks for us and, for example, i said that funding takes about 30% of my revenues. When this new model comes in and it's completely implemented, my funding might actually take up 80% of my revenue. So that actually means that the fat that I used to have to cross subsidise has been diminished. So it's a very precarious situation. We're going to have to see how that pans out.

    Angela Walker: 7:50

    You mentioned electioneering. Is this a political issue? Do you think Labour could do any better?

    Ian Morgan: 7:56

    Do I think they can do any better? I think they will do something different. I think I've met the shadow team a number of years ago. I know that they'll do something different. But my worry is, with any government we will have issues with, and it really will depend on how much they actually understand what our problems are.

    Angela Walker: 8:25

    What do you think is the answer to providing quality child care at an affordable cost to make it viable for women to work? I mean, I remember when I had my first child, financially it wasn't viable for me to work more than two days a week because of the cost of child care. That was a few years ago. I don't think that's changed and I know that they're now offering £600 incentive for people who sign up to be childminders. It feels like a very piecemeal approach.

    Ian Morgan: 8:59

    Yeah, i think we think, as Champagne Nurseries for Women Aid Funding, we've always campaigned that rather than the funding be for free hours, we say that it should be a contribution The government in lots of their documentation talk about the free hours are worth £4,500 to parents. For us, if you said that it was £4,500 rather than 30 hours for 38 weeks it means that parents can choose how they spend it, and I think that's the key here. If they can choose what provider and how they're going to spend it, it may be less hours, but the parent will get what they want.

    Angela Walker: 9:55

    That's really interesting. I might get, for example, £500 worth of vouchers, and then it's up to me. I can choose a more expensive child care provider and have fewer hours, or I could choose somewhere that's more affordable or closer to where I live. That seems like a very sensible idea.

    Ian Morgan: 10:16

    It really is, and if you've been in child care long enough, you will remember that over 15 years ago, the free hours was a voucher. Many people still call it the voucher because it used to be a paper voucher with a monetary value.

    Angela Walker: 10:32

    Let's go back to Champagne Nurseries, lemonade Funding as an organisation. What prompted you to set it up? I mean, it's all very well when you're in an industry and you've got some frustrations and we all get that wherever we work but to actually think, oh my goodness, i've got to set up a campaign group. You must have felt so strongly and you must have felt that other people felt the same way too. So how did it kind of come about?

    Ian Morgan: 10:59

    Yeah, well, the original group. I came in quite early on, but I wasn't one of the founders. It was founded by three other people who were providers and they invited me because they saw how vocal I was. I came on board because I wanted to give back. My nurseries are very successful and I do well, which is not like other providers in a lot of cases. So I wanted to give back and I'm good at numbers and I like reading about legislation and things like that. So we just formed the group and we made a new sense of ourselves to get heard, and we've I mean, we've now got 24 and a half thousand people in our Facebook group who follow us regularly, and we try and keep them informed and tell the truth.

    Angela Walker: 11:56

    As we see it, You run two successful nurseries, but at the same time, other nurseries say they can't afford to keep going because of the childcare funding and they're shutting down. Why is it, if why is that the case, that they're struggling and you're not? what's what's going on there?

    Ian Morgan: 12:15

    I think the difference is is that childcare is a second career for me. I came from another business career and I came into it as a business person. But I understand who my customer is and my customer is the child. So I come in and I run it as a business but for the benefit of the children. So, and a lot of people in this industry they don't have that background in business, they do it because they had a child, they needed childcare so they thought they'd start up a preschool and things like that. They don't have the grounding so they don't necessarily see some of the business pitfalls.

    Angela Walker: 13:01

    That's really interesting actually. Yeah, because a lot of nurseries are run by people who've got background in childcare and not business like yourself. Yeah, exactly you see that all the time. Tell me a bit about the changes that are happening with the world that are being promised. What is the government promising for parents now? the increased provision.

    Ian Morgan: 13:25

    So they're promising 30 hours for anyone from nine months onwards. It's going to be phased in. Two year olds will be phased in in April next year and then in September the younger children will be phased in and then they'll go to the full 30 hours. They have to be working parents, so pretty much like the 30 hours is now in terms of that, both parents have to work and they have to work a minimum of 16 hours of minimum wage and things like that. We believe that those are going to be the criteria, which means that there's a whole lot of administration that we as providers and parents need to do to actually get this and admin costs money, doesn't it?

    Angela Walker: 14:15

    It does because time is money. Yeah, i mean we're talking about a three-fold increase in the number of children claiming these these hours and what is the feeling amongst people in your group Champagne Nurseries, lemonade funding about this kind of influx of extra children that they need to have?

    Ian Morgan: 14:36

    I think there's mixed feelings. You know there's not enough spaces potentially so there's and I think the government talk about it as being a great opportunity to provide new care, new settings to provide care. Well, i'd say that that's most probably quite limited. Is it a good thing or a bad thing? A lot of the children that they say are already in the system, if you like. You know, as I said, about Two-thirds of my children are from working parents, so they're already in my nursery, so it won't be much of an influx. But we don't have the staff, and that's the biggest problem.

    Angela Walker: 15:29

    It all comes back to this issue of staff retention.

    Ian Morgan: 15:32

    Yeah.

    Angela Walker: 15:33

    And how much you can pay people from the sounds of it.

    Ian Morgan: 15:36

    Absolutely, And you know I actively try and pay above minimum wage. I think some of the wages that I pay are most probably industry leading. But the low pay commission deems us as one of the worst sectors for having the lowest pay, And that's right, because the money that we get from the government is so low. So every year when minimum wage goes up we have an incredible pressure put upon us. I mean, this year the living wage went up by 9.7%. The next level, the 21 to 22-year-old age, actually went up by 10.1%. So my entire salary floor every year at the moment, for the last several years, is increasing by 10% And I can't control that.

    Angela Walker: 16:37

    Well, and you also can't control spiralling energy costs, you know, and the cost of living, the cost of the food that you have to provide, that's also going up at the same rate. You know that's going up, i think it's food inflations at 17% We've seen a fourfold increase in energy prices. And these are all costs that are hitting you and your business.

    Ian Morgan: 16:59

    Yeah, and I would say for energy costs I've been quite lucky because I was well into a contract, so my costs have been relatively OK. But yes, food costs have been increasing And sometimes we have to sit there where we're ordering online and just go, wow, that's increased dramatically in the last week or so and have to rethink on.

    Angela Walker: 17:27

    And talking about value for money as well. One of the things they're thinking of doing is changing the ratios of carers. At the moment there's one carer to four children. The government wants to move that to one to five children. Is that safe?

    Ian Morgan: 17:44

    Is it safe? Well, i don't think anyone in our industry is going to want to move to one to five. I think this whole ratio thing is a bit of a red herring, because that one ratio is just about two year olds, so actually doesn't actually affect parents that are receiving funding. So this is a different band of children. Is it safe? It could be. No one wants to go there. Working at one to four with a two year old one at a four two year olds is a hard job, and babies are at one to three as well. So it's a hard enough job as it is. If we reduce these ratios, we put much, much more pressure on the staff that are underpaid.

    Angela Walker: 18:40

    Yeah, of course I've got a toddler and I find him hard to look after on a one to one basis because you know they're so kamikaze. they're going around calming over things, getting into trouble, putting things in their mouths. I know that obviously nurseries are designed to be safe spaces and the children are contained, but really I cannot imagine looking after four, let alone five or six, toddlers.

    Ian Morgan: 19:08

    And you can't really contain them. That's the whole thing is that they've got to go and explore and they've got to experience things where maybe there is a bit of danger. So increasing the ratio is a nonsense and I have no idea why we've really done it, you've come up with this interesting noun about economics.

    Angela Walker: 19:32

    Tell us about this monopsony.

    Ian Morgan: 19:35

    Monopsony. So it's not a monopoly, but a monopsony is where you have a dominant purchaser in a market and they abuse the market by setting their own rate at which they will buy. Now our claim, for many years now, is that the government is abusing the childcare market. They are the largest purchasers of childcare and they set the figure that they will pay us. We did a competitions and markets authority complaint back in 2017 to this extent and they came back and they said they couldn't do anything because they can't regulate a government body. We're now moving into an era where I'm saying to you that 80% of my revenues are going to come from the government and they're telling me how much they're going to pay me. That is a monopsony.

    Angela Walker: 20:41

    But we do have regulators for energy prices and water prices and things like that, but they're arguing that they're not going to do that for childcare.

    Ian Morgan: 20:52

    No, because it's the government that are paying for the childcare. Energy regulators regulate energy companies, so it's for the consumers benefit. Here we're not the consumer, we're the supplier of a service, but it seems like the CMA aren't prepared to protect us.

    Angela Walker: 21:17

    We've talked a lot about how nurseries are appealing. What feedback do you get from parents?

    Ian Morgan: 21:24

    I think most parents are grateful for the hours, the funding that they get. I can tell you that on day one after the budget we had inquiries about all. I want to put my child down on the waiting list. He's not even born yet, but when he reaches one I want to make use of the hours. I think parents are grateful for it. I think most parents actually understand our issues.

    Angela Walker: 21:59

    I must say I'm the parent of a toddler myself. We used to have a great little preschool literally over the road that shut down, and my nearest preschool is on the other side of town and it's more than a 40 minute round trip in Russia. If I want to drop him off there and then just dropping him off and coming home will take me more than 40 minutes. There's a desperate shortage of preschool places and he's been on the list. I've got him on the waiting list for that preschool, even though it's miles away, because that's the only option I've got.

    Ian Morgan: 22:36

    I have waiting lists at both my nurseries for places in 2024 and 2025 and we are full and when people come to us, we have to let them down every single day because we only have very few sessions that we can offer people and for people that want to work, we mostly don't have enough sessions to make it work for them. So, yes, there is most probably a need for more places. I think nurseries have to be of a certain size to be viable, but we need to be paid a good rate to actually afford the staff because, as I said earlier, the staffing is our biggest single cost.

    Angela Walker: 23:29

    Ian, you've already complained to the competitions and markets authority about this monopsony. Is that something that you're going to take further?

    Ian Morgan: 23:38

    I think it's a line that we definitely have to follow. As the amount of childcare increases that the government are going to fund, it becomes more critical and their abuse of the market could be substantial. I think it's a very credible line to actually go back to the government and complain about So yes definitely.

    Angela Walker: 24:05

    So if you've got one message that you can give to the government today, what would that be?

    Ian Morgan: 24:13

    You need to drastically increase what we're being paid And don't go quoting figures, because we all know that what you quote isn't what we get. And it could work, but the likelihood is we'll be disappointed.

    Angela Walker: 24:36

    Are you optimistic about the future of childcare in this country?

    Ian Morgan: 24:42

    I am. I've been in this for 16 years now. I enjoy it. It's been a great career change for me And I wouldn't want to get out of it. I think if you have a business head on you, you can get through most things. At the moment, we need to be paid more. We need to find ways of returning more money to the settings so they can make profits and survive. Lots of people are getting out of this industry, but certainly I'm confident I'll be around for a lot longer.

    Angela Walker: 25:24

    Thank you very much for joining me.

    Ian Morgan: 25:25

    It's a pleasure, thank you.

    Angela Walker: 25:27

    I'm Angela Walker and I've been in conversation with Ian Morgan from the campaign group Champagne Nurseries, lemonade Funding and the director of Little Duckling's nursery in Berkshire. I hope you've enjoyed the show. For more information, check out my website on AngelaWalkerReportscom, where you'll find information about other podcasts in the series and you can see more of my work. And if you know someone who's inspirational or if there's a story that you think is underreported, drop me a line through my website. Until next time, take care.

    https://www.angelawalkerreports.com/

  • 17th July 2023

    What if you could overcome the limitations of a rare disability and achieve extraordinary feats? Join us for an inspiring conversation with Isaac Harvey MBE, who has done just that. Born with limbpelvic hypoplasia, Isaac has adapted to life without arms and short legs, using his feet as hands.

    In this episode, we explore his personal story, including the challenges he faced, his adventurous side, and his incredible achievements.

    We discuss Isaac's experiences growing up in Ilford, navigating public transport, and becoming involved with 'Wheels and Wheelchairs,' a group running in the streets of London. Hear how he conquered high-octane sports like abseiling, skiing, and sailing pushing himself to achieve his goals and inspiring others. And we'll find out about his recent MBE award, his upcoming events, and his new venture into media production with his company Seated Perspective.

    Finally, we delve into the power of motivation and self-belief, exploring how Isaac's determination and passion have helped him overcome setbacks and achieve the seemingly impossible. Discover the key to turning obstacles into opportunities and finding inner peace through struggles. Don't miss this uplifting episode that will leave you feeling inspired and motivated to face your own challenges head-on.

    Angela Walker: 0:14

    My guest today has sailed on a tall ship, thrown himself out of a plane, abseiled and skied Impressive stuff, but especially if someone born with a rare disability. He's a prominent disability campaign and he's not been made member of the British Empire for nothing. I'm journalist, Angela Walker, and this is my podcast, where I talk to inspirational people and discuss under-reported issues, and today I'm in conversation with Isaac Harvey MBE. Isaac, first of all, thanks for joining me, and I've been really looking forward to meeting you, because I've been watching all this stuff about you online and I've got so many questions to ask you, So thank you very much.

    Isaac Harvey: 0:55

    Yeah, thanks for having me. I look forward to the conversation we're going to have.

    Angela Walker: 1:01

    So it's hard to know where to start because you've done so much stuff. But can I ask you a bit about your disability, just for people listening, so we can get an understanding of what your achievements have been in context there?

    Isaac Harvey: 1:16

    Sure, so I was born with a disability called limpelvic hypoplasia, which means I have no arms and short legs. I have a weak pelvis so I'm not able to walk around, so I use my wheelchair, which is foot controlled, and I also have scoliosis, which is the curvature of the spine, and reflux, which is stomach problems and acid acidity. But, as you've mentioned in the beginning, it's not stopped me from doing a variety of different things.

    Angela Walker: 1:51

    It doesn't seem to be holding you back at all, and you do. You must have a lot of strength in your feet, actually, because you do so much using them. But like, how did you get that sort of dexterity and everything?

    Isaac Harvey: 2:06

    Well, it all started. So I started using my feet to do like drawings and stuff. I used to draw with my feet very basic pictures and I did some writing as well. And then I remember a friend of mine invited me to his house to play well, to just hang out and he had the PlayStation 1 there and I went over and I thought, oh, i want to have a go at this and I kind of put my feet in a like a certain position, lying down like this, and I managed to play games. And then that went on to playing PlayStation 2 as well because I got used to it. And then I transferred those skills to the laptop and that's how I use it with my feet. And I got Frank video games for driving games because I had kind of like the mindset of like a driver. So when I got my first electric wheelchair I was whizzing about not hitting anything. So in my house it's kind of like really tight corridors in some of the house and I was going through and it amazed the people who gave me the wheelchair because it was my first time driving a wheelchair. So yeah, it's just different skills that's come to one really.

    Angela Walker: 3:29

    I guess you must really have to look after your feet then. I mean, they're just so important to you.

    Isaac Harvey: 3:35

    Basically. Yeah, they're basically my hands. So yes, i do have to look after them.

    Angela Walker: 3:40

    You know I have damaged them through things, but yes, Do you do anything special, like do you have like physio on them and stuff like that to help you?

    Isaac Harvey: 3:50

    So I used to, so not really for my feet, but I did have physio on my back after the operations and the metal work which was put in my back, but not really for my feet.

    Angela Walker: 4:05

    Has that helped you with the scoliosis having that operation?

    Isaac Harvey: 4:10

    Yeah, so you know, if they caught it early on and if I didn't have done it I would have. It would have curved so much that I may have had really difficulty in breathing and uncomfortable in my back, but the other so that was good, but unfortunately it tilted my pelvis. So now whenever I sit, i get pain in my right leg and I've had so many different types of teetings but nothing seems to work. So it was either difficulty in breathing or the pain I have. So you know, gosh.

    Angela Walker: 4:46

    I'm sorry about that, yeah. I'm sorry to hear about that, gosh. I wonder if you could have like I guess you've tried to have like special seats made and stuff like that.

    Isaac Harvey: 4:57

    Yeah, different seats. I even had injections in to maybe strengthen them, but yeah, nothing seems to really work at the moment anyway.

    Angela Walker: 5:09

    Are you okay like kind of like reclining as you are chatting?

    Isaac Harvey: 5:13

    Yeah, so I'm lying down, i'm absolutely fine because there's no pressure on my leg. But once I'm sitting, that's when I get the pain. And I'm also someone because throughout my school life I used to take a lot of medication for it because I think we like the pain. But then, as you know, if you take too much medication there's side effects and things. So I kind of push through it. Now, unless it's really bad, then I take the medication. But yeah, i don't really like to campaign medication either.

    Angela Walker: 5:42

    Sure, sure. Well, tell me about some of these, like high octane sports you've been doing. You've been doing like ab sailing and skiing and sailing talk. Talk me through some of those highlights.

    Isaac Harvey: 5:57

    Sure. So the sailing came about. I think it's 2016. I got an email from my social worker at the time and she sent me an email saying, oh, they're doing accessible sailing in your area and they take wheelchairs and things. So I, oh, no, they do accessible sailing. So I emailed them. I said, oh, i'm a wheelchair user and these would be my needs. And they said, oh, unfortunately we don't take wheelchairs. So they then introduced me to another one called the Jubilee sailing trust and this was like a tool ship boats, like a pirate ship, and they they take all disabilities. So I thought, okay, that's really interesting. So I emailed saying my interest and you know, i'd love to take part in this voyage, as they like to call them, and they this is when I discovered it was like so They get half of the people, so the four people in the boat, half of them are people with disabilities and then the other half are people who don't know much about disabilities. So it's an opportunity for them to learn about varying people. So I thought, yeah, it was a great initiative and I wanted to get involved. And I emailed at the right time because they were about to do a collaboration with Barclays Bank and their staff members And they were going around the whole of the UK where different staff members would go on at different points, so different legs of the journey. So I got involved going from Cardiff to Bristol and it was a four-day voyage. These buddies are not your carers. So I had to bring my sister, who helped out. And Now the thing is I knew I had I get seasick. I thought I'd give it a go anyway, so I went on and it was all fine. And then when we came out of the docking into the main part of the water, the body of water, i Immediately felt like a real big sickness.

    Angela Walker: 8:15

    Oh yeah. So what would you do like. So it's like a pirate ship and so like four days, so you're sleeping, eating everything on this ship, on this ship. That's amazing, that's amazing.

    Isaac Harvey: 8:29

    Yeah, yeah. And you know, the really great thing is we have to do things like steering the boat, so you could do that with a foot control. I Got to go up in the mast, so they all flung me up to the top of the boat.

    Angela Walker: 8:45

    Amazing. How do they help you get to the top of the mast then?

    Isaac Harvey: 8:49

    so it's a big team effort and and um, they put the chair round ropes and then Everyone in the boat has to kind of pull me up, basically.

    Angela Walker: 9:03

    Are they all going heave, heave like a tug of war kind of thing?

    Isaac Harvey: 9:07

    Oh, yeah, yeah, Yeah, but this time everyone's on the same team.

    Angela Walker: 9:12

    Oh, that's brilliant. And when you're up there, were you like I'm loving this, or were you kind of thinking, oh, can you get me down now?

    Isaac Harvey: 9:20

    Um well, i don't mind heights, because Prior to that I've done a skydive, so Amazing.

    Angela Walker: 9:28

    I've done a skydive and I did enjoy that. But when I went abseiling, about halfway up, i just I just froze and I couldn't go any further And I went into this kind of crevice, like a sort of cave thing, and they were like right, you need to come down it. And I was like I can't, i can't, and they had to like basically rescue me Because I got stuck and I've never, i know and I don't know. I think it's because The year before that I went on this climbing wall and I fell and I scraped myself on this bit that was sticking out this overhang, and I didn't think it affected me at the time. I was like oh, you know, i'm okay, i've survived, i've got a glass of wine, i'll be alright. But it wasn't until I went and did this out of sailing that I kind of like had this sort of flashback. So I should probably try and do it again to maybe like overcome the fear.

    Isaac Harvey: 10:21

    Yes, that's what you got to do.

    Angela Walker: 10:23

    Oh Gosh, i'd do a skydive again, so tell me about that. How did you enjoy that, the skydive?

    Isaac Harvey: 10:32

    the thing is, again, my motion sickness played on me, but I was really looking forward to it. I was doing it for fundraising. I had to go to America to do it because no places here had to write equipment and, of course, helping safety Doesn't want me flying through the Parachutes. They needed it all safe and things. So I went to Ohio and did it and, yeah, it was a good experience. But as soon as I left the plane, just motion sickness got the best of me. People said it was because I was scared. I wasn't scared, but yeah, no, yeah, and I was at 14,000 feet.

    Angela Walker: 11:11

    Were you? was it like a tandem skydive, where you're like attached to somebody else? Yeah, yeah, that's like the one I did. So did they. I guess you couldn't do that with the wheelchair, they just strapped you on onto the instructor today.

    Isaac Harvey: 11:25

    So I was onto the instructor, but I know that there are ones where the wheelchair can go.

    Angela Walker: 11:31

    Wow, okay.

    Isaac Harvey: 11:32

    Yeah.

    Angela Walker: 11:33

    Yeah, that sounds kind of dangerous to me. Having this like metal wheelchair, like flying through the air I'm not sure I'd fancy that. That like on landing, that sounds like it could be a bit risky.

    Isaac Harvey: 11:47

    Absolutely Yes.

    Angela Walker: 11:49

    So you've done some really exciting stuff. Is there anything that you haven't done yet that you want to do?

    Isaac Harvey: 11:57

    I would like to try and do a wing walk. So that's the outside of the plane. I'm not done that. Yeah, i was about to do that last year But they didn't have to write on harnesses again. but they want to work with me so I can do it. So potentially in the future.

    Angela Walker: 12:14

    That'd be really cool. And have you thought about bungee jump? I?

    Isaac Harvey: 12:19

    Have and that terrifies me more than the skydive, but also because I have the metal work in my back. I don't want it to kind of have that joke.

    Angela Walker: 12:29

    Oh, yeah, yeah, Yeah, there is a big jolt. There was a big jolt. I did one in New Zealand about 15 years ago and, the fear did overcome me and they actually pushed me off And so when they shoved me, i just fell right down and there is a real yeah, there's definitely a real sort of jolt. It's not, it's not a gentle, yeah, it's quite, it's quite. I, i wouldn't do one again, if I'm honest, i'm not, i'm not so daring as you gosh. So let's come in talk about, because you're from Ilford actually, aren't you?

    Isaac Harvey: 13:07

    That's correct

    Angela Walker: 13:08

    which is is in East q is q q t omford R Romford to romford, which is enough ., so . enough up R RRRR Romford I grew up in romford. So, and what was it like growing up in, in Ilford?

    Isaac Harvey: 13:24

    Um, it was. So, yeah, growing up, public transport, for example, was a very difficult thing and traveling around Anywhere outside of Ilford just became quite difficult Because you know they'll steps onto the bus Stations definitely didn't have lifts Well many anyway. So you know that was a big Thing for me that I had to get taxis everywhere To get to places. And then when, eventually, when buses started to get accessible, i was so terrified I was like I've never done this before. I was like seven, eight, eight and I was going on these buses And I was oh, i don't like this my chair sliding all over the place. So that took me a while to overcome. But yeah, i'll put in my home and I'm just used to it. And, sadly, has decreased over time. You know it was quite nice But I I've been part of plans where there's to trying to regrow it and there's new restaurants opening now. So you know, in the near future I hope it'll be a nice place again and more people come and visit.

    Angela Walker: 14:41

    That will be nice. Is the exchange shopping centre there, because we used to like come along and hang out the E Rxchange back in the day.

    Isaac Harvey: 14:48

    That's still there? Yes, is it still there? Yeah, what?

    Angela Walker: 14:52

    and we used to go to this club called the island. I don't know if that's there now.

    Isaac Harvey: 14:57

    It is, but I don't think it's a club anymore.

    Angela Walker: 15:00

    Okay, i should go back and have a look at all my old haunts, shouldn't I?

    Isaac Harvey: 15:04

    I could could could t ta.

    Angela Walker: 15:05

    Yeah, you can take me on the tour. Yeah, down memory lane Oh my goodness Because. I remember when the exchange center in Neilford actually opened. That was Yeah, yeah, yeah, i'm a bit older than you, i think. Yeah, gosh. So I wanted to ask you about wheels and wheelchairs, because this is something that I've been watching Some of your videos online and it's a really good past time for people like you. Have got a like a great sense of adventure. Just tell us about wheels and wheelchairs, is it?

    Isaac Harvey: 15:40

    Yeah, so I'll give you a brief history of it. So wheels and wheelchairs started in 2012 after a French group Had been doing similar activities in Paris And they challenged themselves for their 10th anniversary to skate with wheelchair users to Paris, to London, for the beginning of the Paralympic Games. So they contacted skaters here. Skaters didn't really understand the concept and called them a little crazy because they'd never heard of anything like it before.

    Angela Walker: 16:13

    So yeah, just to explain, this is people on wheelchair people, people on roller skates Wheeling along, people in wheelchairs Yes, on the street. And the past Is that right, yeah?

    Isaac Harvey: 16:25

    So yeah, royal Skaters pushing wheelchair users with, like, specially adapted sports chairs with an additional front wheel which stops the wobble at the front of the wheels. So yeah, so they did this challenge. got to London and the London Skaters saw them coming, gave them like a big welcome and they were like, oh, actually, you know what, we should really start something here. So it started off taking out people in a hospice. first They went out and then it kind of grew into taking out more people with disabilities, and then I first heard about the group. So this was 2012. So I first heard about the group at the end of 2018 when I went to Winter Wonderland in Hyde Park, went on the ice rink in my electric wheelchair and I started talking to the ice marshal and we were just chatting away and then he said, oh, would you be interested in wheelchair roller skating? And I thought I've never heard of that before because I've done, you know, the other things that I've mentioned and plus a lot more. So I said, okay, that's really interesting. So I ended up getting in contact and getting to do the first skate in March in Battersea Park. Absolutely loved it, did a video on it as well, and the group really liked it. Then a week later did the Sunday stroll, and that's where like 200 to 300 skaters would skate the streets of London all marshaled and everything. But it was, and for my first ever one on a Sunday was the Easter skate. So everyone was dressed up in Easter costumes, bunny outfits all types of things And, yeah, it was really good, got involved, did the Paris Marathon, got to skate with the Paris group and Oh, you just said, like we did the Paris, we did the Paris Marathon.

    Angela Walker: 18:25

    You just threw it out there, did a marathon. Yeah, so like, how fast are you guys going? because it looks pretty rapid from the videos.

    Isaac Harvey: 18:37

    Oh, we can get to a high speed. I mean, i don't know if you've seen, when there's loads of people from behind, like we can have five people from behind pushing and we can go at some really big speeds.

    Angela Walker: 18:48

    Brilliant it looks like so much fun. Well, i want to put you in touch with my sister because she does roller derby Do you ever see a roller derby? and she's from the London Rockin' Rollers roller derby team And they are a bunch of tough ladies I would not mess with. And I was telling her all about wheels and wheelchairs and I said, oh, maybe I could put you in touch with Isaac and, like, you guys can all like meet up and maybe do some activity or something. So I don't know what you think about that idea.

    Isaac Harvey: 19:24

    I mean absolutely, why not? Yeah, especially in London, yeah sure.

    Angela Walker: 19:29

    Perfect. yeah, they're in London, so I will connect you guys because I think that would be really fun And I know that they're keen on doing lots of kind of fundraising activities and stuff like that. I'd like to connect you guys and then we can come and do another podcast and you can tell me all about it.

    Isaac Harvey: 19:46

    Yeah, absolutely yeah.

    Angela Walker: 19:50

    So how many people do you think you've got involved in wheels and wheelchairs now, because you're the president now, aren't you?

    Isaac Harvey: 19:56

    Yes, yes. So it was after that whole year and going to the annual general meeting that they asked me if I would like to take that position. And the thing is that So early the year the previous president sadly passed away for unforeseen circumstances. No one was expecting it And I didn't get to meet her. But throughout that whole year I felt like I did know her, because there were so many memories and how much she really meant to people and how she brought people together and spoke to people. It was like really lovely to hear. So when they asked me, i said I've got big shoes to fill. I said to you from the previous president but I thought you know, i see a vision, i can see this becoming something big. And yeah, i've kind of been helping with that driving force and we have a great committee and group. So yeah, we've, since I've joined, i mean we have, you know, about three more regular wheelchair users, more skaters have been willing to push our wheelchair users. But yeah, we've been growing slowly and we're continuing to grow And we've, you know, i had other people contact us and say, oh, i'd love to start a group here. So yeah, we're growing slowly.

    Angela Walker: 21:14

    That's brilliant. And have you got any kind of big events coming up, or are there any like new events that you might sort of start, do you reckon?

    Isaac Harvey: 21:23

    Yeah, So we have an event in Windsor Windsor Castle, They have. So there's an inclusive festival called parallel and we're doing a skate around Windsor Castle and we're going to be able to go where cyclists can't even go for this one day. So that's really exciting. We've got an event in Dornay Lake, which is also near Windsor. later this year We might go back to Berlin and do the marathon. So yeah, just all different types of events, and we've done some new events since I've been around too. So, yeah, this is good fun.

    Angela Walker: 22:04

    Dornay Lake will be a good one, because there's like a track that goes right around that lake, isn't there?

    Isaac Harvey: 22:09

    Yeah.

    Angela Walker: 22:10

    And that's really cool And I think they had a lot of the Olympic and Paralympic racing at. Dornay Lake, if I remember correctly. So yeah, that's a good one to do Brilliant And tell us about your MBE. When did that happen? When did that happen And how did it come about? Did you just get a letter or phone call?

    Isaac Harvey: 22:36

    Well, so, first of all, I didn't. You know, the last thing you ever think is you're going to get an MBE or anything of the sorts. But it was around November, I think it was, yeah, middle November. Sadly, I didn't get anything glamorous as a phone call or a letter, It was an email. They sent me an email saying you know, you've been put onto the New Year's King's Honours list and if you would like to accept this honour And immediately. You know, because I'm an internet safety contender for always is a scam, Because you know Oh. Because you never know True, especially when you're not expecting it as well. But when I read it, it was from a government email. So it was a legit email And then I told my mum about it And, yeah, she was happy And I bet she was.

    Angela Walker: 23:38

    What did she say?

    Isaac Harvey: 23:40

    Oh no, she was just very, very happy about it, and but it was one of those things. I couldn't say anything publicly, so I couldn't tell anyone else And I knew my mum wouldn't say anything, so I accepted it. And then they said oh, you know you, you'll be notified in the New Year when you're on the list, so. So I had like a whole month from not being able to say anything, which is really hard. I mean, i'm pretty good at not telling people things, but I think this was slightly more difficult, especially when you're around friends and you're chatting about and luckily I didn't slip up once, so that was good.

    Angela Walker: 24:22

    Was anyone like Isaac? you're looking really chirpy today. What's going on?

    Isaac Harvey: 24:29

    I think there was only one occasion where someone kind of saw that thing was up, but I didn't really spill the beans there. but yes, it's very close. But the thing is so I thought it was going to be announced on the 1st of January, so I was waiting for that. And then the very first came and I woke up and I got three messages from people saying, oh, i just saw you on the New Year's Kick, new Year's Honest list. I'm you know, congratulations on the NBE. I was like, oh gosh, it's out already. I didn't realize. So I was like, oh, i had to then think of a post that I wanted to post it before the New Year ended and announce it there. and then So, yeah, it was cool, because you know, for me I don't really do things for awards, accolades, but I think this and other things that I have achieved is like a statement. and so what can be done? if you put your mind to it and disabilities, you know you can still overcome things and have a fulfilling life. So yeah, i think it's for the bigger picture.

    Angela Walker: 25:39

    Yeah, definitely, definitely. And did you get to go up to like London to receive your NBE?

    Isaac Harvey: 25:45

    So I've not received it yet. I lots of people said, oh, you're probably going to get it in the summer. So I thought, ok, i'll wait till then. But then it was mid-May and I was thinking I've not heard anything, and I'm sure they would have told me by now if I was going to go, and So I thought they might have got the wrong email or they'd been trying to get in hold of me and they couldn't. So I scrambled around looking for emails and I did find one, and they told me that they haven't forgotten about me and there's 800 people on the waiting list.

    Angela Walker: 26:22

    Gosh, so there's a lot of waiting around for an NBE isn't there.

    Isaac Harvey: 26:27

    Yeah, yeah, that's what if the king is listening.

    Angela Walker: 26:29

    Can we please speed this up?

    Isaac Harvey: 26:32

    Absolutely yeah, i need it now.

    Angela Walker: 26:37

    But on it's on a serious note. You know, what you've done is like you've achieved so many things that people without disabilities wouldn't be able to do, and I think you are just making a statement in a way that, as you said, you can set your mind to something and, even though you've got these setbacks, you can still go out and achieve. What is it, isaac? do you think that's enabled you to go out and do all these amazing things, when it would have been probably a lot easier to go? oh, do you know what I'm just? I'm just not going to, i'm not going to bother, i'm just going to chill at home, like what's motivating you, what's helping you to get out there and do all this stuff? do you think?

    Isaac Harvey: 27:23

    I think the motivation has changed over time. At the beginning, and I think it's still to this day, it has been thanks to my friends and family and the people around me. I've always encouraged me to be the best person on myself and I've never really discouraged the crazy things that I decided to do. They always say, oh, if you want to, then you should go for it. So that's definitely helped When overcoming the challenges with my mental health and thinking that I would never be internally happy and have that inner peace. That was a journey in itself that took a long way to overcome, and once I came through the other side, it then made me realise that my disability is always being my strength, because, you know, disability has been the one thing that has got me up and out every day. I may have not been there mentally, but it's the disability that's helped me overcome the challenges, and I also believe that if it's there to be done, why not? I mean technology and different ways of doing things are out there. I see why not, and you know, when I did YouTube for many years and being able to film my journey and being able to show people what can be done, I think that can only be seen as a good thing, because there's loads of people through my LinkedIn and sometimes I have a platform say oh, I didn't know about that, you know, I may look into that and get involved. So it's a bit of a two-way street.

    Angela Walker: 28:57

    Yeah, i'm always seeing your updates on LinkedIn. I'm like what's he up to this time? Is he going now? Which countries are you going to? What action-packed day is Isaac having? But you know about the kind of you know mental health, because we talk about that more these days. Mental health and things that kind of you know bother us and do you think it's you know what made you? what mental health struggles have you overcome? It was it to do with you know you're so inspirational and you're doing all these amazing things And you think you've got pressure to keep on doing those things. Is that? is that what sort of troubled you?

    Isaac Harvey: 29:45

    So that was one of the aspects which got me quite down. Because, you know, back when I was really into social media and watching it all the time, you see celebrities and you think that they're only showing the good side. You see their lives and they see it's perfect or only good, and you, and back then I thought, oh, you know to be. If I want to be like that, i can't really be down, i can't be sad, i can't show people the downside. So I thought that was like the only thing I dealt with and everyone else was happy. So I didn't feel very open to talk about it. So it was like that vicious cycle of not being honest with myself, not being honest with my audience, and I'd only share positive things, even in videos I'd cut the bad parts because I thought I can't show that, because you know who's going to think I'm an inspiration if I shared something negative like that doesn't, that doesn't work. So that was that. Then, on top of that, i thought to be happy in life, you need to be in a relationship. So that was taking. A lot of that became quite blinding of what I was doing and I was really focused on getting into a relationship and I, i, oh, and I got to a point where, you know, if a girl just did something nice to me, i've ultimately ultimately thought that she liked me, so I would end up getting quite jealous when I found out that she had a relationship or she wasn't interested, and I'd get really hurt by it. And and then, and then, on top of that as well, as I mentioned, i did YouTube and I'd won a competition in 2017 which got me onto the television and I'd won an award where I'd had a YouTube mentor and I thought, okay, this is my big break. I'm gonna have a million followers, i'm gonna have loads of money and and all those kind of things. So three of those things came together and it got to a breaking point and I was like you know what I really need to learn about this and the mind and why I'm feeling like this. And for the first time, i took a step back and I remember the movie that I'd watched previously. I don't know if you've seen the movie Lucy no, i've not seen that. So it's Scarlett Johansson and she. She's got like drugs in her stomach, but it enhances her brain capacity and she uses more than 10% of her brain power and she's able to basically change her reality. So I don't know why this film came to Medivh. I thought you know, is that fantasy or is that real? so I searched in YouTube you know 10% of your brain and then that's where I came across the law of attraction and the guy called Bob Proctor talking about it, and that's where I came to a realization that how we think through and speak is the reality that we create, and I just really took it on board and started really learning about it. I thought it was quite fascinating and kind of changed my perspective on life and I had a different focus really. So, um, yeah, those different challenges came um all at once, but I think it was something that I'm grateful for, um and the age that I was this was about 25, and now I feel more internal happiness and inner peace, which is helpful did.

    Angela Walker: 33:15

    You was there like a turning point one day and you thought I'd think I need to talk to a professional about this, you know um, well, so I?

    Isaac Harvey: 33:28

    I didn't for that, but in school there was a period where teachers kind of saw, like what they saw something going on. So they gave me counselling and I had this counsellor and at the time, because I was young and I didn't really understand counselling, i thought, oh, you know this woman's, this random woman's asking me all of these questions and I don't understand why I'm doing this. It's a pointless exercise and I'm here for an hour talking about something and I didn't really give a really open and honest answers because I didn't see the point in it. But now, looking back at it, that could have been a real earlier turning point if I really utilized it and being able to talk to someone who wasn't someone I knew, um, but yeah, i after that I didn't really look to professional help, but I it was me who took that step it looks.

    Angela Walker: 34:26

    It sounds like they they did have your back, that they the school was kind of um, keeping an eye on your like welfare. Let's talk about your school, because your family sent you to like a mainstream school, didn't they?

    Isaac Harvey: 34:39

    yes, yeah, my mom always pushed me to go to mainstream um, it was the secondary, which was a little more difficult because I had my school near me, that could have just drove to, but at the time they didn't have lifts um to the order floors so I ended up having to go to another one um, and then at school transport which would take me to and from school, um, and they had learning support, assistants and uh, yeah, i mean, for the most part it was good um, and I had a lot of peers as well which were very helpful um. But I think after, when I got to A level, i think school life wasn't really for me. Um, i kind of was like I need to get out here and do my own thing now, um, because I've always had a creative mind. So, to be stuck in a throat like a box, i was like, oh, i need to really get out and do something different is that when you started in the video editing? yeah, so I did A level media um and I really loved doing that and um. In school they had Apple Max and um and they had a Final Cut Pro to do the video editing um and I had learning support assistants but some some of them went very good on the computer, so trying to explain to them how to video edit was like I'm not gonna have a good grade after all of this.

    Angela Walker: 36:12

    So I bet that was really frustrating, wasn't it? It?

    Isaac Harvey: 36:15

    was. It was very frustrating because you know some lessons.

    Angela Walker: 36:18

    You're trying to tell them what to do, and it was just very difficult they're supposed to be helping you, but then you're trying to help them to help you yeah, basically, yes, yeah, um.

    Isaac Harvey: 36:28

    So that was an obstacle in itself. But, um, the school saw this and they were like, okay, you know what? we're gonna give you software that you can use at home, um, and you can still do the work at home. So they gave me Premiere Pro for my PC, um, but the other problem was the school and you had to use Final Cut, but they didn't know how to use Premiere, so I had to self teach myself the whole editing software just to get great, um, but it's like I'm very grateful for because, um, i, i've learned the whole software and now I find it easy to learn something if I, if I'm stuck on something. So, yeah, so I've sort of myself the editing and that's how I took it on to YouTube and getting a camera through a filmmaker and because he saw my passion and that's how we all started.

    Angela Walker: 37:20

    20, 30, 2015 yeah gosh, it's a good job. You're so motivated because you know I struggle sometimes with these like online tutorials, when I'm trying to learn something new because we use Final Cut Pro at the BBC as well and I'm using it now but and there's so many things on there that you knew things to learn and new techniques and sometimes it's quite hard um with these tutorials and stuff.

    Isaac Harvey: 37:48

    So, yeah, you've got to be quite motivated to to get on with that yeah, i mean, i am someone who tries to find the shortest video as possible because I don't want to be watching a 20 minute video. But yeah, it's um.

    Angela Walker: 38:00

    Yeah, it's something, it's it's self-motivating sure, and you've done so many videos and vlogs, haven't you?

    Isaac Harvey: 38:08

    that's your passion, um so it was for a while, but then again, you know, with the breaking point I kind of lost motivation with YouTube, um, but now with my LinkedIn and what I've grown, now I want to get back into it in some degree and so what?

    Angela Walker: 38:26

    what are you doing now, then, that you're really passionate about?

    Isaac Harvey: 38:32

    I don't know. It keeps changing really, because obviously, the advocacy work is something that's really important Because, you know, i've built a platform and a lot of people do appreciate when I do change people's perspectives or share something that I'm using and people can use as well, like different technologies. So I think, in that regard, it's something that I probably will do for the rest of my life. It may take different forms of doing that, but I think that's something really good And I love sharing stories. That's something I really like doing. And the video editing and the content creation. I think I do want to bring that back, maybe doing more professional kind of vlogs for LinkedIn, showing a bit more of a behind the scenes of my life. I'd love to just get back into the video realm But if I do, i want a team rather than me doing it all again, because I think I don't want to lose that motivation.

    Angela Walker: 39:32

    Sure, sure, and it's nice to do stuff when you're running, but it's also nice to be with other people and do stuff, isn't it?

    Isaac Harvey: 39:39

    Absolutely yeah, I think that's how you get the new ideas and get the ideas flowing.

    Angela Walker: 39:47

    And I noticed you were at. Were you at some kind of convention the other day? Was it comic books, video games?

    Isaac Harvey: 39:53

    Oh, comic books.

    Angela Walker: 39:55

    Yeah, and I love seeing those things. Just, you're getting out and about and sharing your interests with other people who might think, oh, it might be quite a lot of hassle if I try and do this in my wheelchair, and is that why you like to do it?

    Isaac Harvey: 40:10

    Well, that one came around very randomly because my friend will mentor me up and he's recently moved to London and he said, oh, i've never been. Oh, no, we're gonna go, and we weren't sure what we're gonna do. And then he was like, oh, actually, comic-con's tomorrow. I said, oh, is it? And because I had not been since 2019. So I thought, yeah, let's go. I've not been for a while, it'd be good to see it And but I've been before and I've actually created music videos of the people in costume, which is always great to see. So, yeah, i think it's just to see people's passion and the creativity that people bring to their costumes. I think it's really inspiring.

    Angela Walker: 40:56

    You were talking, you mentioned your mum a couple of times.

    Isaac Harvey: 41:00

    Oh yeah.

    Angela Walker: 41:01

    Tell me about your mum, because she sounds like an amazing woman actually in the way that she's really helped you to. You said she's helped you to be the best that you can.

    Isaac Harvey: 41:13

    Yeah, i mean, mum's been someone who doesn't stop as well And I think that's given me the real big strength of not giving up and always pushing the boundaries of what can be done, and she's just treated me like everyone else and really she's got really kind soul and it really takes a lot of time out of the way to help people, but also she's someone who said it how it is and that's the thing I do appreciate as well. So, yeah, i think I think people say tough love, but I think it's good to have both sides, because that's another thing you know through my journey is being honest and being real about things is like the best thing you can do about yourself and with others. Not always easy, but it's always the best thing to do.

    Angela Walker: 42:13

    Have you had other people with disabilities who've sort of come to you and said, oh, how can you be so motivated, how do you do all this stuff?

    Isaac Harvey: 42:22

    Yeah, i mean, i get it quite a lot on my well, sometimes through my LinkedIn comments and even some friends. Yeah, i mean, and it's difficult because of people's different circumstances and their belief systems as well, because you know, i do try and help and you know, when people do feel unmotivated, it kind of brings a mirror image of how I used to be as well, and how I was someone who didn't really want to listen and then get really motivated. So you know it's difficult, but I do try my best to show people like this is what can be done, and you know you got your mind to it and I also try and people not to compare themselves with me, because you know we all have our own lives. Because you know, i have someone who says, oh, i want to do all you do and I want to get awards and stuff like that, and I say you know you got to kind of like your own path, because they're kind of comparing like I'm doing these great things and they're not doing it, but in what they're doing, i'm sure they're doing great work, but they just don't realize that they are. So, yeah, and and the other thing is, you know I might be able to do these things, but it does come with its challenges. It's not like I wake up and I've gone sailing or I've gone skiing, like it comes with a lot of challenges and a lot to the journey. So you know, i try and show that as well like it's not easy to do these things either.

    Angela Walker: 43:59

    When you say challenges, what kind of challenges?

    Isaac Harvey: 44:03

    I mean, well, we could go back to the skydive. Like for me to just do the skydive, i couldn't do it in this country, emailed at least 20 different airfields couldn't do it. Went to different charities. They gave me contacts and they weren't getting back until someone said America. So then I'd email America and then they said they could do it and then it's someone to come with me because it would be in a 10-day trip there. So I had someone who could assist me for 10 days. Someone helped me with the packing. Like I said, i get leg pain, so sitting on a seven hour flight wasn't very the most comfortable, so I have to go through that and make sure that my wheelchair, the transport is okay to and from the airport. It's just like so much that has to be four hours, not just oh, i'm going to go to America tomorrow. I just get on a flight like it doesn't really work out like that. There's so many obstacles. But not saying it's hard because you know I'm used to it now. It's just I could, i could sit it to be more long-winded than it to be hard, like it's quite fairly easy once you know what you're doing.

    Angela Walker: 45:15

    It's just can't, can be quite long-winded well, i think what shines through is that is, you're just determined, you think, well, i'm going to do a skydive, and then you make that happen, and that's. That's not easy with all that kind of bureaucracy and red tape and, like you said, health and safety and stuff like that. So so, what's next for Isaac? what are you, what are you planning now?

    Isaac Harvey: 45:40

    what is next? um see, the thing is so, for the past two, three years I've kind of not had any like new years resolutions. I've kind of just gone with the flow, and that's allowed me to kind of have a bit more of an open mind, because, you know, being a model for adaptive clothing wasn't on the bucket list and therefore I'd ever be a model. I took the make-up of the fashion industry. I never understood it, but here I am being in Vogue, british Vogue, which was kind of like, again, something I never expected this year.

    Angela Walker: 46:19

    That's cool. That's pretty good. Is that been out yet? Is it out now?

    Isaac Harvey: 46:22

    Yeah, so that was in May's edition. Yeah, that was in May and that was because of London Fashion Week and being on the catwalk in February. So you know, it's stuff like that, like an MBE and all these things. That it's the stuff I didn't do, never would have imagined. So I'm just kind of going with the flow. I think one of the main things that I am going to concentrate on is seated perspective, so that's a company me and another disability advocate, a cat. I've come together where we saw a gap in the market, where places which do really good accessibility but they don't have videos.

    Angela Walker: 47:03

    So we want to offer that service to them and create videos for these different venues, hotels, organizations and not only will it inspire venues to know why it's so important, but also for people with disabilities to know what's out there That sounds really good and it's nice sometimes to go with the flow, as you said, because especially when you've been in a place where you've felt under a lot of pressure and you've had to like come back from that, sometimes it's good to not have too much, you know, set in stone. You can just be free and kind of take it as it comes. Modelling for Vogue, you know, it's really cool. It's really cool, isaac, thank you so much for joining me. It's been a real pleasure and I've really liked talking to you. Thank you so much. Have you got any final advice for people with disabilities that might be listening, might be maybe they're struggling with their mindset at the moment, or lacking motivation or worried, or does any message at all?

    Isaac Harvey: 48:06

    Yeah, i think the age old saying that it's okay not to be okay, being honest about how you feel, because there's always someone out there willing to listen. and one final piece of advice is always be yourself, because who else is going to do it?

    Angela Walker: 48:25

    Isaac, thank you so much you're welcome.

    Isaac Harvey: 48:27

    Thank you for having me.

    Angela Walker: 48:30

    I'm Angela Walker and I've been in conversation with Isaac Harvey MBE and I hope you've enjoyed the show. For more information, check out my website, angelawalkareportscom, where you'll find information about other podcasts in the series and you can see more of my work. And if you know someone who's inspirational or if there's a story you think is under reported, then drop me a line through my website. I look forward to hearing from you. Until next time, take care.

    https://www.angelawalkerreports.com/

  • 10th July 2023

    When faced with the reality of not being able to provide basic essentials for your child, where do you turn for help? In our heartfelt conversation with Emma Cantrell, founder and CEO of Children's Charity First Days, we uncover the shocking statistics surrounding child poverty and food insecurity in the UK. Emma shares the touching story of how First Days began and its growth over the past decade, now supporting over 10,000 children living in poverty by distributing more than 250 tonnes of donated goods.

    We discuss the vital role of providing children with brand new items on their first day of school, granting them a sense of agency and belonging. Emma sheds light on the challenges of supplying school uniforms amidst rising costs and the disturbing fact that 20% of adults in the UK have experienced food insecurity. We delve into the impact of this crisis on families and their children's well-being and future prospects.

    In this episode, Emma also shares her insights on how First Days Charity not only meets the basic needs of impoverished families but builds relationships with them to ensure they receive the help they deserve. We explore the inspiring ways the local community comes together to support those in need, as well as the importance of breaking down the stigma around asking for help. Join us for this inspiring and eye-opening conversation with Emma Cantrell, a true champion for children in need.

    Angela Walker: 0:15

    More than 4 million children in the UK are living in poverty. One in five adults experienced food insecurity last year. That was before food inflation rose to 17%. This is according to the Office for National Statistics. My guest today has helped over 10,000 children living in poverty and she has distributed more than 250 tonnes of donated goods. I'm journalist, angela Walker, and in my podcast I interview inspirational people and discuss under reported issues. Today, i'm in conversation with Emma Cantrell, the founder and CEO of Children's Charity First Days. Emma Cantrell, thanks so much for joining me. Pleasure, it's lovely to be here, thank you. So you started First Days Charity in 2013, why?

    Emma Cantrell: 1:08

    Well, i've always worked with vulnerable people. I started my career after university working in drug and alcohol treatment, and I was always really drawn to the families who we worked with. I went on to work in a London borough which had huge levels of deprivation and then I had my own children and I moved out to Berkshire. I got involved in the local community and I was really aware that there was this big problem where especially single parents just couldn't afford the basics push chairs, cots, that sort of thing. That's quite expensive. Then I had my second child and all my neighbours came along with bin bags full of baby clothes, offering all this stuff. They were emptying their lofts. My husband called it middle class fly tipping at the time, which I thought was very funny, but it was just very well meaning wanting to pass on their baby stuff, and I remember really clearly sitting there thinking I do not need this stuff, but I know that there are people literally around the corner who do So. It just needs to become a broker between the two. Now that was 10 years ago and baby banks didn't really exist. Then Baby banks were just beginning to become a bit more part of society because of austerity and all of those things, but baby banks didn't really exist. So I set up this, essentially the middleman You give me your stuff, i'll find the people who need it. And people looked at me like I was crazy, like why would you be doing this? And sadly, over the last 10 years, the charity has grown, the need has grown exponentially and we've really embedded ourselves in the community, now supporting families, and it's just got huge.

    Angela Walker: 2:52

    So how many people have you helped? What kind of stuff have you passed on?

    Emma Cantrell: 2:57

    So pre-pandemic we were helping 2,000 children a year, something like that. We were passing on baby stuff nappies, toiletries, prams, cots, some beds and some school uniform. And then during the pandemic we were asked by the local authority to run a food distribution hub. So we were giving out thousands of food parcels and that really increased the awareness of our services in the community, which meant loads more people put their hands up to ask for help. So just in the last year alone we've supported 8,000 children in the area. So the demand has just mushroomed. But what we now do is we work directly with families so we get alongside them, we meet their basic needs. So someone will come to us because they need a school blazer, because their child's lost their blazer at school and they're getting in trouble. And then we'll talk to the family and we'll find out that it's never just a blazer, it's never just a pair of shoes. There's always so much more going on that we can help with because there's a lot of support in the community. But often people just are overwhelmed and don't know where to turn. So a lot of our time now is spent talking to parents, supporting them, trying to find ways that they can navigate through their difficulties.

    Angela Walker: 4:18

    And what happens if somebody wants assistance? Do they have to qualify? Do they have to be on some kind of benefit? How does it work?

    Emma Cantrell: 4:27

    No, so we used to. Just people used to come to us via professionals. So up until two or three years ago people would come to us, referred by a social worker, a housing officer of their school, and they still do sometimes come to us that way. But now we have a team who, when a family says actually is brave enough to put their hand up and say, actually I need some help, our team will speak to them, give them a call, find out what's going on at home and do kind of an assessment over the phone. So you don't have to be on any sort of qualifying benefits although most people are because actually sometimes we get phone calls from people who say look, my husband's lost his job, we're struggling to even pay the mortgage or the rent, we don't want to get into debt and we just we can't get over this hurdle of needing whatever this expensive item is. Is there something you can do? And actually, if we said that they had to wait until they'd lost their home, were on benefits, all of those things when we could actually prevent that spiral from happening. So what we do is we build relationships, we get to know people and then you really understand the need and people don't want to spend 10, 15 minutes on the phone to you if they're not in desperate need. So it kind of that building relationship having a phone call. We're ensuring that the people who need the help the most get it.

    Angela Walker: 5:53

    How do people find approaching you? Is there a stigma around coming forward and saying I don't have enough money to buy my child a school uniform? I mean that is hard.

    Emma Cantrell: 6:03

    I don't think there's a parent who exists who wants to put their hand up and say I can't provide the basics for my children. The thought of not being able to give my own children the things they need you know, not the things they want, the things they desperately need is heartbreaking and it is really hard to approach a charity, definitely. But what we do is we we try and reduce that stigma as much as possible. So one of the things we do is we have a van kitted out with essentials that goes into the community. So we know where there's a high level of need and we'll go with that van And it's. There's no expectations. We just talk to people. We show them that we are humans like them. We just wanna help. You know there's no big forms. You have to stand there filling in. You don't have to declare your life history. It's just we're here to get to know you and help. So we try and build relationships to reduce that stigma. And the other thing we do is we're really open about the fact and that's become easier in this cost living crisis that life's just really expensive And we try and tell people and spread that message as much as possible that it's not your fault, you know it's so often because we live in this lovely area, but it's really expensive to live here And if people, if this is where people have been brought up, it's where their support network is, just because they've fallen on hard times, you know. It doesn't that's because life's expensive, you know, and it's trying to mum guilt is a massive thing, isn't it? You know, trying to reduce that level of guilt for parents and free them from that shame that they're feeling when they come to a charity is top of our agenda, because that's the only way they can kind of look to the future and look forwards and rebuild things.

    Angela Walker: 7:48

    I think the stigma of having second hand or pre-loved stuff, i think that's diminished a bit actually because people are getting into recycling and I think they're more open to the idea of saying well, actually, my kids outgrown these trainers in like two months. They're hardly worn let's pass them on, you know.

    Emma Cantrell: 8:08

    Definitely, I think it has. I think there's a really big thing there where, if you choose to put your child in second hand but you could put them in something brand new, you've got an element of agency over that decision, whereas if all you are offered or all you can get your hands on is something second hand, you feel like that choice has been taken away from you. So I think something we do with school uniform when a child starts in year seven is make sure that there are a number of items that they get brand new. So we have funding where we can buy brand new school blazers, shoes, those things that really would. You would look different or feel different from your peers on that first day of school. But what we find is, once the child gets older, the child and the parents don't mind if it's second hand or not, because they realize that it's gonna look second hand within 20 minutes anyway being at school As a parent, i concur, so yeah, it's definitely changed And I think certainly what we'd like to do is expand our services so that everyone could come and but if you can afford to buy second hand, you could come to us and get it, and that funding would then cover the cost of providing stuff to people who can't afford it, because I think there is an appetite for passing things on and with the climate and fast fashion and those things, there is definitely an appetite for choosing pre-loved.

    Angela Walker: 9:33

    You mentioned earlier about the fact that we're lucky enough to live in an affluent area. We're in leafy barks here. People might be surprised that there are people here living in poverty. What's the scale of it?

    Emma Cantrell: 9:45

    It's do you know what? There's two different groups of people. So there are people who, when the government statistics are below the poverty line and in Berkshire that's 45,000 children live below the poverty line, which means that their parents, after they've paid for their housing and their utilities, have less than 19 pounds a day to live on for food, technology, transport, clothes, whatever it is in the home and to get to work and all of those things. And that is a really really high level of need. And those are people who come to us and they can't afford anything Any school uniforms, any beds, because of beds broken or child's outgrown it. And then there's this group of people and over the last year this group has got hugely bigger Who were I think Theresa May coined the just about managing phase a long time ago, but it is those ones who were surviving, just about really really good at budgeting, really good at managing money, but the cost of living and one tiny little thing going up or, as we've experienced now, 10 things going up it's pushed people into a situation where they, where they could have afforded school uniform last year and this year they can't. And that's the situation we're in now is we're having families come to us saying I can't believe I've had to come to a charity, but I've just, i've got nowhere else to turn. I can't borrow money off my family because they've got no money either. You know, i've maxed out the overdraft or whatever. And it's that's the group that are growing and growing, and growing And we can't see an end in sight with that. Prices aren't going down, so we've had petrol prices.

    Angela Walker: 11:25

    we've got fuel prices and now we've got food prices going up, and I wanted to talk to you about food insecurity. I just wanna give the official definition of that according to the Office for National Statistics. So adults were classed as having experienced some form of food insecurity if they reported experiencing one or more of the following Running out of food and being unable to afford to buy more in the past two weeks. being very or somewhat worried in the past two weeks that their food would run out before they got money to buy more. And definitely or tending to disagree that they or their household could afford to eat a balanced diet. And 20% of adults now are classed as having some form of food insecurity. And what effect is that having on families, do you think?

    Emma Cantrell: 12:17

    It's huge. And I'm telling you now, parents will not eat so that their children can eat. That is that happens. We hear about that all the time And it has a huge effect. You know, we know the evidence is so strong of the effect of hunger, of or on children of hunger. It's huge. Children who are hungry or malnourished do not do as well at school, they are not as healthy, they have a lower life expectancy, and the fact that, as you say, 20% of adults are experiencing this food insecurity is so, so worrying. And I mean it's not, it's not just what you would expect. This isn't people in the worst places, with the highest levels of deprivation, who have an empty cupboard. This is people who are working. I mean our local food bank. They regularly have nurses, teaching assistants, care assistants coming to them because their cupboards are bare, and it has a huge impact. And it has a really big impact on children because that feeling of insecurity, that nervousness, that heightened levels of cortisol and all those negative hormones in their bodies it affects their brain development, and not just now, forever. So it's really, really important that we protect children and we make the household safe, and that includes food, that includes a safe place to sleep includes somewhere to do your homework. All of those things are so important because we're storing up a whole load of problems for the future, because all of these children are gonna be adults soon.

    Angela Walker: 13:59

    And, of course, kids pick up on our anxieties. I mean, every time I go to the supermarket I'm surprised, i'm shocked by how much things have gone up basic things, milk, eggs, bread And I'm lucky enough that my husband and I both have an income, but you know this and the price of energy. It's quite shocking. On your website you state our aim for the charity is very clear we want to close our doors because no one needs our service anymore. Emma, how close are you to being able to do that?

    Emma Cantrell: 14:35

    So, so so painfully far away. I would like nothing more than to be able to turn around to my team and say sorry, guys, you're gonna have to find new jobs, you know, find new things to do. We are. No one needs us. No one should have to come to a charity to ask for help with the basics and essentials. But we're so far away. Demand for what we are providing is way higher than we will ever be able to meet. You know, we have people who we have to turn away with. There are and especially this year, there are gonna be children who we are gonna have to say no, i'm sorry, you can't have school shoes, we don't have any, we don't have the resources. Which breaks my heart, because when you set up a charity and when you work in a charity, you really, really care about it, and I love the families we support and I love the community we work in, and to not be able to provide everything that we want to be able to for families is heartbreaking. I can see it in your, i can see it in your eyes and I can hear it in your voice.

    Angela Walker: 15:46

    It's really upsetting you, because you wanted this to be a short-term stop to charity, to help people, and now it's escalating, isn't it? Well, and that's the thing.

    Emma Cantrell: 15:57

    No one should be relying on charity ever. So do you know what Things go wrong in life, don't they? Relationships break down, someone loses a job, you know, the car breaks down and you have to replace it with a boiler, breaks or whatever it is, and that's when charities should be able to step in. For that one time, let us help. You know we can help you with these things, we can point you in the right direction, and that's the work we want to do. We don't want the mums coming back to us week after week for nappies and wipes because they can't afford them. Or last two weeks ago, a mum came to our outreach van and just said quite nonchalantly to one of the team oh, have you got any period products? You know, because we well, me and my daughter have been using socks, and my colleague said she inwardly was just this gasp, because this woman was absolutely blasé about the fact that her and her daughter, a teenage daughter, was going to school using socks instead of proper hygienic period products. Thankfully we were able to help. But what has become of the world, of this society, if someone can't afford that absolute, essential basic?

    Angela Walker: 17:17

    And that it's become so normal for them. Yeah, that was the thing That they happen to make do without a sadditary product.

    Emma Cantrell: 17:23

    Yeah, that was the thing that absolutely shocked my team And we've become quite unshockable, but it really caused us to stop and think this is desperate because it felt so normal for that family And that's nothing normal about that or there shouldn't be. It should be outrageous. We should be shouting from the rooftops about it. So, yeah, I think that's the thing that is so upsetting. We don't want people to have to keep coming back. We don't want to be here. We don't want to be handing out basics that you should be able to afford out of your own pocket.

    Angela Walker: 18:03

    So what can we do as a society to try and turn things around and make sure that there are fewer families living in poverty?

    Emma Cantrell: 18:10

    I think, from a kind of societal point of view, certainly we need to have a lot more respect for the role of parents as a form of labour, as a work. It's a job to be, the fact that you're expected to have, if you're lucky enough to have two parents in the home, for them both to be working full time, both be bringing income and that be enough to provide the fact that often that isn't enough, then still to provide for families. I think we need to take a lot more seriously the role of and it is often mothers who are the primary caregiver and what the economic value of that, and the fact that it's a hugely valuable role and maybe there is something that could change in the benefit system that values that better. But essentially, people need more money in their pockets. We need higher wages or lower costs. In every business, you either decrease your costs or you increase your income. The household budget is no different. Families need more money. The benefit system isn't fit for purpose, but wages aren't fit for purpose. Over 50% of the families we support are in work. This isn't a whole generation of children who are being bought up in houses that rely purely on state benefits. This is children whose parents work and they still can't make ends meet.

    Angela Walker: 19:39

    A generation ago, one salary was normally enough to support the family, and if mum, because it would normally be dad that went out to work and if mum went out to work it was a bit of extra money. But now most households they couldn't survive on just one salary. It's not optional. And then on top of that you've got childcare costs.

    Emma Cantrell: 20:00

    Oh, and that's the next thing that has to change, and I think there's a growing momentum around this issue of childcare costs. I can remember in my situation I was working and I was working in when my two children were little. I was working in the evenings to top up the costs of the childcare because I wanted to keep my job, because I loved my job, but I wasn't being paid enough even to cover the childcare. So I was then working an evening job to pay that, which is wild. How can that be? It's not sustainable. It wasn't sustainable. It made me quite ill. But the childcare we need to take childcare so much more seriously, and if the government are absolutely hellbent on getting parents back into work, then it needs to make financial sense, otherwise they're not going to do it. That's so true. That's so true. Child care costs are just too high for a lot of I mean certainly a lot of the mums we support to be able to work, and it's just, but it's very difficult because they're also being told by the Job Center once their children have got over a certain age. You need to be spending 30 hours a week job searching. It's like, okay, where is that time coming from. I'm not paid to do it, i don't have child care whilst I'm doing it. You know what is it's so it feels. I know a lot of the parents we support just tell us that they feel trapped. They just feel trapped in a system that isn't designed to support them and they don't know what it's there for you, they don't know who it's. There's a real growing sense of injustice amongst the families we support. That it's just not fair. You know they're not given a fair crack at things because every time they try and do something, you know benefits are taken away, changed, they've been overpaid and have to repay. You know they're living in inadequate housing and overcrowded and it just doesn't. Life just doesn't feel hopeful.

    Angela Walker: 21:55

    What do you think these families would do if your charity wasn't there to help them?

    Emma Cantrell: 22:00

    So we ask that question to parents. We do a lot of kind of surveys and get feedback, because that's how we improve what we're doing, and the most recent survey we did, parents said two things. Firstly, they would just have to go without. They personally would have to go without. So I mean and by go without what I mean is we had a family who the mum and the daughter shared a coat. So in the cold winter they would decide each morning whether the daughter needed the coat at school, or if she could find a radiator and stay inside at break time, or because the mum needed to walk to the shops, could she have the coat that day. So we were thankfully able to give mum a coat, but they that is what I mean. by going without, you know, i don't mean going without luxuries or nice to have things, or, and this is more worrying a huge proportion Over 40% said they simply wouldn't pay bills, so they wouldn't pay their gas and electric bill and they wouldn't pay their council tax. and the minute you start getting into that situation, a £10 debt becomes a £100 debt, which becomes £1,000, which means you're getting evicted or your electricity is being switched off or all of those things. So what we are trying to do, as best we can, is prevent people from going into that spiral of debt of, you know, borrowing money. There's plenty of people who will try and lend money in a really expensive and unethical, immoral way, and families are vulnerable to that because they need to buy essentials, they need to feed their kids and clothe them. So I think without us, there would be increased levels of debt and there would be people who would just simply be going without going, without food, going without clothes, going without heating, those essentials that so many of us take for granted.

    Angela Walker: 23:57

    And we've talked a lot about the families that you help, but the other side of this is all the great people who are donating the items that enable you to pass them on to help these families. So let's talk a bit about them, yeah, now this is fantastic.

    Emma Cantrell: 24:14

    So we've said a few times we live in this affluent area and sometimes areas like Berkshire have got a bad reputation because there's an assumption that people are wealthy because they're selfish or because they don't want to, and you know they've got this kind of I'm okay, i won't help you attitude. We have experienced the opposite of that. People really want to help all the time and what we've created is this vehicle that people can help and it's really tangible and there's something really moving about people knowing that their stuff is going to be in their community and stay within their community and be used by someone else. And actually, when I had a double buggy for my two children and when I finished with it, obviously I donated it to my charity and we had a guy coming to see us to pick up some he needed. He was a single dad twins really, really tragic situation. He had these two-year-old twins and we'd been helping him over a period of months and he was coming along to our office to pick up something that he needed for them and my colleagues said, oh, such and such is coming along to pick up this stuff. Oh, all right, okay. And then I saw this guy walking down the pavement and I thought he's got my buggy and honestly I could tear up thinking about it now because it was so moving to see that guy and I said oh. I said, oh, nice buggy. And he said, oh, do you know what? I didn't leave my house for two weeks before I got this with these twins and those twins were wild and he's, you know, two-year-old boys, two of them. And he said, he said I couldn't leave the house because I just couldn't contain them. And then you guys drop this off and now I can go to the baby groups, i can go down the shops and that is the, you know. And that's because I mean it happened to be my buggy. But every single person who has donated something, it's improved someone else's life and I and I think people know that and they trust us that when they're giving us their stuff, it's going on to improve someone else's life in our community, which is good for everyone. And you know, people do. We've got loads of volunteers who turn up every single week and they do things like iron, you know. They turn up an iron for three hours and think, gosh, i always, you know, joke with them like do you not have enough of this sort of thing at home, but they love it. You know, it's just a. It's great because it's giving back and I think there's a big thing about being aware of your privilege, and there's so many people in our community who are well aware of the fact that they're okay and the fact that we can highlight that there are some people who aren't, but this is how you can help. It's not a helpless situation, it's brilliant, and people jump at the chance that we are surrounded by good people and I don't think we talk about that enough like there are so many good people doing good things everywhere and talking about good people.

    Angela Walker: 27:10

    I mean, you've helped so many people, emma, and you've got some amazing news because your contribution to society, to all these impoverished families that you've been helping for the past 10 years, is being officially recognised.

    Emma Cantrell: 27:24

    Yes, I got this letter, which I it was really funny. It arrived in an envelope that said on his majesty service, and my partner rung me and said um uh, you've got this, you've got this letter. It looks quite official, have you? and I thought what have I done wrong?

    Angela Walker: 27:42

    oh my goodness yeah, totally.

    Emma Cantrell: 27:44

    So I zoomed home from work to have a look and, yes, i have been honoured in the king's birthday honours with an mbe. So do you know what it's really? it's really, really interesting because, um, i I thought I opened it and I felt immediately a bit embarrassed, like, oh my goodness, this is a team effort, you know, but actually If more people like me were recognised in this way and we could elevate the stories and talk about ordinary people who have just decided to do something good and give a lot of you know I won't lie, it's a huge amount of time and effort and energy and emotion and everything to this to a good cause. We need to highlight that all the time There should be. You know, everyone on that list should be being celebrated for doing good things. So I'm really and you know that it's been awarded to me for services to vulnerable children and people and that really got to me and I thought you know how amazing to see that in print, to see that and to have that recognised. And if more people like me, who are doing this work every single day, looking after vulnerable people, can be recognised.

    Angela Walker: 28:57

    I think it's brilliant. You've touched so many lives and now it's been recognised, so congratulations. That is amazing. When you set this charity up 10 years ago, did you ever imagine that it would escalate to this scale and that you'd, you know, get an MBE for your services?

    Emma Cantrell: 29:15

    No, not in a million years. So I set the charity up. I wasn't planning on working full time for the charity or anything. It was a project, kind of in my spare time to do some good. And I actually went away and worked for a couple of other big charities and kind of learnt how to do this job whilst first days was growing and I was still very much involved in it. But I never imagined that it would get to the scale it's got to and I do. Sometimes it's really interesting because I sit in our you know, we've got offices in a warehouse and I look around and think I can't quite believe that I created this whole thing. But I did. And it's a real like bittersweet thing because it's fantastic that we are there, but it's devastating that we are there as well and we shouldn't be. But I am, i never thought it would grow to this. I never, ever thought anyone would, you know, give me a nod and say well done in public. So I'm really, really pleased and you know it is a team effort, but I am, i'm really pleased that we've been able to grow it and do the work that we do.

    Angela Walker: 30:22

    And have you got any message? for you know people in Parliament, those people in power who you know. They're the only ones really in a position to help change things around. What should they be doing?

    Emma Cantrell: 30:33

    So the first thing, they need to do is speak to people on the ground. We know what's going on, you know, and I think there's such a disconnect between policy that comes out of Whitehall and what is happening on the ground And there needs to be so much closer working with what is going, what is going on on the ground. And I think the other thing I would ask is there needs to be compassion and empathy at the centre of every policy. You know you can bandy about big numbers 45,000 children live below the poverty line in Berkshire, but that's 45,000 individual children with one life to lead. And I think if policy can be created and change can be made, it's full of compassion and empathy and has those children and their one life at the centre of it, that will surely change how we treat people. And I think you know there's that saying that we should be judged by how we treat each individual. And I know that the system treats so many families so badly And that's what we are judged on as society. That's the. You know how we are being held up And I think I think if we can create a lot more compassion, a lot more empathy, a lot more understanding, then that will change. And you know, get more money in people's pockets. That's what's needed. We all want to be in a thriving, happy environment And sadly, that money does contribute to that.

    Angela Walker: 32:04

    And if anybody's listening and they would like assistance from your charity First Days, how can they go about it?

    Emma Cantrell: 32:10

    So they can go on our website and just fill out a form. It's a really simple inquiry form. It doesn't ask for your life story And one of the team will give you a call. and they are fantastic. They are the I have to not I have to leave the office when they're making calls, because I just love listening to them and I don't get any work done because they're so kind and so friendly and so welcoming and understanding. So they'll give you a call or you can ring us as well and ask for help. And if that feels like too much and you've got, you know a teacher at school you trust or whatever, speak to them and get them to get in touch with us, because there's loads we can do to help. And it is scary to put your hand up and ask for help definitely, but it's so worth it And I can promise a really nice experience. It's, you know, it's not scary and it's not. you don't have to kind of bear all to anyone. It's you know, it's very, very dignified experience.

    Angela Walker: 33:06

    Emma Cantrell, thank you so much for joining me. You are an inspiration. Oh thank you. I'm Angela Walker and I've been in conversation with Emma Cantrell, mbe, founder of the First Days Children's Charity. I hope you enjoyed the show And if you want to find out more, check out my website on wwwangelawalkerreportscom, where you'll find more information about other podcasts. And if you know someone who's inspirational or if there's an under-reported story you'd like to see me investigate, then please drop me a line through the website. Until next time, take care.

    #ChildPovertyUK #FoodInsecurity #ChildrensCharity #FirstDays #HelpingChildren #CommunitySupport #ChildWellbeing #EducationMatters #BasicNeeds #SupportingFamilies #BuildingConnections #InspiringChange #ChildhoodPoverty #GivingBack #CommunitySolidarity #BreakTheStigma #EmpowerChildren #MakingADifference #ChildAdvocacy #UKCharities #ChildhoodInequality #FutureProspects #SocialImpact #PovertyAwareness

  • 3rd July 2023

    Thousands of people were infected with HIV and Hepatitis after being given contaminated blood by the NHS in the 1970s and 80s. Many have since died - more are gravely ill. The government has been directed to pay compensation to those affected and quickly, yet hundreds of people haven't received a penny. Jason Evans lost his father when he was four years old as a result of the infected blood scandal. He spearheaded a mission for truth and justice by setting up campaign group Factor 8 to demand a public inquiry and now he's fighting for the compensation agreed to be paid out. Joined with Des Collins, a formidable solicitor advocating for hundreds of victims, we delve into this shocking chapter of medical history and its ongoing implications. Hear their stories, the relentless hunt for damning documents, and the profound determination of victims fighting for their rights.

    Des Collins and Jason Evans share invaluable insights about the bureaucratic red tape that has delayed compensation and justice for those affected. We dive into the intricacies of the Robert Francis report from 2022, the Langstaff report's recommendations, and what these delays mean for those still awaiting compensation.

    Through their tales of persistence and resilience, Jason and Des will bring us face to face with the realities of trying to hold government officials accountable.

    Angela Walker: 0:08

    Thousands of British people died after they were given blood products by the NHS contaminated with Hepatitis C and AIDS in the 1970s and 80s. A public inquiry ended in February this year, so Brian Langstaff, the chair of the inquiry, recommended that compensation be paid, and quickly, as many of the survivors are seriously ill. Yet thousands of victims and their families have still received nothing. I'm journalist Angela Walker, and in this podcast I interview inspirational guests and discuss under-reported issues. Today I'm in conversation with Jason Evans, a leading campaigner in the campaign for justice for victims of the scandal and also solicited Des Collins, who's represented hundreds of victims and their families in a joint action against the British government. Thank you both for joining me. I really want to talk about the compensation scheme and how that's going, but I think for listeners it's really important to understand the background to the infected blood scandal, so I'll explain. There was a shortfall in the UK in the concentrate needed to treat hemophiliacs, and so blood products were imported from the US, where donors were being paid. Jason, thank you so much for joining me today.

    Jason Evans: 1:26

    Good to be here.

    Angela Walker: 1:27

    We've talked many times over the past few years and I know your dad was one of the recipients of infected blood. Would you mind sharing his story with us today?

    Jason Evans: 1:38

    Sure. So my dad was born with hemophilia, a genetic blood clotting disorder, and historically and to this day, the way in which that disorder is treated is to replace the missing protein, the factor 8 protein that characterizes hemophilia, or at least hemophilia A. There are a number of types of hemophilia and in the 70s and 80s, like virtually all hemophiliacs throughout the UK who were given treatment at that time, he was given a new treatment for hemophilia factor 8 concentrate. That product infected him with hepatitis C, hiv, hepatitis B as well, and this treatment, this factor 8 concentrate treatment, had replaced the previous treatment for hemophilia, cryoprecipitate. And cryoprecipitate was the easiest way. I always tell people to think of it as something like a regular blood transfusion, whereas these new factor 8 concentrates were a commercialized product and, unlike cryoprecipitate, where one unit came from one voluntary donor on the NHS, these factor 8 concentrates were made by mixing together tens of thousands of plasma donations from often paid donors, often overseas donors, prison donors, and sold for a profit. So the whole field of hemophilia treatment changed dramatically. My father died as a result of his infections when I was four years old in 1993 and he is one of the approximately 1,250 people who were infected with both HIV and hepatitis C, and we believe there are only somewhere in the region of 200 to 250 such infected persons still alive today.

    Angela Walker: 3:48

    At what point, Jason, did you decide to start up the campaign group factor 8?

    Jason Evans: 3:54

    It was in 2016 that factor 8 kind of began more officially. But the trigger for me was in March of 2015, when the Scottish enquiry the Pemrose enquiry reported and it concluded that little could or should have been done differently and for whatever reason, that statement and that moment triggered me into campaigning really to or at least I'm not sure I decided to begin campaigning on that day but it triggered me to begin looking into what happened. I really hadn't kind of fully decided what I was going to do at that point, but I kind of decided I was going to do something. I think I just didn't know quite what was going to be required at that moment. So that was really the trigger for me, and factor 8 as a non-profit organisation came about from a meeting that I had with two people who were themselves infected with hepatitis C and HIV. We'd met at a pub and during a discussion. It was really their idea, more than mine, to start this new organisation that would have one primary goal of trying to achieve a public enquiry and be involved in nothing else. Because I think something that really does epitomise this story and Andy Burnham said this in evidence to the enquiry is that for too many years. I think that the focus got wrapped up in the benefits schemes that some of those impacted can access people who themselves infected or bereaved partners, and I think the focus became so much on that that the attention to the true what had actually happened was less than it should have been And that was going to be the only focus of factor eight, and it was.

    Angela Walker: 6:04

    There's. I first met you in about 2016. We met a gentleman's house in Buckinghamshire and he'd been infected with hepatitis through. He was a hemophilia. He'd been given contaminated blood through the NHS And at that point a public inquiry hadn't even been granted. But you ended up leading the group action for a public inquiry, which was a huge undertaking, and how did that come about?

    Des Collins: 6:35

    It came about essentially because we got into contact with Jason Evans. Jason Evans was, and still is, as we hear, very, very pro public inquiry And we decided that that was probably, if this case was going to be pursued, that that was the right way to go about it. Any calls for public inquiries before time had been unsuccessful. So we took the view that somehow we had to approach it from a different point of view. The initial approach was to commence proceedings legal proceedings for one or two people, to try and get some publicity for it and try and get it back in the focus, back in the media, which was always going to be very difficult, because even when I first became involved in it, i took the view that this had all been done before. Nothing else could come out of this disaster. It was, it's very, very sad, but nothing else could be done. So in order to attract some sort of media interest, we thought something should be done by way of legal proceedings. Legal proceedings on behalf of 123 or four people is not going to cut it. So we took the view that if we could put together a sufficiently large group, that that might attract some media interest and attract the attention of the government. So that's what we did. We decided that we should not go ahead on the basis of one or two people, that we go ahead on the basis of a group. That group rose from 10 or 15 through to about 500 in about four months And to the extent that the first time we wrote to the government legal department saying who we were and why we were we're taking this action and what were their proposals to counter it or were they going to agree to it Well, they were hardly ever likely to agree to it. But once we we broached it with the government legal department, they said, well, you are not acting for enough people, and I think that first letter went off sometime, possibly in April 2017. Government League Department, too seriously, probably took two or three months or two or three weeks to reply. By the time, they'd replied that the cohort had gone up from, say, 15 through to 150. So we go back to them and say, well, actually it's not 15. It's I can't remember the fingers Well, those are the sort of indications we had. It's not 150. And so they take another two weeks to write back and then we say, well, no, actually it's 250 now And, putting it bluntly, they thought we were talking absolute rubbish and that we couldn't have acquired that many victims to be represented in that short space of time. But they haven't taken into account was the fact that these people had been out there waiting for something to happen for 20, 30, 40 years, and once they saw the slightest possibility of action, they were right behind it, and they have remained so to today.

    Angela Walker: 9:57

    And how did it feel when it started snowballing and escalating like that?

    Des Collins: 10:01

    very edifying in terms of you realize that this wasn't just, these weren't empty promises being made by potential victims. These were people who wanted to stand up and fight and who had not been given the opportunity to fight effectively at an earlier stage. Every time they had possibly got to a situation where they might move forward, something would happen. The government would say, well, effectively, here's, here's a bowl of nuts and a bag of rice. go where it bother us for a while. And that's what happened time and time again. And by this stage, back in the night 2016, the victims were not going to be bought off like that anymore. A lot of them were second generation, as is Jason, and they had seen the mistakes which had been made in the past and they were quite, quite determined that that wouldn't happen in the future.

    Angela Walker: 11:01

    Certainly, Jason. you did pursue this with a great vigor And I know you've got access to thousands of documents using freedom of information requests. How did you feel when these damning documents came to light, because I know some were destroyed. Others had information that appeared to show that it was known in the NHS that these products were contaminated and even after doctors knew that the blood products were infected, they continued to give them to people. How did you feel reading these documents?

    Jason Evans: 11:35

    It was a very gradual process and you know there had been allegations for decades that risks of infection were known. There had been arguments about what stage the level of risk of different viruses was known. But over time, through making trips to the National Archive, i'd become very interested on the reference numbers that were on the folders, the many folders of documents at the National Archive, and had fairly quickly noticed because you know they were sequentially numbered that there were gaps in some of those numbers And I began to make a very light what became an extremely large spreadsheet of the numbers of all the files. And then would make freedom of information requests to the Department of Health for the specific reference numbers of files which should be there, which weren't there. And so for a long time, at least 10 years, the Department of Health had had towed this line. They'd said it, multiple ministers had said this line to Parliament that all the documents were either in the public domain or they'd been destroyed. And actually, you know, for the media and for campaigners, i think to a degree that line was quite good because that in itself sounded quite scandalous that documents had been destroyed. But actually that was the lie. Not all of the documents were in the public domain or destroyed. They were in fact at least hundreds and I think now thousands of folders, and each folder contains hundreds of pages, which were buried at a third party storage company called Iron Mountain, which the Department of Health uses and many other government departments use to store documents. And so over a period, you know, i began to look at the documents in the National Archive and also facilitate, or begin to facilitate, the transfer of documents from Iron Mountain to the Department of Health, to the National Archives. Then I could get access to them. And you know, if you go forward a couple of years, with the help of Baroness Lynn Featherstone, who's been very helpful to the campaign over the years she has a family member who was infected as well We actually got the Department of Health to accept that not all the documents were in the public domain or destroyed and they agreed to never use that line again. So Iron Mountain began moving folders and documents to the Department of Health. The Department of Health sent them to the National Archive and I managed to start getting at more and more of these documents And so, in addition to, you know, learning more about the risk, about the lack of consent, about how neither the Blub Products Laboratory here or the Pharmaceutical Companies had heat treated their products before sending them into use, which they should have done. That would have heat treatment would have killed viruses. That was known going back to the 1940s. And so learning about all of this stuff, gathering more and more knowledge and aspects which hadn't been reported on before getting that out into the press, that was all one thing, but then another element was how the government had used this line that all the information was out there already or destroyed. They'd been using that line for such a long time and it just wasn't true. And what actually ended up happening during the course of the inquiry was that the permanent secretary who is still the permanent secretary to this day, chris Wormoldt at the Department of Health, wrote to two former ministers who had given that line to parliament Nicola Blackwood and Jane Allison and apologized to them for having provided them with incorrect information, which they subsequently provided to parliament many, many times, and he lists those times in the letters which are now publicly available. So that was all key, you know, as well as learning about the documents was exposing that lie that all the information was out there or destroyed.

    Angela Walker: 16:15

    And, as you kind of revealed more and more information, how did you feel about that?

    Jason Evans: 16:22

    I think 2017 and 2018 in particular were really kind of odd years for me when I look back at them now, because I was definitely, you know you caught up in the momentum of the campaign, the group legal action, you know, being accepted as being able to progress into the court and the media stories, and everything was moving very quickly. I mean, i guess in a way it still is now, but at the same time it was, you know, distressing to read in meticulous detail about everything that had gone wrong which would lead to the death of my father, and kind of understanding the true scale and the true I don't even know if I'd categorize them as failures you know the true kind of scandalous behavior that went on at so many levels that would lead to those events And it was distressing And it was, yeah, just a very strange time.

    Angela Walker: 17:29

    But I think being caught up in the campaign and kind of being, you know, near or at the forefront of it, kind of distracted from The distressing part of it in a way, Of course, because you were so busy digging deep and trying to uncover the truth that perhaps You didn't even have time to even absorb all this awful information that that was coming to you. This was the largest scale public inquiry ever held in the country. It was looking at how people were given contaminated blood by the NHS. It's also looked at what was known or should have been known and the extent that people were warned of the risks or not and The impact on those affected, and it looked at whether there were attempts to cover up what happened, which is what we've just been talking about there. It was a huge remit, des. Can you tell us where the inquiries at now?

    Des Collins: 18:26

    The inquiry has. Some people say the inquiry has concluded. It hasn't concluded. The inquire powered To all intents and purposes. The inquiry finished hearing evidence earlier this year. It then went into recess and the Approach was widely accepted that an interim report on compensation would be issued After about Easter, with a final report dealing not with compensation But all the issues of what happened, why it happened and why it shouldn't have happened, being made available to the public on production in the autumn of this year. That position has slightly altered because what has happened is that The inquiry stopped hearing evidence. We all went away to look at that evidence and await the reports of the chair. The chair produced what's known as an interim report In just before Easter and that interim report is in fact the final report on compensation. That final report on compensation, which was unfortunately called an interim report, but that's just what happened Whilst distributed. It was published and the intention of the inquiry as far as we can determine the chairs intention Was that the government would react fully and properly to that report and make sure that compensation, a compensation framework, was put in place pretty much immediately. That was just before Easter. We're now halfway through court with law towards the end of of July and, to all intents and purposes, no action has been taken with the view to implementation of the The recommendations in the report.

    Angela Walker: 20:16

    Let's hear from Sir Brian Langstaff, who he's chairing the inquiry. This is a clip recorded from the second interim report statement, which I believe you're referring to there, on the 5th of April this year, that's 2023.

    Sir Brian Langstaff: 20:31

    When hearings finished in Old Witch House in February, i told you that I would be making a further interim report about the framework for compensation before Easter. Today the inquiry has published that report. It's an unusual step to publish recommendations about redress in advance of detailed findings, but I could not in conscience Add to the decades-long delays many of you have already experienced Due to failures to recognize the depth of your losses. Those delays have themselves been harmful. As you know, the government has recognized that wrongs were done and that compensation should follow. I've made interim payments in October. I Believe that the government was right to accept this. My conclusion is That wrongs were done at individual, collective and systemic levels. I will set out the detail of what happened and why in my full report, but my judgment is that not only do the infections themselves and their consequences merit compensation, but so too Do the wrongs done by authority, whose response served to compound people suffering.

    Angela Walker: 22:02

    So we heard Sir Brian there saying he could not in any conscience add to the decades-long delays in compensation. And yet still so many people are waiting. How has the government justified this delay?

    Des Collins: 22:16

    The government sought to justify the delay on the Simple premise that it's a it's a long, complicated story and it's got to investigate it fully and determine how A compensation framework should be set up and in what form. That doesn't bear any close examination, because what the government doesn't readily accept although it knows that's the position that back in 2022, the government obtained a report from its own Consultant, sir Robert Francis. Now that Robert Francis report dealt with the question of compensation, compensation and it was intended to deal with compensation, according to the The government at the time, in order that when the when the inquiry fully reported on compensation, they were able, they would be able to react fully, properly and Appropriately to that. So that report has been with them since 2022, perhaps Surprisingly perhaps not surprisingly when, once that report came into that, they came into the possession in 2022, they didn't respond to it. They produced no response to it whatsoever. They then waited till until April when the first Langstaff report in compensation the interim report which we've just heard about came out, and what we find is that Sir Brian Langstaff, the chair of the inquiry, has pretty much adopted the findings or the conclusions reached by Robert Langstaff the year earlier. So the government's now been in possession of reports for quite long enough to be able to react fully, properly and appropriately. Everyone accepts it's a complicated exercise and requires careful thought, but it doesn't require careful thought to the extent that it's delayed indefinitely, particularly against a background where the chair has said it must be done immediately.

    Angela Walker: 24:13

    So let's clarify who's had compensation so far and how much have they had?

    Des Collins: 24:19

    The compensation so far has been to the bereaved, and that was the first interim report which came out back at the end of 2022.

    Jason Evans: 24:32

    That was for those infected still alive and bereaved partners. I think that one.

    Des Collins: 24:37

    That's right. That's right. The then government responded very quickly. That was a recommendation made by the inquiry back in July 22. The then government responded very, very quickly and the payments were made pursuant to those recommendations by October 22.

    Angela Walker: 24:58

    So who hasn't received? because there are an awful lot of people that haven't received compensation. Who are those people then, and why?

    Des Collins: 25:05

    Pretty much everyone else who might be entitled to compensation either under the Langstaff recommendations or the Robert Francis internal report, which is I can put it in simple terms The payments were led to believe under that first interim report in July last year, which payments were made in October about £400 million. No one is quite sure what the total payout will be in terms of further compensation payments being made, but that is probably going to be in terms of billions. So what's been paid at the moment is really a drop in the ocean, and what's more worrying is that there's no indication whatsoever as to when further payments will be made or if further payments will be made.

    Angela Walker: 25:58

    Well, i've been in touch with the Cabinet Office and they see this very brief statement today. It says this the government accepts the moral case for compensation and work is ongoing across the UK government and in consultation with the devolved administrations to consider as quickly as possible the recommendations put forward in the enquiries second interim report. So that's the statement that I've been sent and they've also referred me to the 22nd of June in the Commons when the Minister for the Cabinet Office and Paymaster General, jeremy Quinn, addressed the House of Commons and he said then he chairs a small ministerial group to bring together the expertise of different departments. He talks about the complexity of the issue. It does sound like they're doing something, jason. Are they doing enough?

    Jason Evans: 26:55

    Yeah, i mean that all sounds pretty good, but from what we've been able to get again through freedom of information on the area of what, if anything, is happening with compensation, it hasn't been very encouraging. So, as Des said, they've had Sir Robert Francis' compensation study since March last year And when we managed to get some documents to look at what work had because all last year they were saying work is ongoing to consider that And when we actually looked at what they've been doing, the answer unfortunately was not a lot. They'd set up quarterly meetings So they were meeting once every few months at best And even that appears to have only happened towards the end of the year And when I had sent FOIs to virtually every government department that might possibly be involved in the issue of compensation. So we're talking the Treasury, the Department of Health, many of the departments, cabinet Office I won't go through all of them now, but it was surprising because we were told there was a permanent secretary level group And now we've got a small ministerial group as well. We told there was a permanent secretary level group of different departments taking forward work. Strands was the wording that we heard in December last year And many of the departments came back on FOI and held no information at permanent secretary level about the issue at all. And that was information I presented to the All Party parliamentary group earlier in the year And I had bought the documents with me to show that. So it doesn't seem very encouraging And I always I think many of us in the community pay very close attention to the wording that comes back from government. So if you look at the wording there, they say they are working to consider And I don't know if working to consider something is the same as actually considering something. And also, you know, in the debate that took place in the Commons we heard that basically the government was unable to say anything because it's complex. But the whole point of the compensation framework study by Robert Francis, the point of to Ryan Langstaff's recommendations, was to deal And they have dealt with that complexity. It's been scrutinized in great deal through the inquiry. So there's a lot of excuses but I just I don't really see how any of it holds up And the wording isn't encouraging.

    Angela Walker: 29:42

    I want you know. We're talking about meetings and ministerial groups and processes and so on, but ultimately there's a group of people who have been seriously affected. They've those people that have died. There are the bereaved, there are people living with terrible illnesses And among those people, a lot of them, you know, waiting for a public inquiry. A lot of people died before the public inquiry even got started, and and and since, people are still dying. How are people feeling about this process just dragging on?

    Jason Evans: 30:22

    The distress is massive. I mean, on a daily basis I receive emails and phone calls and I'm sure Des and various members of his team do from people who are fed up, angry, upset, you know, just in a state. Basically because you know Sir Brian Langstaff himself in the interim report said time without redress causes further harm, and in fact the minister, jeremy Quinn, has also echoed that as well. So that's accepted by everybody, that the longer this takes, the more harm is done. And that is the truth. You know that that really there's no more to say than that wording. The more this goes on, the more harm is done, and there's some, really you know tragic stories out there And in particular you know, i think of you know, the parents whose children died of HIV, often at a very young age, and it's not just now. You know those infected who continue to die. It's also people in that position but because many of whom are quite elderly, have been waiting for justice or some form of justice, i should say, for such a long time, and now quite elderly and send me email saying you know, we're in our 80s now And we don't think we're going to kind of actually see any recognition of the life of our son or sons, and those are people that I particularly feel for because I fear they may well be right.

    Angela Walker: 31:56

    I think what we should talk about as well is the stigma, because I know there was a family who lost a son. He had, he developed HIV, he died from AIDS And they were receiving letters through the letterbox from people who were saying we don't want your sort living here this kind of thing because of the stigma. And there was another gentleman that I met at the inquiry And he told me that to this day his family don't know that he was infected with HIV because he couldn't bring himself to tell them. So it's about the recognition, isn't it, jason? It's not about the monetary compensation, although that is obviously important, because a lot of these people haven't been able to work.

    Jason Evans: 32:48

    Well, i think it's really important for people to understand that this compensation, if it ever happens, at least no one is being enriched by it And in fact, i doubt that the compensation will ever really truly cover the full extent of people's financial losses. No one's being enriched by it. This is, you know, an attempt to make up for the true financial losses that people and other losses that people have actually suffered. People lost their homes, they couldn't get life insurance, they were unable to have the education that they would have had, and there's so many other things. You know the list of losses that I have heard from people infected, people affected and you know there's obviously know a lot more about the legal specifics of this than me, but just hearing the basic things people have lost because of what happened, it is almost endless And I think the minimum that can should be done, given that this was preventable and shouldn't have happened which the government themselves, you know, say that's their line. They like to say the infected blood scandal should never have happened. The least that should be done is an attempt to give back some of what was taken away from people, and I think it's really important for people to understand that And there are so many elements, and stigma is a massive one as well. It took away you know people's basic. You know right to you know things like a private, a private life to not you know have it known. You know what their medical conditions were And it was you know, thrown all about the community to. Just the right to have a relatively normal life was taken away from people And a big part of the reason was the stigma.

    Angela Walker: 34:41

    So, Des, what happens from a legal point of view now? We've had the interim report around about Easter. It seems that we're waiting for some development to do with the compensation scheme. Where are we at? What's happening next?

    Des Collins: 34:57

    What will happen next is that the enquiries already decided that government witnesses should be recalled towards the end of July, effectively to explain precisely why there has been a delay in implementation of the report which came out in April. We'll have to see what that brings. Meanwhile, the final report, which deals of the inquiry, which will deal with address issues of what went wrong, why it went wrong and how it might have been avoided, will come out at some time in the autumn. Meanwhile, the group action which was started in 2017, has been put on ice. It was put on ice in 2017, essentially because you couldn't have a high court judge looking at the same issues as a chair to a public inquiry and possibly just possibly reaching different conclusions, so that the group action will be restored, if necessary, once the when I say restored, it will be brought back before the court. It's in a vacuum or on ice, as I say, it will be brought back before the court at the end of this year, if and as far as necessary. The word on the street from the government legal department is well, you're being far too premature on this, because wait to see what the compensation framework is going to produce, and what we're saying is, we have been waiting and we've got victims who've been waiting for 40 years and nothing's been produced so far. Even over the past three months, nothing's been produced. So we will press as quickly, as hard as we can, as effectively as we can, to bring that action back before the court. Because if the compensation framework is not to pay out anything to the victims, then there only their last refuge, as it will be the group action, and we intend to make sure that they're entitled to the recovery in its fullest sense from that action as fast as possible.

    Angela Walker: 36:57

    Jason, when I spoke to you in February, i think the hearings of the inquiry were just finishing and there was a sense that you know it was the beginning of the end. But even then you had your doubts that it was going to kind of wind up swiftly. What are your feelings towards the government now? What's your message right now to the government?

    Jason Evans: 37:20

    Cut through the bureaucracy and do the right thing. I think there's a weird sense of history repeating itself because through looking and anyone that has followed the inquiry closely will know that when you look at the documents and you see all of the bureaucracy of what happened in the 70s and 80s that contributed to the decisions that led to the infections, to the deaths, that same bureaucracy is, from what I've seen at least, going on now, where you've got layers of civil servants talking to civil servants, having a nice chat about we could do this on one hand, this on the other hand, this, and it just takes ages to actually get something to happen. And I do think it takes a bold minister with confidence and courage to actually get the civil servants to do what they want them to do and to do the right thing. And I think we did see an example of that with when Penny Mordent was paymaster general and she wrote to Rishi Sunak saying it's inevitable, compensation will have to be paid and she went on to set up the compensation framework study that we've been campaigning for, and so she's an example, i think, of a minister that did make things happen. I've always took the approach of not playing into the party political element of it. This is a scandal that's gone on through governments of all colours, so I think that's what's needed and I think it is stuck in that system again and it needs someone to drive it forward now.

    Angela Walker: 39:03

    Do you think people have lost sight that it's people's lives that we're talking about here?

    Jason Evans: 39:10

    I mean it inevitably ends up people's lives do end up being the numbers. You see that historically, and I'm sure it's the case now, that the cold hard calculations of quality of life, adjusted years and all that sort of thing that goes on. And yeah, i'm sure those calculations are being made about how many people are going to die between this date and that date and how many estates are there and how many infected people might progress to cirrhosis and how much is that going to. I'm sure all those calculations, if they haven't already, will be done and will be taken into account And I think it would help the government a lot more to speak to a broader range or to have spoken to a broader range directly of people infected and affected. What we don't need now is any more consultation. In my view, we've gone through several rounds of intense consultation over the last couple of years to get to the point of the inquiry recommendations. But I have over the years witnessed whether it's a reluctance of the ministers or the blocking by the officials of the messages getting to the ministers There is a resistance to meeting directly with people. I know that the current Paymaster, jeremy Quinn, has met once with some campaigners, but I mean, for instance, michael Ellis, the previous Paymaster General, and just to clarify, it's the Paymaster General, the Cabinet Minister, who has responsibility for our area, our inquiry in this compensation area. Michael Ellis never had such a meeting. I don't think there was a minister before him. I think Edward Arga. He was only there for a month or two. He was only there for a month or two. He never met with anybody. The current Department of Health ministers, i don't think they've met with anybody. And so you can see how, for the ministers, the ones that have never met anyone infected or affected or at least if they have, it's maybe a constituent, it's not a broad range of people You can see how they would just look at this as numbers.

    Angela Walker: 41:35

    You want to meet with them. Jason, do you want to stand there and say what are you doing? Speed things up. People are dying. People have died.

    Jason Evans: 41:46

    Yeah, I mean we regularly try to reach out and set up meetings with various ministers And, by and large, they don't happen. We did manage to obtain a meeting with the Shadow Paymaster General, which happened earlier this year, But obviously it's always going to be easier to get meetings with those in opposition Because they don't have and I think this brings it back the same level of officials that are going to get in the way. And so, yeah, I mean we would like to meet with government ministers and we try to, And, by and large, we are unsuccessful.

    Angela Walker: 42:26

    Jason Evans, thank you for joining us. Des Collins, thank you so much. Thank you, thank you. You've been listening to Angela Walker in Conversation. I hope you've enjoyed the show And for more information, check out my website, AngelaWalkerReportscom, where you'll find information about other podcasts in the series And you can see more of my work. And if you know someone who's inspirational or if there's a story you think is underreported, then drop me a line through my website. I look forward to hearing from you. Until next time, take care.

    #HIVHepatitisScandal #InfectedBloodControversy #NHSCompensation #Factor8Campaign #PublicInquiryDemand #MedicalHistory #CompensationDelays #RobertFrancisReport #LangstaffReport #GovernmentAccountability #VictimsRights #BureaucraticRedTape #JusticeForAll #MedicalInjustice #HealthcareScandal #VictimAdvocacy #TruthAndJustice #CompensationStruggle #GovernmentResponsibility

  • 3rd July 2023

    Get ready to be captivated by the miraculous story of Bharti Dhir, a woman abandoned as a newborn baby in Uganda, who overcame unimaginable hardships in her life. We sit down with Bharti as she shares the life-changing moment when she was discovered and adopted by a local Punjabi Sikh family, and how her mother's prophetic dreams of a baby girl played a role in this incredible tale.

    Bharti's journey was far from easy, as she faced many challenges growing up with a dual heritage and a rare skin condition called Epidermolysis Bullosa (EB). In our conversation, Bharti reveals the various unconventional treatments her father sought to cure her condition, and how her family's unwavering love and support led her towards self-acceptance and healing. Hear the emotional details of her childhood battle with EB and her path to embracing her unique identity.

    Bharti recounts the harrowing experiences she and her family faced while living under the brutal regime of Idi Amin in Uganda. Through tales of danger, escape, and the strength of her family's love, Barty's incredible resilience and positivity will leave you in awe. Don't miss this powerful episode, and be sure to pick up Barty's memoir, 'Worth', to learn even more about her remarkable life story.

    Angela Walker: 0:07

    My guest today is a true survivor in every sense of the word. She was abandoned as a newborn baby and left at the side of the road in Uganda. She was rescued by a passer by and then she was adopted by a local family, but she then later had to flee the regime of a brutal military dictator and she's battled against a debilitating illness her whole life. I'm journalist Angela Walker, and this is my podcast, where I talk to inspirational people about under reported issues. Today I'm in conversation with Bharti Dhir. This is her incredible story. Barty, thank you so much for joining me. You are a survivor. You've been through so much and you've kind of come out the other end with a smile on your face. You're just so upbeat. Can we go back to the beginning? Can you tell us what happened when you were there? you were left at the side of the road in Uganda. Talk us through that.

    Bharti Dhir: 1:13

    So this happened in 1960 and I was found on a roadside in Kabali in Uganda. I was around two to three days old They're not sure of my exact date of birth but prior to that, my parents, who subsequently adopted me, my mum, had actually had dreams that she was having a baby girl, and she was pregnant at the time, and my father was convinced it was just that she was carrying a girl. but she kept saying no, i've had this dream and although they are Sikh, my mum was also very influenced by Hinduism and she kept saying that the goddess Lakshmi had come to her in a dream and said that she was going to have another little girl. So when I was found, the local newspaper reported that they thought was an Asian baby had been found on the roadside, and my mum managed to persuade my dad to take her to the local hospital and that's where they found me and that's where she found me. So that's literally what happened, and I don't know if you know much about Uganda, but it was even a miracle that I was found, because in Uganda, when you are going along the roadside, you see boxes on the side of the road and generally drivers will stop to see if it's fruit or vegetables, and you sort of they took their horn and then the farmer comes out and he or she may sell you the fruit and vegetables. So there was just one, this one lone box and one lone driver, and he stopped thinking, oh, let's see what's in this box. there's a final box left, and actually found me instead.

    Angela Walker: 3:13

    So yeah, So he looks inside this box, there's this tiny baby. I mean, it's Uganda, the chances are was probably extremely hot. Yes, and he opens it up and there's a tiny baby. Did he ever talk about that experience, of what made him stop, how he came across this baby?

    Bharti Dhir: 3:36

    I've only got one faded piece of paper where it's the interview he gave to the police. So it's actually a police inspector saying that Mr I think his name is Mr Mateo has come and he found this baby and he's bought the baby to us and went busy. We're trying to find the parents, but that's all I've got. I don't know anything else about the circumstances and I've never met the gentleman either.

    Angela Walker: 4:11

    So And there's your mum. She's heavily pregnant. She's telling your dad, i'm having this dream, i'm gonna have this baby, and tell us expand on that a bit, because it was really vivid that this was kind of vision that she kept having, wasn't it? Yeah, she kept.

    Bharti Dhir: 4:31

    So she told me this story many years later, but she said that she kept saying to my father that there is another baby and she's wrapped up in a pink blanket and she's in Ward 21. So that's really embedded in my mind. And she's in Ward 21 in Kaseyzy Hospital and my father kept saying no, that's, it's just your imagination, it's because you're pregnant, you're having a baby. My father was not as spiritual as my mom. He believed in God, but he just wasn't. He, you know, he just wasn't that spiritual. And when I was found and there was a newspaper, my mom was illiterate, she couldn't read or write. But she saw a picture of me and she goes that's the baby I've seen, that's the baby I've seen. She finally managed to persuade my dad to take her to the hospital and the story is that when they got to the reception, my father I think very, probably very sheepishly is trying to say you know my mom, my wife, says there's a baby here and my mom had already gone because she'd seen the corridor in Hadree and she already seen the ward, ward 21, and when my father actually followed her, she'd already picked me up from the cot and there I was, wrapped in a pink blanket and she said this is the baby I've been telling you. She is our daughter and we're taking her home. Obviously there was some paperwork and there was process to be followed, and I did go to my family on a fostering basis. They found out that I was allergic to cow's milk this is this 1960s I'm not sure if there was powdered milk then in Uganda and so they needed a mother who could actually give me some of her milk. So my mom was able to express her milk for me and so, because she was pregnant as you know, she was heavily pregnant, so yeah, so initially I went there on a fostering basis and then I was adopted six, seven months later and, of course, you were an African Asian child taken in by a Punjabi Sikh family.

    Angela Walker: 6:52

    In itself, that was quite a unique situation, wasn't it?

    Bharti Dhir: 6:56

    It was, yes, adoption, particularly in the Indian community at that time, and potentially even maybe African family. You tended to adopt children that you knew. If you were infertile or you couldn't have a child, maybe your sister might offer you her child or a brother might offer you a child. But to actually adopt a stranger, and particularly a stranger who was not your race, was very unusual in those days. And my parents went through a lot when they wanted to adopt me because, you know, they were told it's a girl, why do you want to adopt a girl? so there was a lot of sexism around that, you know, and there was a lot of prejudice around illegitimacy. You know, my parents were told she's going to bring dishonor on your family. She's going to bring dishonor on our family. We're not going to be able to marry our children off because she's going to do what her birth mother did, which was having an illegitimate baby herself, which was considered to be very dishonorable. Then they were told, when they found out, that was actually dual heritage I was part African, part Asian. In the eyes of the community, i was actually African, as far as they saw it, and they were told why you? why you're adopting somebody who's so dark, she's so ugly, nobody's going to want to marry her. And then there was the sexism again about why don't you, if you wish to adopt, adopt a boy, because a boy is not going to be as burdensome as a girl. So they, they. My parents went through a lot to adopt me and to stick to their guns because they went against society and society and the pressures from that society and the prejudices of that society regarding adoption. So I do admire them very much for that and they didn't tell you you were adopted. They know I? in fact I didn't know. And it's really strange because when I was in primary school, children used to come up to me and say you know, that's not your real family. And I used to get into loads of fights physical fights because I used to say, no, that is my real family, and my sister used to join me saying, yeah, she's my real sister. I think when you're a child, you don't see colour, And my parents used to play this game where my dad used to say Barthi looks like me, And my mum used to say pull Anju, my sister, over to her and say well, Anju looks like me. And you know, it's just a sort of bantering game as to. So you know, as a child you don't see anything different. You don't see that. You just see, oh, I look like my dad And Anju looks like my mum. You know Mina looks like mum. You know My brother looks like my mum, And so you just don't see it. In terms of colour, It never occurred to me that my hair was curlier, shorter, that I was darker skinned. I just took it as everything at face value. So when I found out I was adopted, it was actually quite a shock, because I was eight years old, round about that time, And I went into my father's study because I was an avid reader and I was desperately looking for things to read And he had quite a few books in his study And I came across a file with my name on it And that's so. Picked it up after curiosity And so these pieces of paper saying adoption. And so then I looked it up in the dictionary and realised actually I was adopted. But of course I couldn't talk to my parents because if I'd said I'd been in the study, I was more worried about getting into trouble for going into the study than actually you know the actual news that I was adopted. So I told my sister but I didn't talk about it.

    Angela Walker: 11:13

    And you didn't talk about it for years, did you And that's quite a secret for a child to kind of keep inside And to did it bother you, did it upset you.

    Bharti Dhir: 11:24

    It didn't upset me, i think, because I you know. But I think it just made me more curious as to why I wasn't told It didn't upset me. Of course I started to see things with sort of fresh eyes after that. So whenever they played the game of Barty looks like me in my heart, i would say, well, actually I don't. I started to notice the difference straight away And I just kept quiet. When children came in and I was like when children came up to me and said, oh, you're adopted, i just kept quiet And sorry, they didn't say I was adopted. They said that's not your real family. I didn't go into fights anymore, i just kept quiet. But I didn't actually tell anybody until when I was around 16 years old And it was here in the UK And I'd gone to a hospital the hospital for an appointment And at that appointment they found out that I had a condition called systemic lupus erythematasis, so lupus for short And the doctor, the consultant, was asking my mom, you know, is this? is there anybody in the family that has this? So my mom said, oh, ask Barty to go out the room and I'll tell you. And at that point I sort of blurted out I'm adopted. No one knows anything about me. I was abandoned on the roadside, so yeah, so that's when my mom actually knew, found out that I've known all along I was adopted.

    Angela Walker: 13:00

    And I bet that was quite a shock for her, i think yes, her face looked a picture. So you mentioned earlier that you were an avid reader and I know that your dad really encouraged you forward with your education And talk to me about that.

    Bharti Dhir: 13:17

    Well, my father was very adamant that we should all be educated, and you know, and, but I think, looking back on it now, education at that time for girls yes, some girls went on to have a career, but most of the time it was to get a good marriage partner. So the more educated you were, the more likely you were to get a good marriage prospect out of it. So My father did encourage us to study and he did encourage us to have aspirations. That was more unusual. Most of the time the majority of Asian girls it was all about getting a potentially good match in marriage eventually, and some girls did go on to have a career, but generally it was more about marriage prospects.

    Angela Walker: 14:19

    And I know it's when you were a child that you suddenly developed a really serious health condition. It was a skin complaint. Talk us through that, because I know that affected you throughout your whole life And it started when you were a child. Yes, so I was again round about the age of seven or eight.

    Bharti Dhir: 14:35

    Yes, so I was again round about the age of seven or eight years old And I developed this condition called epidermisus balosa And it's actually known as EB for short, so they have a nickname for it here and it's a butterfly skin. It's basically, your skin is very, very fragile, becomes very fragile and actually developed blisters all over my, all over my body, and it's quite a painful condition. I don't know much about it because in the 1960s they said there was only three or four people in the world that they knew who had it, so there wasn't much known about it. It was a very, very rare skin condition And so I developed these blisters all over my skin and of course you know, with it comes that sort of awareness that not only are you ill but people do shun you because people are worried that it was contagious, didn't know what it was. So there was a marked shift in the way the other children at school started to see me. From playing with me I would be more rejected and I started to go more inward into myself and getting more withdrawn. So I think it really affected my self worth having such a visible skin condition and knowing that I was. There was just absolutely no one else around who had, who had, who had this condition. I've still got it. It's incurable. However, i have to say that I've not had a blister on my skin for at least 20 years now.

    Angela Walker: 16:26

    You were covered in these terrible blisters and your dad, as I understand, he was determined to help you and to try and find a cure And he took you all over Uganda to try and get to the bottom of it and to try and help you. Tell us about some of the treatments that you had, because some of them were really invasive, weren't they?

    Bharti Dhir: 16:49

    Yeah, so you know, my father really did try very, very hard I mean I was on steroids, on Freddie's Lone at the time, but he was determined that there was going to be a cure. So my mum went more the spiritual side and she was more into taking me to priests and imams and, you know, getting prayers done and rituals done. But my father, he took, you know, my father took me all over. I mean, there was one particular one which is quite traumatic, i think, and that was this man who put me, this doctor, put me in a sauna And I can't really describe the contraption. I don't know what you'd call it in English, but you're sort of ensconced in this little kind of box thing. And he was actually a sauna and you got in there And then this the idea was that the steam would draw out the toxins from my body. But of course when you have EB, the heat from the sauna and the steam, it just felt like it was an iron burning me all over. So I just remember really screaming and screaming and just wishing that I was, didn't have the resilience and I could pass out. Yeah, it's so traumatic.

    Angela Walker: 18:14

    I mean so painful, especially for a child you know Yeah. And your dad. He even took you to see witch doctors didn't he?

    Bharti Dhir: 18:23

    He did, he took me to a witch doctor. Yes, he took me to a witch doctor. That was another traumatic That was. It was simple enough, you know, that they were going to give me some water to drink, but when the witch doctor sort of spat his mucus into that water and told me it was a cure and I had to drink it in one go, i just couldn't do it. I just could not do it. And I remember I don't know what's more traumatic actually the guy on the hill with the sauna or the witch doctor expecting me to drink his mucus and telling me that it was a cure and he'd done a special prayer and what did your dad say when this witch doctor said she must drink this solution?

    Angela Walker: 19:09

    What was your dad's reaction?

    Bharti Dhir: 19:10

    Well, he did try to persuade me to drink it And I was actually quite surprised because my father was very educated And, as I said before, he wasn't into spiritual things. He was not even superstitious. And for him to take me to a witch doctor actually showed the level of desperation he must have been feeling. He'd been told by some locals that you know, this guy was a miracle worker and could cure anything. So I think he was desperately trying anything but anything. And I remember thinking but you're so intelligent and you're so educated in expecting me to drink this muck, and he did try to persuade me But actually, funny enough, i didn't get into trouble for it. I thought I'd get into trouble on the way back because I refused to drink it and actually threw the glass away, but he didn't say anything. And, funny enough, i heard him, i overheard him say to my mom I don't think I could have drunk it, but I don't think I was meant to hear that. I don't think I was meant to hear that.

    Angela Walker: 20:16

    The skin complaint itself. So what was the extent of these sort of blisters and lesions that you got, and was there anything that kind of brought them on, or did they just like appear, or They just appeared.

    Bharti Dhir: 20:28

    I mean, i was told at that time, i was told by the doctor that I may be allergic to the sun, which is a bit ironic when you've got dark skin. So I just remember being told to keep out the sun and various treatments being offered, such as, you know, drink lots of glucose, lots of water with glucose, because glucose is cooling on the inside. Don't eat this food, don't eat that food. Don't eat mangoes Mangoes were my favourite. Don't eat mangoes because they produce heat inside your body. They're not cooling, so the heat inside your body is actually encouraging the blisters to appear. So, yeah, there were all sorts of advice and guidance being given by different doctors and different people, different priests, but, yeah, the skin was very fragile. I only had to knock it and it would just peel off immediately. And I remember on many occasions just maybe falling over and the whole of my skin just coming off, and having to go to my dad And he'd been the middle of a meeting in the office and I'd appear with the skin and he'd just take out the first aid box and just deftly and very gently dress it and he knew how to, you know, put the gauze on it and then put the bandage on it. So, yeah, it was quite a traumatic illness to go through.

    Angela Walker: 21:56

    And your dad was obviously determined to try and help you and you talked very fondly of him, but I know that there was a time where he was quite a strict man, wasn't he?

    Bharti Dhir: 22:06

    Yes, yes. So yeah, I mean I think if you read that part in my book it's actually quite traumatic. He thought I had there was an incident this is before I had the Epidemi So what actually happened was there was an incident where he thought I was flirting with the Gardner and he didn't like it. I was actually playing hide and seek and the Gardner sort of was laughing and he pointed to a certain spot and said, oh, hide there. My father saw this interaction, thought I was flirting and really beat me up. I was given a good beating with sort of like a I don't know what you'd call it, like a cudgel, you know, or a club, and that was very, very traumatic. But to be honest with you, in terms of where we lived then and the era in which we lived, it was not unusual for parents to beat their children. I mean, you know it was not unusual this sounds horrible, but it was not unusual to go into school and children would come in with maybe a broken finger or a broken toe or and say, oh, you know, with marks, you know sort of belt marks over them, and and they'd say, well, i got beaten by my dad and with the boys it was almost a competition to show who'd had the worst beating on a Monday. They would show each other their bruises or their marks and say, well, i got really beaten. And somebody else would say, oh, i got even beaten worse than you. Look at me, you know. So yeah, we grew up in Uganda at that time with messages of. It was very normal to hear parents say, i bought you into this world, i can take you out. Or, you know, to hear messages in terms of girls if you do something that I disapprove of, i will kill you, you know. And so in retrospect it looks It's horrible, but when you're in the midst of it it almost becomes a normal part of your practice in your life. So you don't understand that the messages you're getting are actually traumatic to your psyche and to your soul.

    Angela Walker: 24:42

    Because it's off that time, it's of that era.

    Bharti Dhir: 24:45

    Absolutely.

    Angela Walker: 24:46

    And you know it's cultural. I guess it's endemic.

    Bharti Dhir: 24:50

    Yes, yes, it was, And so people, we all took it as the norm. Nobody actually came away thinking I'm so traumatized by this. There was that level of fear you had of your parents.

    Angela Walker: 25:04

    But I guess it was the same for all your peers.

    Bharti Dhir: 25:06

    Yes.

    Angela Walker: 25:06

    So you're accepting it as your normality at that time.

    Bharti Dhir: 25:09

    Absolutely absolutely.

    Angela Walker: 25:11

    And so talking about you know sort of brutality and so on, that kind of brings me on to Idi Amin and his regime, because this military dictator, he kind of rose up At that time you were a child, your family's Asian, and he really was cracking down on Asian families and especially Asian businessmen. Tell us about your experience of that Well living in Kabbalah.

    Bharti Dhir: 25:50

    It was quite a small town in the south west of Uganda, And when Idi Amin first came into power, there was a lot of rejoicing. A lot of people saw it as a new era and people welcomed him. And I vividly remember our school getting dressed up. We all had to dress in our best uniform and we were told to go to the stadium and all the schools were there in their uniforms And we sang to him and there were soldiers there and there was a lot of cheering, a lot of clapping. But soon after things started to, you know, rumours started surfacing of people disappearing. And then my father, who was alive at the time, would say to my mum you know, we need to get out this country, We do need to leave. And there were these little whispered conversations about where do we go, Which country do we go to? So then, unfortunately, my father passed away And at that time and then we had the announcement that Idi Amin had given Asians 90 days to leave.

    Angela Walker: 27:15

    But going back a little bit, if we can. so your dad was a successful mechanic, wasn't he? Yeah, He had his own garage, he had his own business.

    Bharti Dhir: 27:23

    Yeah.

    Angela Walker: 27:24

    So these are the type of people that were being targeted by the regime, weren't?

    Bharti Dhir: 27:28

    they.

    Angela Walker: 27:28

    Because they felt like, you know, these Asian businessmen were taking all the wealth out of Uganda.

    Bharti Dhir: 27:35

    Absolutely.

    Angela Walker: 27:36

    And there was this sort of racism. Talk to me about your dad's business and that experience.

    Bharti Dhir: 27:45

    Well, you know my father. When he went to Uganda as a young man, he was in his early 20s And he was dispatched to Uganda to find my great grandfather because my great grandfather was in Uganda, he'd done something illegal in India, or so he thought and had escaped to Uganda. My father did find him, but my grandfather refused to leave, said he loved it too much in Uganda, and actually my father also fell in love with Uganda, so he decided that he wanted to make this country his own home as well, and he started off as a servant, working in people's homes, and in that time he also learned to read and he started fixing people's cars in the street. So from that he managed to raise enough money to then move to Kabbalah and bought my mum over. They'd spent many years apart in their married life And by the time we came along he had a thriving garage and a business of his own.

    Angela Walker: 29:08

    So he built up his business, and when Idi Amin was in power, he actually used your father's business, didn't he?

    Bharti Dhir: 29:17

    He did. And actually we weren't fortunate in the sense that the soldiers came and used my father's garage to have their cars repaired. But on the other hand, it was fortunate in another way, because when Idi Amin's soldiers came into Kabbalah they issued an edict that everybody had to carry an ID card And if you didn't have an ID card then they would shoot you. And actually having that garage saved my brother's life, because he went out one day, with all the bravado that teenagers have, and he decided he was going to go out with his friend without an ID, got challenged by a soldier And luckily that soldier asked him who's son are you? And he said Katarachan Veer. And the guy said, oh, the gentleman where we go and have our cars repaired. And he said you're lucky, i know your father, otherwise you'd be dead now and let my brother and his friend go and they had to come, go back to their homes straight away. So we were lucky in that way. I mean, obviously the unfortunate part of having so many soldiers milling around in the garage was that for us girls it meant we had to stay in the house because they did take girls away. They carried them away and they took them away to be raped, killed or forcibly married, and so we had to stay in hiding when they were around. Our house was right next to the garage of Aranda, actually had a door that led straight into the garage, so we weren't allowed to go out at all.

    Angela Walker: 31:15

    They're moving forward. Your father passed away and your mother was determined I have to get my family out of Uganda. She sounds like quite an incredible woman. Actually, she was quite a determined lady. Wasn't she Tell me about how she managed to get you out? because at that time, people who were trying to flee from Uganda, they were being killed, weren't they?

    Bharti Dhir: 31:43

    So in Kibali, all the cars had been confiscated by the soldiers. Idi Amin thought that there would have been invasion from either Rwanda or Congo, And so he insisted that any those borders were closed, And he was also worried about people from Kibali going into Rwanda or Congo. So every single person had their cars confiscated. So you're talking about a region of around 45 families living in Kibali And I think, because we weren't in the capital, there were many rumors, and one of the rumors was that we've got 45 days to leave Uganda. So during that period we were told by one guy who was a taxi driver. He said he would be ferrying the families out to Kampala, which is a five, six-hour drive away, But it took longer because there were roadblocks. So he told us to be ready at any given time, And whether we were sleeping, whether we were eating, he didn't care. We had to be ready when he turned up and we just had to put our stuff in the car and we had to leave. So that actually happened. So Mr M, as I call him, he turned up and we all got in the car and got ready to go to Kampala And at the first roadblock we got stopped by soldiers And again it was quite a traumatic time, harrowing time. We'd seen somebody, we'd seen a child actually get shot in the car in front of us. And then it was our turn and they rifled through our belongings And they found about three cents, which are the equivalent of pennies in my brother's suitcase. And they said if they'd found one more cent they would shoot him. And we knew they meant it, But luckily they didn't find it. And then they actually turned around to my mum and ordered her to leave me behind, because they said that I was one of them. And my mum very bravely, very courageously refused. She did it in a very deferential way, but enough to say I'm not leaving her behind, She's my daughter. And three or four times the soldiers insisted Well, the main soldier insisted that she had to leave me behind And he was pointing the gun at her And the final time he actually cocked his trigger ready to shoot, And she said no, I'm not leaving her behind. And so I just want to illustrate that as a point, the immense courage and spirit that my mum had during that period to actually say I am prepared to die for my child here, I'm prepared to put my whole family at risk It's actually. It still leaves me speechless, You know.

    Angela Walker: 34:58

    There's your mum at gunpoint, being threatened with death. If only she would just to leave you there, she could be spared. But she stood there in defiance of the soldiers. And your book, your Memoir, is Called Worth. And when I read that passage about your mum standing there saying, no, i'm not leaving my daughter behind, you knew you were adopted, you'd been through so much. And your mum there could be nothing more powerful really than her saying this is my girl, i'm not leaving her. How did you feel when she was doing that?

    Bharti Dhir: 35:40

    Well, i think in the book I've sort of said, you know that it's indescribable, that feeling, isn't it? That feeling of worth, that feeling of being so loved by somebody that they're actually prepared to die for you? It's an indescribable feeling. It's gratitude, it's oh, it's disbelief All rolled into one. That You know, and I think it just. I've never felt more loved Than I did in that moment. But of course I was frightened, from my mom as well. I was frightened for my sisters and my brothers, that we would all get killed.

    Angela Walker: 36:26

    Well, you'd just seen a child Killed, and that was a boy with disabilities, wasn't?

    Bharti Dhir: 36:32

    it.

    Angela Walker: 36:32

    That's why the soldiers had targeted that family.

    Bharti Dhir: 36:35

    Yeah.

    Angela Walker: 36:37

    And I think you said in the book that the father Who did make it to the UK, he had a nervous breakdown afterwards.

    Bharti Dhir: 36:45

    That was the rumor We heard that that family although they made it Because they had to be incredibly strong, i mean, you know the soldiers sort of said What good is he where you're going through the wheelchair down? and then shot the boy and had to force and then Turned to the mother and said I did good, didn't I, mama? I did good. And The father had to say to her Tell them that they've done good, otherwise we're all going to get killed. Because there were several other children there as well. And She was forced to say yes, you did good, and hide that grief, that that trauma there. And then, and so I think he held it together and I hear, well, there was a rumor that when he actually got to England he just had a nervous breakdown.

    Angela Walker: 37:39

    I'm not surprised. I mean basically being told to thank the soldier who's? just shot your child dead. Yeah, keeping all that in sight, and that's just yeah, it's just horrific.

    Bharti Dhir: 37:50

    And then when he turned to me and he said to my mum, what good is she going to be where you're going? It was the same words He'd said about the disabled boy. And So that was very traumatic, i think, for all of us, and especially, you know, for me, because I thought this is it, i'm going to die now. And then he said leave her behind. To my mum. And now I sometimes wondered was that a test? if My mom had said You know, yes, i'll leave her behind, would you have then shot her and said see, you don't consider us Africans as one of you anyway? So you know, whatever it was, my mom's spirituality and her faith Told her that nothing was going to happen to us or to her. But you know, at the end of the day, we escaped with our lives and you did escape to the UK.

    Angela Walker: 38:45

    But before you got to the UK, before you even got on that plane, there was more trauma, more testing to to go through and Read me a passage from your book, because you really encapsulate that moment Where you're basically in, hiding from the soldiers, waiting for the opportunity to get to the airport.

    Bharti Dhir: 39:12

    Okay. So, to set it in context, we ended up going to my Auntie and uncle's house in Kampala when we got to the capital, and then, literally a day or so later, my cousin who I call puppy because that means sister-in-law my cousin's wife is Babiji came With her children, her four children. So this just encapsulates the kind of thing that we had to do. We were joined at the house a day or so later by Prithan Paji, dad's nephew, who lived in Kabali, and Bobby G, his wife. That originally planned to leave for the airport the day before us, but he changed his departure date to leave after us so he could be sure we'd left safely. He said he owed it to his uncle, my dad, to ensure we were safe. I Recall Babiji being a very strict but loving second mom to us all. She had four children who came to call me auntie. At that time, though, we simply wondered if we'd survived long enough even to reach the airport. Mom and Prithan Paji went to Kampala to fetch the papers we'd need for our departure, leaving us with Babiji for a couple of days. During the day we could play freely, but with firm orders to stay in front of the house and not wander off. But just before sunset we'd scuttled back inside. It was important to show that the house was unoccupied. So every evening one of my cousin's children or my brother will climb out of a window, lock the front door from the outside and then climb back in through the window. A Chain and heavy padlock on the front door gave a sure out wide sign that the house was empty, hopefully keeping the soldiers away. During our evening meal we were given instructions to remain completely silent if there was a knock on the door. We want to make a sound, not even a cough. All lights needed to be off and we were to lie on top of our beds in complete darkness. If soldiers started to break down the door, we were all to climb into the water tank in the bathroom. Again, we weren't to make a sound, no matter how cold the water. We were worried that we'd drown, but Babaji reassured us that the water wasn't that deep. She said she'd knocked three times on the tank when it was safe to come out. We had no idea how long it would be before we could venture out or what would happen if her knocks didn't come. As children we just accepted it.

    Angela Walker: 42:06

    Gosh, what a thing to live through. You've been through so much, barty, but you're such an upbeat person. How do you think it is that you've stayed so positive throughout your life?

    Bharti Dhir: 42:20

    I think initially I would say that I wasn't always positive. There were events that occurred that really did, i think, affect myself worth quite a bit. That was the illnesses, the lupus, and then the EB And being bullied at school for it, and then, of course, the whole trauma I think of you know finding I was adopted and You know having to keep that a secret. So I think you know. And then you know the prejudice from the community itself regarding my upbringing, my adoption. You know who I was a part African, part Asian and you know The fact that I was not seen as an attractive child And I think all of that really affected myself worth. So for a long time I wasn't positive and upbeat, but as time went on I realized And actually it was at university that I had this sort of epiphany moment where I thought I really need to Get a grip of myself. Either I can drown in this sorrow and pity and thinking I'm not worth it, i'm not even worthy enough to walk out the door, or I need. There comes a time in your life when you say, well, i have to hold my head up. I, i am what I am, start accepting me for who I am, and I think once I'd made that decision to accept myself And not lose myself in the opinions and the negativity from others and To actually fight my way out of that, maya, i actually started to feel good in myself. So I Wrote the book, i wrote it and it was a very cathartic experience and I think just Being able to hear people's experiences that have resonated with mine and Also having the love of my family and having the acceptance of my siblings and Knowing that they were behind me and the support I've been given for my story has made me a very positive person.

    Angela Walker: 44:45

    Thank you so much for sharing your story with me. You are really inspirational, barty, and thank you. There's so much more that we could talk about, but it's all in your book, isn't it? Yes, Yeah we can learn more about it. Thank you.

    Bharti Dhir: 44:59

    Thank you, thank you very much, thank you.

    Angela Walker: 45:02

    I'm journalist, Angela Walker, and today I've been in conversation with Barty dear, and if you'd like to find out more about Barty's incredible story, you can read about that in her memoir, which is called worth. If you'd like to see and hear more of my podcast, check out my website on Angela Walker reportscom, and if you know someone Inspiration or that I should be talking to, or if there's an under reported story You think I should get across, then please get in touch through my website. Until next time, take care.

    bhartidhir.com

  • 3rd July 2023

    Are you an entrepreneur seeking guidance on securing investment and navigating the start-up landscape? Join us for an insightful discussion with award-winning entrepreneur, Leroy Lawrence, and Matt Adey, the Director of Economics for British Business Bank. Discover the unique challenges facing start-ups in the UK, especially in the current economic climate, and learn how British Business Bank is helping smaller businesses get the finance they need to start, grow, and develop.

    Leroy shares his experience of taking his innovative business idea, Pigee Post, to Asia to secure investment, as he felt constrained by the mindset of British investors. We delve into why British investors might be hesitant to take enough of a risk and invest a large enough amount, compared to their American counterparts. Matt also sheds light on the efforts of British Business Bank in supporting angel investors and early-stage venture capital funds.

    Don't miss out on valuable insights and advice for aspiring entrepreneurs as we discuss the importance of finding the right investor who understands your vision and goals, and explore the different types of finance available to start-ups. Whether you're an entrepreneur looking to make your mark or simply seeking inspiration, this episode is not to be missed.

    Angela Walker: 0:01

    I'm journalist Angela Walker, and this is In Conversation With a podcast where I talk to inspirational people and discuss under reported issues. Today we're going to look at the challenges facing start-ups, that's, new business ventures in today's economic climate, and we'll touch on angel investors as well. Now we're all feeling the pinch with the cost of living crisis and fuel prices and, according to the Office for National Statistics, the economy grew by just 0.1% between January and March, and it's still smaller than levels seen before Covid. So what effect is this having on entrepreneurs in the UK? Well, to discuss this, i've got two guests today. One is an award-winning entrepreneur who says his hat to take his fledgling business to Asia to secure investment. Leroy Lawrence from Berkshire has come up with an innovative business idea that he says could change the way we shop on holiday or overseas. Hello, Leroy Hi there.

    Leroy Lawrence: 1:01

    How are you doing?

    Angela Walker: 1:03

    Good. Thanks so much for joining us Now. We'll come back to you in a minute. Let's meet our other guest, Matt Adey, who's the director of economics for British Business Bank. Hi, Matt, thanks for joining us.

    Matt Adey: 1:15

    Hi, good to meet you both.

    Angela Walker: 1:17

    What exactly does British Business Bank do?

    Matt Adey: 1:21

    So we are a national development bank focused on supporting smaller businesses get the finance they need to start, grow and develop their businesses. We do that in a wholesale way through a wide range of delivery partners, so we identify finance providers who can reach that SME market and we channel finance through them. So to give you an example of that, we have a program called Startup Loans, which is loans to entrepreneurs who have recently all about the start of business and, as of February, over a number of years, we've now hit 100,000 start-up loans in the UK, worth nearly a billion pound of support for businesses. So we're there basically to help. We acknowledge that finance markets don't always work well for entrepreneurs, particularly for start-up businesses, because they don't have the track record. So it's more difficult for them to get finance and you can't get a track record without finance and you can't get a track record. It just sometimes doesn't work for people. So we're there to help with all those gaps in the market.

    Angela Walker: 2:30

    And I know, leroy, that's something that you struggled with finding investors in the UK. Tell us first of all about your business venture and then a bit about the trouble you had finding British investors.

    Leroy Lawrence: 2:46

    Sure well, Pigee the homing pigeon. It's a mobile app. It's a mixture of a marketplace and a omnishipping operation for tourists. It allows tourists, whenever they travel anywhere in the world, to buy anything they like in a shop and have it sent directly home from their shop, directly back to England or wherever they're from.

    Angela Walker: 3:05

    I know that you had trouble raising investment in the UK previously. Tell us about why you decided this time to look elsewhere for funding.

    Leroy Lawrence: 3:16

    When I've tried raising money in the past, i felt a bit condensed into smaller ideas. I'm a big thinking entrepreneur who thinks globally, but I feel that when I'm trying to raise money in the UK I'm being squashed into well, let's just raise £100,000 and let's see how quick we can get to profit. Let's put you in an AI scheme, which, as I see it, it's great if you want to reduce a tax burden and risk in that sense. But it's a bit of a mindset of we're probably going to lose in this investment, so let's cover our back, kind of thing. And I felt that I connected more with the kind of American capitalist idea which is kind of go big and trying to make as much revenue as possible in a new business and discovering new fledgling markets. I felt that there was more connection with the way that American investors thought about business and the way that I thought about business and I think that was backed up with. I think America The start-ups make 20 times the returns compared to start-ups in the UK. So for me it was a no-brainer really.

    Angela Walker: 4:24

    And you felt, i gather, that British investors they basically weren't willing to take enough of a risk and invest a large enough amount. Is that right?

    Leroy Lawrence: 4:35

    Yeah, i mean I could spend a lot of time collating together lots of angel investors. In fact, it's easier to raise money through angel investors than it is in the US, because in the US you need to go through a CF regulation or SEC, which means you have to do crowdfunding, and they're really strict about which angel investors can invest. You have to have like a £200,000 revenue, $200,000 income, all these sorts of things, and over a million in assets, not including a house. But so in on the angel side it's easier in the UK and things like that are so attractive. But this particular business, it's a complicated business where we, at the beginning of it, we hadn't really figured out yet our product market fit. Just like most start-ups, we hadn't figured out exactly what it was even going to be. So, even with my successful background in business and start-ups, when I spoke to investors, it was difficult to get them thinking okay, well, this is something that you know we're going to buy into, maybe just buying to you. We're going to think really big on this. This is going to be something that's going to IPO in the future. I just thought that whenever I speak to investors in the UK, i've spoken to probably more than most people have probably 5,000 investors. Because of my background over the years, i get the feeling of thinking small and not thinking really, really big when it comes to kind of global business.

    Angela Walker: 5:56

    Matt, what do you think about what Leeroy is saying? is that something that you see at British Business Bank?

    Matt Adey: 6:03

    I think this is a challenging thing to do finding a match between someone with that business proposal and that opportunity they've identified and finding the right investor who can understand and get that pitch and buy into it and invest in it. I think, as you say, leeroy, at the early stage we do have quite a thriving angel community in the UK. We support that, particularly for angel networks that are outside of London to try and you know if there's a gap they're more likely to be away from London and the southeast, so we try and channel money there. But I think when you're looking from a, you know you've got the great idea and you can see the IPO's at all years down the track. Often it's different investors at different times. So you'll get an angel investor early and then maybe you'll move on to an early stage venture capital fund and then a late stage venture capital fund. I think what Lee Roy said is spot on in terms of if you compare with the US, there's actually about as much equity finance at the early stage in the UK as in the US if you adjust for the size of the country, of the economy. But there is more of a gap at the later stage in the UK And we're trying to address that gap by putting more of our effort into the late stage. But it's a challenge at the start for everyone because you've got to find the right investor and they need to understand you and you need to understand them And that's quite a difficult matching process. So it's not unusual 5000 is a big number, but it's not unusual that people, after with very good propositions, don't immediately match with an investor because they need to find the right person that understands them.

    Angela Walker: 7:37

    Matt, you just touched on angel investors.

    Matt Adey: 7:39

    for people listening who don't know What exactly is an angel investor, Well, an angel investor is someone who uses their own personal resources and wealth to provide equity investment to start-ups and early stage businesses And they're looking to usually take a minority stake. But they tend to take a relatively hands-on approach to helping that entrepreneur because they've put their own personal money at risk, So they're acting like an angel to help the business. That's where the word comes from. The relationship is a bit more business-focused than it might apply from the angel name.

    Angela Walker: 8:21

    And you've done this from both sides, haven't you, Leroy? You've been looked for investors for your current venture and previous ventures, but you've been an angel investor yourself, too, haven't you?

    Leroy Lawrence: 8:30

    That's right. yeah, I've invested into numerous start-ups in the UK and in the US and Africa as well.

    Angela Walker: 8:39

    And tell us again about Indonesia, because you're talking to us from Indonesia right now. Tell us about how your business is taking off over there.

    Leroy Lawrence: 8:49

    Yeah, it's going really well here actually. So I was here last year for a month when we did a pilot on our MVP, And this year we've been here for two months so far and we've been setting up a new sales team meeting with lots of VC investors between here and Jakarta and Singapore, And, yeah, the energy is right. We've been a bit fortunate that we I created an algorithm and asked lots of questions to decide where would be the best location for this particular business, And it's set in Indonesia at the top of the list. And we've been a bit fortunate that there are lots of other reasons why it's been kind of kicking off here. One of them is that there's no omni-shipping here, very few omni-shipping options here. We haven't even heard of offering, but there is tons and tons of logistics and shipping and growth in that market. So we've been fortunate in that sense where we do some offers to renders that have never had before And everyone. Obviously the place is full of tourists in Bali from China, from South Korea, Australia, UK, US, So it's a real tour. It's a hot spot for this particular type of business. So, yeah, it's an ideal place for it to start. It's been going pretty well so far.

    Angela Walker: 10:01

    So talk me through it. I'm on holiday in Bali. I find this beautiful statue, but it's too big for me to put in my suitcase or my hand luggage. Talk us through how Pidgey works.

    Leroy Lawrence: 10:16

    So we're about changing consumer and vendor interactions. So you treat every physical store like it was an e-commerce store. You walk into a shop. You say you'd like to buy this statue, for example. You might say it's too big to get home or too fragile. The vendor will say don't worry. Normally they'll say don't worry, we'll go and call DHL, we'll get a quote for you, we'll come back to you tomorrow and see if you can send this product home. But a very few percentage of people actually do that, because they don't necessarily trust that. But then they've just met. They don't know how much it's going to cost. And you know when you're on holiday, especially if you have to wait, if you can't buy something there and then you're unlikely to come back and buy again.

    Angela Walker: 10:58

    You don't want the hassle, do you? We want instant gratification.

    Leroy Lawrence: 11:03

    So with this we've removed all of the friction. You just tell them what you want. The vendor says sure, unlike with a normally e-commerce store where you list everything your own, they don't list anything until you ask for it. So they list product on the fly on request. They take your photograph, wait, dimensions, description, take a second to do. They then click save. You then connect with them. Normally buy a scan in their QR code. But last week we just released this new feature that just when you're walking past the shop that's registered on pity, you'll get a notification saying hi, angela, it looks like you're in so-and-so art shop. Would you like to connect? Sure, i'd like to connect. It then shows you everything in that store, just like an e-commerce store. You add to cart those products you want to buy, go to checkout, pay for it, including shipping, forget about it, go back to the beach, enjoy yourself, enjoy life. From the vendor's point of view. They receive it saying Angie has bought this, this, this made this order, please fulfill it. You then package that into one parcel, click send same down. Next day one of our shipping partners, like FedEx or LionParsal, turns up. They collect it, scan it, assigned, they're off. So it's really easy for the customer, really easy for the vendor. More sales happen before, it's easier to do And you get repeat sales as a vendor, which normally don't get with. We're there with top.

    Matt Adey: 12:26

    I wish you existed about a decade ago. I've got a lovely engraved map that I bought in Malaysia, kuala Lumpur, a Few years ago and I bought it and thought how do I get this home? and paid a fortune, yeah, to the hotel that I was staying out. For them to arrange the HL to get it back cost far more than the thing that I bought. So I wish you'd been around a decade ago.

    Leroy Lawrence: 12:47

    Here we are.

    Angela Walker: 12:50

    So obviously Leroy's found, you know, he's identified a problem and He's come up with a solution and and it's taking off. How do other people Matt who've come up with a small business idea, get it to fruition? How do they go about even Trying to secure, you know, loans to get going?

    Matt Adey: 13:13

    So I think I think what you need is The idea is great, but to convince an investor, you need you need a business plan, and they can come in different shapes and sizes and different investors will be looking for different things. But you need to set out, there needs to be something they can look at and actually assess the viability and potential of the business. And often you know they are willing to take a risk. These are risk investors They're not looking for It's not like a bank looking for a bank loan And they recognize that it takes time to generate those returns and they're in for the longer ride. But you do need To convince them about the proposition, but also the way in which you get there and the steps that they can see that you will get there to a profitable business Where they will generate a return when they exit their equity investment. And that's kind of different from a bank loan where the bank is looking to see if there's any security. So if the loan doesn't get repaid, have you got any security you can offer up? Are there any assets you can offer and pledge against that? So it's quite important to think about The nature of the business. Is it something that's you know suitable for a bank loan or is it a riskier proposition? But where the long-term potential is greater, where you're more likely to look at investment equity investment, because the majority of businesses that use finance use debt, not equity. But it's those high-grace potential firms that need equity and you need to. You know You need to be as convincing as you can in your case And find the right investor, and that takes time to find the right one, unfortunately.

    Angela Walker: 14:38

    But what point, though, do you sort of start pulling a picture together? I mean, how far along the the line and and at what point do you kind of go? Well, i've come up with this idea, but I haven't managed to find an investor. I perhaps I should move on to something else. I mean, how long should people spend, you know how much time and money and energy should they invest in their initial idea, before they kind of make a decision as to whether they it's even viable?

    Matt Adey: 15:06

    I think the first thing you do is you try it out and test it out on people. It could be friends and family to start off with, and they might be a bit biased on the positive. But but talk to other people who started a business, find out how they got it And sort of try to get yourself into those networks of Businesses, and lots of founders are very happy to share their experience, and so I encourage people to sort of go out and have those conversations before they're actually in a formal pitch Situation where they're pitching to an angel investor or a venture capital fund. Have a go, get feedback from people, talk to people who've done it before, see how they did it And make use of whatever contacts you've got to Shape and inform that idea before you're at the formal. Will you guys give me a hundred K or 500 K to investment in this business, and that takes a bit of time and there's no one answer. But you're not going to go from the idea and a week later you've got a convincing, convincing proposal that an equity investor will go for. It'll take you longer than that.

    Angela Walker: 16:11

    You've got to be in it for the long haul. Leroy, you know it sounds pretty gruelling. You spoke to like 5,000 investors and you know What keeps you going when you you're just Trying to convince people to invest in you and your idea and you keep getting not backs. I mean that's tough, isn't it?

    Leroy Lawrence: 16:32

    Yeah, maybe I'm a bit weird. I don't really care, i just keep going. Personally, i'm like all my soldiers are turned on. I don't, i don't quit and I hate quitters. I'm honest with you, i hate gritty. I just need you need grit. I don't really care what the how difficult the problem is. If I decide I'm gonna do something, i'm gonna do it and I get massive joy. I've done it in the past. I started up with stockbrokers. My boss at the time told me you'll never had even said it to He's gonna start stockbrokers too expensive, too difficult. So that's something I decided I'm gonna do that now. So I did that and just maybe that's just how I tick. I just if I decide I'm gonna do something, i'm gonna do it. And when you start a business, especially in technology, what it begins as it may be something completely Different by the end anyway, and the most important thing in that business working is bit of timing, bit of luck And the founder being someone who doesn't quit and is continuously learning.

    Angela Walker: 17:23

    And so what advice would you have, for you know other young entrepreneurs who've got an idea and they might be, like you know, in the really early stages.

    Leroy Lawrence: 17:32

    Learn as much as possible. Go on an accelerator, if you can do. Anyone ever selling you any kind of service. So advice for money completely ignore them, because there are so many people hounding you Trying to take money out of your happy pocket. Instead, speak to founders as much as possible, especially if they're in that marketplace that you're reliant on, and expect your first business to fail doesn't matter. It's not really a failure, it's just a lesson that you're learning. Keep going. Don't get too emotionally attached. I could go in all day.

    Angela Walker: 18:06

    Well, according to Companies House, like 2022 was a record year for company registrations, and more than a quarter of a million new businesses were registered. Matt, what does that tell us? Is that something that resonates with you?

    Matt Adey: 18:21

    Yeah, i mean it's been a unusual to put it politely a few years with you know Covid and the energy crisis and difficulties of last year, and what tends to happen when you have those big shocks to the economy you have an increasing number of businesses that close but you also get more startups. It creates a bit of churn in the economy And in the long run, that can be a good thing And it's an opportunity. If you go back to, say, the dot-com bubble from 2002, when all those early startups on the internet collapsed and funding for that collapsed, but the investors who got back in that market quickly after that a lot of them made a lot of money because everyone had backed off of that and there were some great opportunities there And the people that went in and invested in them actually made a lot of money over quite a long period of time. So things are volatile at the moment, but at the moment it is at some sense. It's a difficult economic climate because of the shocks to the economy and the slow growth, but there's an opportunity there and people who've got good ideas can make a lot of money and there's more churning the economy, more change And that's an opportunity for entrepreneurs. So don't hold back just because it's difficult times. Actually, a lot of the best ideas come out and thrive in that difficult environment.

    Leroy Lawrence: 19:44

    Warren Buffett said, only investment with blood on the streets.

    Angela Walker: 19:50

    And what is it they say about necessity being the mother of invention, is it That's a phrase like that? So tell us, Matt. what else does British Business Bank do? I know that it's got a lot of schemes to help startups. Talk us through some of those.

    Matt Adey: 20:08

    So I mean the first thing and the most useful starting point would be we've got a finance hub on our website, so that points, you know, go through different types of finance that startups can potentially use, gives examples of providers that we work with through our programs, and just answer some very basic questions about what these you know. If you don't know what crowdfunding is or you don't know what an angel investor is, there's a description there that can get you started. But that really is only a starting point. It's really useful and I'd encourage businesses to look at that. But then go out and talk to people. As Lee Roy said, talk to people who've done it and tried and, you know, get the basic ideas and then talk to people who've done it in practice. And we do have, as I mentioned, startup loans. I mentioned the regional angel program. There's a number of things we can do And there's lots of other places that where support is available. There's so many of them it's difficult to keep track, but we give some examples of links to places where you can get grant supports from local authorities or schemes like that, or and so on. So there's quite a lot of information there. I think you know we talked about how many new businesses registered with companies house last year and there's nearly. You know there's over five million small businesses And a lot of them are sole traders in the UK and there's a huge number of new startups every year. The majority don't necessarily use external finance because a lot of people managed to do it from their own savings, but we've got data which suggests about one in three businesses use external finance and the majority of those are debt and it's quite simple stuff like overdrafts and loans and credit cards. Only one or two percent actually use equity finance. But if you are going to become a high-growth business, you are much more likely to have had equity investment, because that's what really gives you that boost because you've got slightly more time, you're not immediately trying to pay off the overdraft or repay the loan and you're getting advice from your investors. So it's only suitable for a small number of businesses. But those that become high-growth and really grow are much, much more likely to have used equity than those that just establish and carry on as a little sort of small business on its own.

    Angela Walker: 22:17

    So you're saying, because they've got that capital investment, they can think big.

    Matt Adey: 22:22

    Yeah, maybe not as big and as quick as some, like Lee Roy, would like, but the evidence is, the higher growth for the firm is, the more likely they are to have used equity finance.

    Leroy Lawrence: 22:37

    When you're pre-seed, and when you're pre-revenue and pre-seed, it's almost a possible market for anyone right now because, for a start, you have all of the VC and seed investors saying, sure, yeah, we invest into pre-revenue, but in reality they don't anyway and, even worse now than before, they are just being really picky and only investing into things which are already winning, already generating revenue and basically A round plus investments. So those are founders. wait for a lot of time. speak into people who are just keeping track on them for the future. if they survive, which people will survive because of what happened in funding to survive in the first place. So lots of would be really great businesses at that pre-seed stage of being kind of missed out on. And then you've got this trend following of investors as well, which is today the trend is AI. So everyone's doing this following the sheep into AI, of which the same maybe 2% of them will be amazing companies, the same percentage of any other kind of trend of companies, and they're not investing in anything else, and so they're kind of ignoring their thesis of let's be safe for a bit and investing into that trend. It was the same thing with Web3 the previous year and it was always some trend that everyone's following from a boom to a bust into. And the thing is, when you're a VC investor sometimes as well, when you keep raising these funds because it's such a long horizon for returns as well you don't need to answer too many questions all the time to your LPs and GP fund investors because they almost forget they invested 7 years ago into something and only 10% of them actually returned. But I think They were doing a much better job if they actually just did what they were supposed to do, which is venture, which is, take risk on great ideas in the big enough market that can return big enough multiple for them and stick to that, rather than just forgetting their fundamentals and thinking, sure, let's just follow this trend and ignore lots of the other communities that are out at the moment.

    Matt Adey: 24:38

    I mean that's so if I could just come in on you. I think that you do get trends and hot topics that become the big thing for a year or two and often fade away. But that's why I'd advise that you talk to other people who raise finance and what investors did they go to? because there are investors who don't just follow the trend. There are investors who are competent in a certain area of business. They know that industry and they know how it works and they're willing to invest in it. But it takes time to find them. So that's why I'd say go to other people you know, you know or you heard of. Find out about people who raise finance. Like most people will talk to you about it and ask them which investors they went to, who gave them a fair hearing, and do the best you can that way.

    Leroy Lawrence: 25:23

    Yeah, it's so difficult to get in front of the right investor because the amount of times we found wow on their website and from their feedback, what they're looking for, that's exactly us. You drop them an email or you apply and I don't even read it unless, unless it's a warm introduction. It's much worse in America than it is in the UK, but unless it's a warm introduction, if you're not networked, they're not going to listen to it. So try to, and sometimes they just look at it and give it such little attention that they're not even reading it properly and understand. And I get bombarded with investments anyway that loan of VC or a big agent investor, but unless you're. The ultimate thing is you have to be well net worth and get warm introductions to the ideal investor as well. Here in Asia the traction I've had of investors in the space of two months is about four or five times more than two years of trying to even get in front of investors in the UK or the US, where we can't even get a look in. Here I speak to fund partners all the time very easily, very easily, and have good meetings, two hour meetings, conversations in depth, whereas in the and these guys have a lot more money to invest right now, but their economy is growing much faster. They're in a much better position economically than we are back in the UK and in the US to an extent when it comes to startups right now, but they're actually doing it eventually how it used to be done, whereas it shouldn't be a situation where the meritocracy has gone. Whereas a founder, you can't even get in front of someone to let them know about your idea. That's a real problem both in the UK and, even worse, in the US at the moment.

    Matt Adey: 27:04

    If I come back on that, i'm not saying it's easy at all, but the amount of equity finance from angels VC and those sorts of professional investors has gone up significantly in the UK in recent years. If you go back a decade ago, it was a fraction of what's gone Now. Yes, it has come off in the last since last summer And there was a bit of you know there was a peak in 2021 and early 2022 in terms of values, but we're still even in the first quarter of this year. Equity was going out at the same sort of rate as it was back in 2020. So it's a much bigger market than it was 10 years ago. So, whilst I'm not saying it's easy by any means, there's much more deals been done in the last sort of four to five years than there was in the decade before that. It's still not easy. If it was easy, lots of people will be doing it, but there's a deeper market now in the UK than there has been for a long time. So I wouldn't. You know. It's not saying it's easy, but there is hope.

    Angela Walker: 28:11

    Leigh Roy, what's going on with PG now? What's the next step for you? You've teamed up with some great partners from a delivery point of view.

    Leroy Lawrence: 28:19

    Yeah, so we've partnered with FedEx, ups, lionpartsall. We're about to sign a partnership with one of the oldest cargo company in Indonesia who reached out to us as well. Hopefully tomorrow actually tomorrow we're doing that So really good. In that sense, people are pretty open to business conversations, which has been really helpful here. And again on the VC side, you know your investors are your partners, because often founders don't realize that they think their team is just the people on their pitch deck, but in reality, good investors are your real team and you've got problems, questions, you need help, guidance. First thing you should do is go back to investors and get that advice And we've had some. Obviously I'm not from Indonesia, so there's a whole wealth of information for me to learn here, and we've got some really good VC investors here who have been really into here and in Singapore, who have been really into what we're doing. They understand what we're doing and they've come in to get involved. And in our current round we're raising $2 million at the moment and we're probably going to close it next week.

    Angela Walker: 29:25

    At the moment, And what about expansion? You know you're in Indonesia now, but you know this is a global concept, isn't?

    Leroy Lawrence: 29:34

    it. Yeah, after here, thailand, then Mexico, but for me I feel a bit sad because I really wanted this to be a British business that went around the world and did amazing things, but I couldn't get any of that interest or traction at all and I'm a four times founder who's won awards, been CEO of all kinds of businesses and I still imagine you're a first time father, i know but I couldn't get any kind of backing at all, the kind of backing I need it, and anyone spoke to the. What they were? yes, you can get a £25,000 grant, but what I'm ever gonna do with that? the only reason we even got this far? because I put the money behind it to get to here, and if I hadn't had that funds, it would just be another pipe dream that would never make it, whereas you know we're on on target to do big things and this should have been British money behind it. To be fair, this should be in brilliant British investors behind it making work and seeing the reward Matt, let's bring you in there.

    Angela Walker: 30:23

    Why did Leeroy you know you've said yourself he's got a great concept, he's got a great business why did he have such a trouble finding investors at home in Britain?

    Matt Adey: 30:36

    it's difficult for me to you know, it sounds like a great idea and you sounds like you've got to record, leeroy. So, as you say, you're better placed than a lot of people who start this off who haven't got that track before. All I can say really is it's, it's. Finding the right investor is difficult and the more money you're trying to raise, the more difficult. That is because you need someone who can fit with that. I do think there is better availability and capacity in the UK on the investor side now and there's a bigger number of angel investors than they used to be and there's more venture capital funds than they used to be and this crowd funding options, which didn't exist 15 years ago. So I'm aware doing all we can support and try and strengthen those channels and signpost people towards that those types of finance and providers of those types of finance. But there's, but it is difficult, it's not easy. I say, as Leeroy said, get as much advice, try and get those warm introductions to the investors rather than just the cold email, because they do get hundreds of thousands of those and it's difficult to stand out in a in an email inbox. So try and get those warm introductions and prepare yourself as best as you can any final thoughts, leeroy, before we wrap this up, Yeah, i mean, look so well.

    Leroy Lawrence: 32:06

    We couldn't be more prepared when that's six months exhilarated, so, graduated from that, did everything we can do thousands of emails, everything we can do. I've raised a lot of money in the past from different different countries. I've raised money in a millions from different countries but the UK. I really, really struggled to ever raise money in my experience which and it shouldn't be that way we've got. We're so good at making it easy to set up a business and I set up this all around the place. England is one of the best places to set up a business as far as your taxes, set up people and everything. Super cheap, super simple to do so. Even banking, which has been a bit difficult in the past, it's got a bit easier in some instances now. Some digital banks around, it's it. They've got all of that stuff really right. But where we're lacking is imagination, and that's where the US and Singapore leave us for dust and it's really, really dangerous something for our country. We need to be much more imaginative, much more belief in ourselves, much more less risk averse and just go out there and and do some things that are going to change the world, not sit at home when I put 20,000 pounds into a small business, we're thinking really big.

    Angela Walker: 33:16

    Matt, are we lacking in imagination?

    Matt Adey: 33:20

    I think we have lots of great startups in the UK and we know we need to do more to help them scale up. But I don't think it's as much as lack of imagination. It's just really difficult. You know, we benchmark ourselves. Go to the US, where there really is that culture of risk-taking, and we. You know, if we could move the dial on that in the UK, it would help well, that's all we've got time for now.

    Angela Walker: 33:48

    Thank you to both my guests. I'm Angela Walker and I've been in conversation with Leeroy Lawrence, founder of Pidgey Post. Thanks Leeroy, and Matt AD, the director of economics for the British Business Bank. Thank you, matt thanks for the invitation and for more information, check out my website AngelaWalkerReportscom, where you'll find more information about other podcasts in the series and you can see more of my work. And if you know someone who's inspirational or if there's a story you think is under reported, then drop me a line. Until next time, take care

    https://www.angelawalkerreports.com/

These podcasts have been transcribed using AI so please forgive any errors.