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10th September 2025

bbc.co.uk/accessall

Access All – Ep 177

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, you’re very welcome in. Later in this episode we’re going to be talking about a report which says that people with learning disabilities in England die 20 years earlier than the rest of the population.

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You need someone to take the responsibility off the person who cannot make decisions or cannot be understood by a general, you know, nurse.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý More of that later on. Now, a little bit of a handbrake turn here because I’ve got Alex with me in the studio. He’s one of my colleagues from the Access All team, but he’s going to be away for a little while, aren’t you, Alex?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I’m going to Jerusalem covering the bureau for two weeks.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow, that sounds a little bit scary and intense. Why are you doing that?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, so prior to coming on Access All I’d spent a lot of time working at the World Service, and I’d been sent away occasionally to various war zones. Over time I’ve realised that’s kind of an environment which I think I thrive well in because there’s an element of unpredictability. And I wonder if that’s linked to being ADHD.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And you’re ADHD of course.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’m ADHD. And it just got me thinking about other people with neurodiversity in offices, because there’s a lot of repetition in terms of the environment, you’re often in these very quiet places and it can be quite heads down. It must be very difficult for some people to really thrive in work, and then they get frustrated and they’re having to keep applying for jobs.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But Alex, going to a war zone that’s quite an extreme way of making your job unpredictable. I mean, could you not just have gone and made a documentary somewhere else in the building or something like that?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] yeah, I suppose that’s true. I didn’t think of it like that. I just really thrive on that sense of being in quite a high pressured environment. But maybe you’re right, maybe something a bit less extreme. But I also think it’s a real opportunity to learn about what’s going on there. And of course while I’m out there I’ll hopefully have a bit of downtime to maybe find some other disability stories related to Access All. Because we already covered being disabled in a war zone when we looked at the experience of Boshra who had muscular dystrophy. So, hopefully there’ll be an opportunity to focus on that a little bit.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You know, I really like predictability and I’m quite happy if things stay the same week to week. And this morning it all fell apart for me, Alex [laughs]. First of all my braille typewriter, as you all call it, my Perkins Brailler, I started using it and it started poking out random dots.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh no.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And then my computer stopped working, so I had to try and bring the script up on my phone and try and gently and carefully type out all my notes on a very dodgy typewriter. And honestly, I have half a script today so you will have to give me a little hand I feel as we go through the podcast. Is that okay?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Obviously when things go wrong for me, which they frequently do at the ÃÛÑ¿´«Ã½ with technology, let’s be honest, I can often just ask another colleague if I can borrow their computer, or I can go down to the hub and they have spares available. Whereas I’m thinking they probably don’t have an extra computer that has all your settings and all the requirements that you need.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, I can’t just grab another computer. And that’s why being in work can often be a lot harder for disabled people. And on that bright and cheery note, shall we get on with the show?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý On with the show.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This is Access All, the weekly disability and mental health podcast from ÃÛÑ¿´«Ã½ News. I’m Emma Tracey. And if you want to get an episode every week down onto your device, plus some special extra episodes too, you can subscribe to us on ÃÛÑ¿´«Ã½ Sounds. Hit that big subscribe button. And if you want to get in touch you can email accessall@bbc.co.uk. And I do love to hear from you, don’t I, Alex?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, you do. Never fail to reach out to the audience every week.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Alex Collins is my friend on the show today helping me through the headlines and your lovely feedback etc. Lovely to have you with me, Alex.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Great to be here.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, Alex, a few weeks ago we put out a call for people’s disability anthems. It was inspired a little bit by Lewis Capaldi’s return and his song, I think it’s called Survive, all about getting up and keeping going despite mental health and Tourette’s struggles. So, I asked people whether there was a song that spoke to them about their impairment or a song that just lifted them up and kept them going, and people didn’t disappoint, Alex. Can I tell you about some of the ones that we got in?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Please do.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right. So, Helen, who has epilepsy, has had it for many years, she has suggested Seizure Boy by Watsky:

LYRICS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The first thing that happens is the world goes black. Just hear a little snap when your neck rolls back. You don’t bite your tongue off or foam at the lips. Before you hit the ground there’s a moment of bliss.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Honestly, I’ve been loving listening to your choices because this is like a rap song from a young guy about having a grand mal seizure at school and the kind of anxieties around that, but also poking fun at people’s misconceptions of seizures, about people biting their tongue and stuff, and also giving you a little bit of education of what to do if someone has a grand mal seizure, all in a very cool rap song. I think it’s fantastic. I think it’s a really good example of disability awareness.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And I guess you don’t really hear about disability experiences much in songs, do you? But I love pop music and I love a line when I’m singing in the shower. But I never really reflected on hearing disability experiences in songs or mental health problems. I think it’s very progressive.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, it is. Seizure Boy isn’t the only one. So, Steph got in touch and she chose a song called Hi Ren by Ren.

LYRICS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi there Ren, it's been a little while, did you miss me? You thought you'd buried me, didn't you? Risky. 'Cause I always come back, deep down, you know that deep down, you know I'm always in the periphery.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Ren had Lyme disease, and that kind of ran into mental health issues, and he’s really struggled with his mental health over the years. And Hi Ren is the rough, dark side of his head talking to his personality. He said he used to fight against difficult mental health experiences and rage against the psychosis he had and the dark thoughts and all that kind of stuff.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý To write a song around that issue to me is such a political act, because so many people with these conditions they often mask and they feel like they can’t talk about it, and that in itself is quite stressful. So, the fact that these lyrics are out there I hope for people who maybe have these conditions it might empower themselves to maybe be more open with it with family members or friends or employers or whoever.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s quite powerful really. Have you got one?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, Drew, a friend of the pod, he messaged us to say how about Ellie Dickson and the song Loose Change which has just come out this year. I like it. It’s got a Billie Eilish vibe to it. It sounds very contemporary with a lot of nice harmonies. And again that’s sort of, I think, an anthem to people who have some form of neurodiversity in any form:

LYRICS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Turns out my brain's a bit different my therapist said, my thoughts just roll around like loose change up in my head.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I particularly like the lyric my thoughts roll around like loose change. I was waking up this morning whizzing around with many thoughts in my head about my trip away, as we’ve talked about, and also just general life stuff around bills and just the strike that’s on in London and how I’m going to get to work.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The Tube strike.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The Tube strike, yeah. I just thought she really captures again someone who might have a neurotypical mind how they’re functioning in the morning. So, I thought again hats off to her for writing a song which made me feel represented.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, if you have another disability anthem – this feels like an item that might run, or might not, this might be the last to hear of it, let’s see – but if you want to tell us yours email accessall@bbc.co.uk, or find us on Instagram or X @ÃÛÑ¿´«Ã½AccessAll.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s do some headlines, Alex. A disabled medic was told that she’s not a real doctor.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, this is about Dr Alice Gatenby who works for the NHS in Wales. She has epilepsy so she doesn’t do night shifts. But she was told by some of her colleagues that she wasn’t a real doctor because she wasn’t doing shifts like everybody else. And you think that’s not kind of an appropriate thing to happen for someone in that position, and you think how many people in other professions who also need reasonable adjustments and how many of them have maybe left their jobs because they’re not being supported by the profession that they’re in.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. It’s interesting because when you watch all the medical dramas, as I sometimes do, being a doctor is based on being able to do 24-hour shifts with an hour’s nap in a cold room and all this kind of stuff. But I mean, I think lots of the disabled doctors that I’ve spoken to over the last few years really say that it doesn’t need to be like that. And another thing that they often say to me as well is how important it is for patients to see a doctor who has an impairment or an illness or a different way of doing things because it’s relatable. You’re quite vulnerable when you’re in a medical situation as a patient and if you’re a wheelchair user it’s good to be able to see a wheelchair user doing that job. I think it’s been felt that it’s a shame that people are discriminated against if they have to do slightly different hours or do slightly different tasks. I remember we had Dr Grace on a few weeks ago and she was talking about just getting the charts moved so that she could grab them, because they were a bit high, just little things like that. Doctors are disabled to I think is what we’re saying, isn’t it?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Definitely. But it also makes me think about you could apply this issue to any problem. And what it comes down to so many people, I wonder, if they’re disabled they think I’m the problem because of my health issue or my disability, therefore I can’t do the job to the best of my ability. But when I’m thinking about this story you can say to yourself, is it my health problem that’s the problem or is it the system that I’m working in, am I being supported, do I have colleagues that really understand the challenges that I face if reasonable adjustments are not made.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, going back to Dr Grace she became disabled, she became paralysed during medical training, and she said she’d had so little exposure to disability, so little training around it. So, you could be right there in terms of specifically the medical profession, but lots of other professions as well. So, a bit more awareness, whether we like that word or not, or a bit more cognisance of different people’s situations goes a long way I reckon.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Just to be fair here, NHS Wales Shared Service Partnership, who Dr Gatenby worked for, says it is an inclusive employer and it does take steps to ensure people with disabilities can thrive in their workplace. So, I guess that’s some important information to state.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Elsewhere there was a really, really lovely story from Nicaragua this week. Did you see this?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I did. This is about the deaf community in Nicaragua. Now, in the 1980s there was a move to bring deaf people into classrooms. A culture grew up in the playgrounds where these Nicaraguan young children were sort of creating their own sign language.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Which is absolutely fascinating seeing a language grown from scratch. These deaf children were brought together after a really, really terrible time in Nicaraguan history, and they were brought together into a classroom. They’d never been with other deaf people before, and they didn’t have a language because they had been very much taught using oralism, which is around making people learn to lip read and feel necks for vibrations; basically learn to speak rather than do sign language. And these deaf children were brought together and needed to communicate with each other. And the fascinating part is that they built a language up from scratch, which has now become an official sign language in Nicaragua. How cool is that?

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s really cool, isn’t it, as you say what they’re doing there. And it makes me think about how playgrounds and how people, kids they often create these little languages that often maybe some adults might not understand. And these have very many benefits, including a sense of community, a sense of safety. But also I guess there’s unintended issues around this. It's maybe a way for you to communicate about people around you who you might want to point out something that other people can’t understand. You get what I’m saying?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs] it’s like when I hear people speaking Irish on the Tube.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There you go.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They’re doing it to go incognito. These different languages, we could talk about autistic scripting here where people struggle to communicate and they use script, so they use the words from a cartoon they love or a show they love to communicate, and turn those scripts into a type of conversation. And it’s just another fascinating facet of deaf and disability culture.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Alex, thank you so much for being with me for this part of the episode, it’s been really enjoyable.

ALEX-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thanks for having me. See you around.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re not just a podcast. Find Access All on social media and read our articles on the ÃÛÑ¿´«Ã½ News website.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý There has been a lot of change in government this week, sparked by Angela Rayner’s departure due to her tax affairs. One of the things that disability rights campaigners have noticed is the appointment of the very experienced MP, Pat McFadden, to the Department of Work and Pensions. Just a few months after Labour failed to get their bill, designed to cut disability benefits, through parliament in one piece. Here’s a clip of Pat McFadden on the Today programme back in June when the benefits bill debate was really raging:

PAT-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý We’re in the middle of a decade which is set to see the number of people on long-term sickness and disability benefits double over the course of the decade. A thousand people a day go on to PIP; that’s a city the size of for example Leicester, year after year after year. And welfare reform is not an easy issue, and to govern is sometimes to have to grasp issues that aren’t easy.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý ÃÛÑ¿´«Ã½ political correspondent Henry Zeffman is here to talk about the significance of Pat McFadden, the coming in charge of the Department ffrWorks and Pensions and therefore the benefits system. Thanks for joining me, Henry.

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Pleasure.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Who is Pat McFadden?

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He’s one of the most experienced people in the Labour party. He’s been an MP since 2005, but he’s basically been in the Labour party all of his working life. He was a government minister towards the end of the New Labour years, so he got fairly high in government under Gordon Brown. When Sir Keir Starmer became leader of the Labour party he ran Labour’s successful general election campaign. And then when they won the general election last year he became Chancellor of the Duchy of Lancaster, which is an extremely fancy way of saying that he was right at the centre of government trying to make different parts of government work better together. So, it is quite a change that he has now been given a very specific role as Secretary of State for Work and Pensions.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, what’s the significance of his appointment to this role and what will that entail?

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, look, as you know better perhaps than me, the government had a real mess over its attempts to reform welfare earlier this year. I mean, ultimately the government had to back down on its proposals for Personal Independence Payments and for Universal Credit, or most of its changes to Universal Credit, not once but twice. The outcome of that, the most significant outcome of that ultimately was that Sir Stephen Timms would lead this review which will report in autumn 2026. So, I think all of that is still as it was. But I think the appointment of Pat McFadden does signal that the government wants to look at welfare reform again in some form.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Interesting. We’ll have to see what happens there. The DWP seems like it’s being beefed up, revamped. I’ve heard people call it a super ministry. What’s happening there?

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, something quite technical has happened which is that skills policy, which previously was part of the Department for Education, well it’s been moved around a bit over the years, is now with the Department for Work and Pensions. So, there was a minister, actually another figure from the Blair/Brown years, called Jackie Smith, Baroness Smith, she was ÃÛÑ¿´«Ã½ Secretary under Gordon Brown among other things, she returned to government from the House of Lords last year and she was working on skills policy for the Department for Education; she’s now doing that at the Department for Work and Pensions, working with Pat McFadden. And I think the addition of skills to this brief shows that the government perhaps wants to emphasise the work bit that’s in the department’s name a bit more, trying to find ways to give young adults especially skills which mean that they’re not entering economic inactivity so early in their lives.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, they’re kind of bringing in skills so they have more control over getting as many people into work as possible maybe?

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I think exactly that. But obviously there will be lots of Labour MPs, not to mention lots of people in the country watching closely to see whether the other side of that coin i.e. the government trying to change eligibility for some benefits and trying to get people into work that way, whether that question is reopened as well. I wouldn’t be surprised if we get more of a sense of what direction Pat McFadden wants to go on this before that Timms Review reports in autumn 2026, not least because if the government wants to spend less money, or at least increase spending more slowly on welfare than it’s currently projected to increase by, then they will need to start making policy changes sooner rather than later.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Interesting. Okay, Henry Zeffman, thank you very much.

HENRY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Pleasure, thank you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý People who have a learning disability or who are autistic in England are dying almost 20 years younger than the rest of the population. That is according to a much delayed LeDeR report, which is an NHS report, which was published earlier this month. We’re going to speak to one of the authors of that report a little bit later and talk about what some of the solutions to this might be. But first I’m going to speak to Lisa Every. Lisa is the aunt of Chloe Every who died in 2019 in an NHS hospital aged just 27. Lisa, thank you for joining me. Could you briefly explain to me Chloe’s disabilities and the special care that she needed?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Chloe was diagnosed when she was about three with myotonic dystrophy, and she also had special needs learning disabilities, so she lived a great life.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. And she went into hospital in 2019. She had a form of cancer, she was pretty ill. What do you think went wrong with her care at that point?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Chloe went in and she saw a very nice nurse practitioner and they did some x-rays because she was complaining of back pain. So, this is the end of April. And she went home, and then my mum got a call to say, bring her straight in. She had metastases I think it’s called of all the liver, but they never, even till Chloe died, they never confirmed that it was cancer because they didn’t do any biopsies or anything like that because there was a bank holiday. Nurses would come and go, so Chloe got no clinical, like there was no leadership, no one was telling anything, there was no pain management. People were absolutely making it up as they go along.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And do you think it was because she had a learning disability?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I do. Because the thing is I’ve got a consultant shouting at her, asking her what’s wrong, and I’m telling him to get out because she can’t answer. She can’t articulate the fact that she can’t take tablets or she’ll only take something if it’s strawberry flavour. They’ve got no time, there was nothing there. There was an LD nurse that came on the day I was there; there were two, one was heavily pregnant and she left the next day, and the LD nurse. But she was administration so she wasn’t even a nurse, she was just in the office.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s interesting actually Lisa, because this LeDeR report has made many recommendations, but one of the big ones was around LD nurses, learning disability nurses and that they need to have a more direct role with patients where possible. Do you think the LD nurse that was there, do you think if they’d had a more direct role with Chloe that things might have been different?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Absolutely, without a shadow of a doubt. Since this happened, Chloe’s been gone now six years and four months, that hospital has employed five LD nurses. You need nurses that specialise in LD. You also need a clinical lead. You need someone to take responsibility of the person who cannot make decisions or cannot be understand by a general nurse.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Stay there, Lisa, with me and take a listen to the next bit. We will come back to you. Richard Keagan-Bull has a learning disability himself. He was on the report writing team, and he says that having learning disability nurses in a more direct role is vital:

RICHARD-ÌýÌýÌýÌýÌýÌýÌýÌýÌý If they had more learning disability nurses in hospitals to be there to be able to support the person with the learning disability, but also to support their family, because some people with a learning disability often cannot speak, some aren’t that verbal and can’t speak, so it does take a bit of time to really get to understand what’s wrong with the person and in fact how to communicate with them. Hospitals are very scary places, they’re nice places, but just more learning disability nurses really would be good.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now we’re going to speak to Dr Rory Sheehan. He is a senior clinical lecturer at Kings College London, and was part of the report team as well. Rory, we’ve talked a lot there, and there has been a big focus on the report on learning disability nurses and liaison nurses. Who are they and what is their job?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, there are learning disability liaison nurses who work predominantly in inpatient settings. But there are also learning disability nurses who work in the community. And they may have again a number of roles to support the person living in the community, liaison with family members or with paid carers if the person has a paid carer. And they would help the person with various health promotion activities, so ensuring that they receive their annual health check at the general practice, maybe making sure the person has information about screening programmes that they’re eligible to access. And there are certain learning disability nurses in the community who have special interests, so one of those might be a special interest in epilepsy, because we know that a relatively high proportion of people with a learning disability also have epilepsy.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s interesting, Rory. How many learning disability liaison nurses are there per hospital? Are they common? Do all hospitals have them?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think that not all hospitals will have a learning disability liaison nurse. We actually have some data from the LeDeR report that we published last year, and we looked at when people with a learning disability go into hospital what proportion of those people have input from a learning disability liaison nurse. And we found that only around a third of those people had input from a learning disability nurse when they were admitted to hospital.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, why are there not more of them? Why are they not there for all people with learning disabilities? Do we know?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The data that we have doesn’t give us that answer.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Doesn’t tell you that?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, it doesn’t. But I think there are probably a few reasons. It may be that not all hospitals choose to fund a post for a learning disability liaison nurse. It may be that when they do the post is unfilled; and we know that in various areas of the NHS we have staffing recruitment and retention challenges. It may be that when a liaison nurse is employed they are covering several different sites or work for example part time and therefore don’t have the capacity perhaps to see everyone with a learning disability who is admitted.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It sounds like quite a lottery there whether you get that support or not. Let’s move on to general organisational issues, which the report found are quite a big part of the reason many people with learning disabilities are failed. What issues were found in the report in that regard?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, so I think you’re right to highlight the organisational systems issues because it was found that in around a third of reviews people had experienced problems with organisational systems. And by that we mean various things. So, it would include how people navigate the NHS system, and we know that that can be quite complicated for people with a learning disability particularly who may have communication needs or cognitive differences. It may be difficult especially when people have multiple health problems and they’re seeing various different professionals at different clinics, possibly at different hospitals as well.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, flagging and passports sounds like they maybe aren’t being implemented as well as they could be and are a big part of that moving through the system?

RORY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. Flagging is an initiative to add a marker on someone’s medical record that will immediately let the clinician who’s delivering the care know that that person has a learning disability and that they might need reasonable adjustments to care. Hospital passports are something that people with a learning disability can take with them to appointments, and it would be a short document that gives some essential information about that person and how they can best access care. So, there would be information about their communication needs and other aspects which are important to consider.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Let’s go back to you, Lisa. You’ve been listening to what Rory said there, what would you pick as the main things that you think should happen to tackle this?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The LeDeR report it identifies there’s lack of coordination for care. The thing is, it’s all very well for the government and the ministers to say this, but you have to implement it. And the poor staff are trying their best, but unless the systems are in place, unless you get the right people in place it’s not going to work.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Lisa, final question, in short, does the LeDeR report go far enough do you think?

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, it doesn’t. It’s okay to keep flagging this but things have to happen, you know, things have to happen. It’s like a talk fest sometimes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s like a what? Oh, a talk fest.

LISA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, a talk fest. We know, like, it should be mandatory that each hospital per capita beds or whatever have five or ten nurses. Just as you get nurses that specialise in paediatrics or midwifery, it’s like let’s get them specialising in LD.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, we did reach out to NHS England and they told us:

NHSE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý While this report shows encouraging progress it is clear there is much more to do to meet the needs of people with a learning disability and autistic people. The NHS has rolled out training to more than 3 million health and care staff to improve the care offered to learning disability and autism patients. And all disabled people have a reasonable adjustment digital flag so they are recognised and cared for appropriately when given NHS support.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you ever so much to Lisa Every, aunt of Chloe Every who died in 2019. And also thank you to Dr Rory Sheehan.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, an Irish woman has invented an accessible pregnancy test for blind women. I could have done with this for absolutely years, so I’m very excited to hear more about it. It was part of her end of year project for a degree in product design from the University of Limerick. The inventor is Leah Shanahan and she’s here to tell me more about it. Leah, let’s go back a little bit. Tell me about the problem that you discovered that led to you beginning to develop this product.

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, the way that we were asked to approach our final year project was by finding a problem area and then finding a solution for a problem in that area. So, the problem area that I chose was kind of like accessibility gaps in women’s healthcare. It was through conversations with blind women, I was speaking to them originally and they brought up the issue of none of them had ever been the first person to find out that they were pregnant. So, it was through this chat that I had with them that I found out, I think of the four women that I spoke with three had used pregnancy tests and two had had to ask their husband, and one had had to ask their sister. And they all expressed how it really deprived them of the autonomy that sighted women experience, where I as a sighted woman will never have to rely on someone else to communicate the results to me. So, that was kind of where that issue came about.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, Leah, currently the most accessible way of doing it is to point the phone and the pregnancy test and either AI or a person down the line from an app tells you the results. Still either AI or someone specifically telling you, and you’re not really in control of it so much. Tell me the difference with yours.

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s entirely these women trying to get their results that they don’t have to involve a third party. So, the way it works, there’s two components of it: one part of it is that it’s a saliva-based test, so that’s technology that already exists. But I, from speaking with the women originally, they communicated to me that taking a urine sample can be quite difficult if you have low vision. So, that’s a disposable test that goes into a reader, and that reader is reusable.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, kind of like a COVID test then, you take a wee swab?

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, you put it in your mouth and it would soak up the saliva in your mouth. You take the saliva sample and then it communicates the results to you through a tactile plus or minus that pops up on the end of the reader. Or you can connect it to your phone which brings you to a web page with a large red or green infographic and screen on your text that tells you what your result is.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow, that does sound like a gamechanger and it sounds like something I would have really appreciated using ten years ago or so. What’s the story with it? I mean, this was and end of year project at college. Has there been some interest in getting it developed?

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Definitely. It’s still very, very early days but it would be great to develop this further and have it out there for people to use.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This is a reusable test. Are reusable tests a thing as well? are they out there already?

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý They’re not. Reusable ovulation tests exist but they don’t have it for pregnancy tests yet. I thought about if you did make a whole accessible pregnancy test and it was great and you could have the tactile results or whatever, but if it was a single-use one it could be expensive for one with the motor in it and whatever to make the tactile results come up. So, that’s why I wanted to make it.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh yes, so there’s a motor inside it pushing up the tactile plus or minus. And what I really liked as well, I want to stick in here too, is that you went for a plus and minus side rather than a braille positive and negative because you said that the women you spoke to didn’t read braille, which is so interesting, because only 10% of blind people read braille as well. I can just see this product, Leah, seeing as it’s reusable, if it comes to market being touted all over the little Facebook blind mums’ group going, does anyone have one of these pregnancy tests, anyone that’s finished with one, you know, the spit bit is disposable so anyone got a few disposable spit bits and a reusable pregnancy test I can borrow for a while, while I’m trying to get pregnant. I love it. thank you so much, Leah Shahanan, and I hope to see your product on the shelves very soon.

LEAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you so much. Thank you for having me on.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That’s about it for this episode of Access All. Thank you to Alex for joining me earlier on. Thanks to all my guests and thank you for listening as well. if you want to contact me you can email accessall@bbc.co.uk, you can get on the WhatsApp and send me a voice message or a text message, just put the word Access at the start. Send it to 0330 123 9480. And you can find us on Instagram and X @ÃÛÑ¿´«Ã½AccessAll. And subscribe to us please, if you haven’t already, tell your friends, on ÃÛÑ¿´«Ã½ Sounds.

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