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24th June 2025

bbc.co.uk/accessall

Access All – episode 165

Presented by Emma Tracey

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EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello, I’ve got Hayley Clarke with me this week. Hi, Hayley.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi, Emma. Thank you for having me. Very excited.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý You are very welcome. Had you heard of Lucas Vezza-O’Brien before this week?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Not before this week.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. He is a 16 year-old student from Manchester, a wheelchair user with cerebral palsy, and he found himself stuck in an upstairs room in his school while everybody else left because there was a fire. Now, it was a small electrical fire, but there was a commotion and then understandably he felt really scared. And he wrote a poem about it. Here’s a clip:

LUCAS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The fire alarm wails its desperate cry, but here I sit, just asking why. No ramp, no chair to help me flee, just stairs that laugh and imprison me. So hear my voice through smoke and ash, make sure the next can make a dash.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, 16 year-old boy starts a campaign because he realises that schools don’t have to have evacuation chairs, so those little chairs that you can be carried down the stairs in in a fire, they don’t have to have them, so he started a campaign. 30,000 people have signed his petition to make sure that all schools have to have evacuation chairs.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a really shocking story because luckily a small electrical fire, but what if it hadn’t been?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, they call them refuge areas, don’t they, where they’re supposedly safe from smoke. But imagine sitting in an out of the way area while everybody else leaves the building, and while you can smell fire. In the longer article that I read he said he was about to just get out of his chair and try and crawl down the stairs, bless him. But that will stay with him.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Was he on his own? I’ve got so many questions.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He was on his own.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý That is so scary. That is scary hearing second hand, let alone being 16 years old and living through that. I think people will be very shocked to hear that.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, but unfortunately disabled people will not be shocked to hear that he was on his own in a refuge area waiting for everything to pass, because lots of them will have gone through that. But to finish this bit on a bright and happy note, as I say 30,000 people have signed his petition and hopefully he’ll get somewhere with it. Well done Lucas Vezza-O’Brien.

MUSIC-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Theme music.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý This is Access All where you will find the best disability interviews, news and discussion. I’m Emma Tracey. A bit of a theme this week about disabled people being where they don’t ought to be: Lucas with his fire evac chairs and later we’ll be talking about weighing scales, always something that gets disabled people talking. Later also we are chatting to Jessie Hewitson, journalist, author, about her book on raising happy ADHD children, and she has an ADHD diagnosis herself. With me throughout the show, you’ve heard her voice already, it’s ÃÛÑ¿´«Ã½ journalist Hayley Clarke. Woo, woo, woo!

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hello. Thank you again for having me.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, thanks for being here. We had a plan but we had to throw it away because, as you’ll know, the news has moved forward a bit in the last few days in regards the government’s welfare bill. So, what do we know now? A new amendment has been tabled which if voted for could halt or postpone the bill. If the opposition parties and the Labour rebels vote against the bill the numbers are sufficient to defeat the bill. So, that’s all new in the last few days. The government vote on these welfare proposals is due on 1st July. A new amendment to the bill has been tabled, which could be enough to either halt or postpone the bill. And if the opposition parties and the Labour rebels vote against the bill the numbers are sufficient to defeat the bill. We’re recording this on Wednesday mid-morning, and this morning on the Today programme political editor Chris Mason said that cabinet ministers have been asked to do a ring-round to support back support. Here’s Chris Mason:

CHRIS-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s not working that ring-round, so after the cabinet meeting yesterday before the Prime Minister set off here to the Netherlands cabinet ministers were given names of people to ring up to arm twist, grab a cuppa with. What have we seen this then? We’ve seen a number of signatories to this so-called recent amendment grow. And speaking to people, both those who have signed it and those who are trying to persuade others not to sign it or to take their name away from it, there is an acknowledgement that the attempt to persuade those would-be rebels to about turn is simply not working. Last night we say Andy Burnham, the Mayor of Greater Manchester on Newsnight saying that when the parliamentary Labour party delivers its collective wisdom in such numbers it is invariably right and it is right on this. We saw Sadiq Khan, the Mayor of London, also saying he was opposed to the government’s measures. Now, they don’t have a vote in the House of Commons but they have sway. And those with a vote, as I say, they seem to be at the moment accumulating behind those who say this simply has to be paused or stopped or looked at again. North of 120 Labour MPs now signatories to this amendment.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Since Chris delivered that report the number of MPs who have put their names to that amendment is standing at around 130. Labour MPs have been told that they will have the whip taken away from them if they vote against the bill. And today Rachel Reeves has turned the screw again and said that this will effectively be a vote of no confidence in the Labour government, which will give everyone the jitters. But will it be enough jitters to make Labour rebels change their minds? We’ll see. We’ve still got more headlines. Hayley, you’ve been looking at the news for us this week. What have you come across?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, in my reporting more broadly on the proposed PIP cuts I think a lot of it, like you say, is so fast moving and changing all the time, and I think a lot of disabled people are quite scared and quite confused and quite angry about the lack of consultation, which I’m sure you’ve spoken a lot about on the podcast.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Aha.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s really interesting to see that new development. I know over the weekend the Financial Times was saying that the billion pounds that’s been promised to try and help disabled people to get back into the workplace they were saying that the billion pounds won’t start to come in until 2028, so that’s about 18 months after the cuts have happened, and that it won’t be the full one billion a year until 2029. So, lots of politicians, lots of Labour politicians clearly, and lots of disabled people and experts are wondering what is going to happen, what is the plan here. And I think a lot of it is really, complex and I find it difficult to follow and understand, so.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, absolutely because I hadn’t realised that that billion pounds wasn’t going to be spent until then. And in what ways is it going to be eked out? And the big question is, do we know any more than we did last week about what it’s going to be spent on?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, we definitely don’t. So, we heard about it on last week’s Q&A that you did with 5 Live and the secretary of state for work and pensions mentioned that the billion pounds is going to be spent on schemes to help disabled people back into work. But even a week later we have no details on what that scheme is actually going to look like. It sounds like it might be a little different to the failed schemes of the past, to be fair, but there’s nothing.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because there have been a few of those. I mean, the disability employment gap has been stubbornly at 30% for years.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. And this is the thing, I mean what I’ve heard from lots of disabled people, lots of young people, particularly people with mental health difficulties who are thinking they might be hit by the PIP cuts, not scoring the full points, they might be hit by Universal Credit cuts as well, they’re saying, where are the accessible jobs, where are these hybrid jobs or part-time jobs that they feel they could do and would match their accessibility needs. It feels like where are the details of how this would actually work in practice is what I’m hearing from a lot of people.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, they’re hoping that this support will focus a little bit on the mental health side of things and on employers.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. So, the Terminally Ill Adults Assisted Dying Bill passed its third reading last Friday in the House of Commons. It’s due to go to the House of Lords next. But now there’s lots of other interesting stuff coming out about that, isn’t there?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes. So, the Telegraph reports that Wes Streeting,Ìý the health secretary, has warned that the NHS can’t afford assisted dying. I think, similar to the welfare cuts, it seems to be an issue that’s really dividing the heart of the Labour government. And it’s quite interesting to see how the different politicians voted on the issue. I know they had a free vote.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a matter of conscience they call it, isn’t it?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, it’s thought that the developments could slow down the bill as it goes through parliament.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý If you’ve been kicking around TikTok in the last week or so you’ll have seen an exasperated video by Sarah Rennie, a wheelchair user who was struggling to get weighed. Here’s a clip:

SARAH-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I can’t believe this has just happened: the NHS has just referred me to a pet shop. As a disabled person medication, lots of lifting equipment, I’m often asked my accurate weight. Okay, I need to get weighed. Because I can’t stand or walk this means that I either need to have a hoist that’s got weighing scales or I need to be able to roll onto a scales in my wheelchair and subtract the weight of the wheelchair. Wheelchair service no longer offers a weighing facility. A very nice lady connected to my surgery suggested that I go on local radio and see if any factory owners could help me. I thought surely not. I’ve just had this response, ‘Advise patients to go to Pets at ÃÛÑ¿´«Ã½â€™. Do I look like a chipmunk?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Do I look like a chipmunk [laughs]. Other pet shops are available obviously; I don’t know if you can get weighed there but they are available. Hayley, this was your story, you picked this up, ran with it, reported on it. Tell me more about it.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. So, I spoke to Sarah and she said that initially when she got the email it was so ridiculous that she burst out laughing. But then actually she reflected on it and said it was really dehumanising and showed how hard it is to exist with accessibility needs and is, what she called, proof of medical inequality that many disabled people face. It led me to speak to another guy called Dave who he’s 30, he lives in Manchester, and he’s used a wheelchair since injuring his spine a decade ago. And he, similarly to Sarah, just wanted to find out his weight. So, he was on a fitness journey, and he tried ringing round his local hospitals, not as a patient or not with an appointment but just he wanted to weigh himself, in the same way that many people can just do in the local community.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, what did he do in the end?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He tried the hospitals, had no luck. He did go to Pets at ÃÛÑ¿´«Ã½ he told me, and he said he had to do a wheelie to get onto the scales, but that it was the wrong size and didn’t work. So, eventually…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, pet scales aren’t set up for wheelchair users!

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughing] believe it or not…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Interesting.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …they’re set up for animals, not humans.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Ah.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But he eventually took himself to his local scrapyard.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Why?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý He felt he’d run out of options. He’d tried places in the community to go, and he was doing 5ks in his wheelchair and was going past this scrapyard and thought I’m just going to try. He said he was really nervous to ring up because he knew there would be lots of young lads there, but actually he had a really positive experience. Although he says it was degrading to have to do it. He said he had to do a really difficult lift onto the scales because they were for scrap metal and that they had lots of debris on them, so he was concerned about that. But he was able to find out his accurate weight. But he now works for the Spinal Injuries Association supporting other people who have had spinal injuries, so he’s able to use the accessible scales there at his workplace. But he said people come in from all over the northwest to go there, so he wants to see accessible scales available in the community, say at people’s local doctors, hospitals etc.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. I mean, in hospitals there must be. Damon, my editor, has spent quite a lot of time in hospital last year and he said that there were sit-down scales all over his hospital. Could you just creep in and use one?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I think that’s the thing. So, one of the hospitals, one of the trusts I spoke to, the Manchester University NHS Foundation Trust said all patients who are referred to them and require accessible scales can access them as part of their care. But they added that Dave hadn’t been referred to them as a patient when he got in touch. I spoke to a doctor as well, Dr Hannah Barham-Brown, she’s a GP and disability expert, she was horrified to hear about Dave and Sarah’s experience but not entirely surprised. And she said that yes, there are a lot of accessible scales across the NHS, but we don’t know where they are, how many there are, and you can’t just pop in and use them.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s not rocket science, Hayley, is it just to put weighing scales in every GP practice? I mean, it can’t be that expensive really?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I spoke to NHS England, they said they expect NHS organisations to provide reasonable adjustments to patients.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Reasonable.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And again it’s talking about patients, so I then that’s the thing…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s a health thing.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Like Sarah was saying, it’s so important to know your accurate weight for many different reasons, so whether that’s to get the correct medication dosage, also other things that are maybe not scales but are similar issues, like cervical screenings.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Which actually there’s news on today because the NHS are going to start sending out cervical screening kits to people who haven’t come for their screening. That might have an impact on disabled women.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I remember reading an article a while ago about a young woman scientist who had developed a less painful way. I wonder if it’s going to be those kits. I’m interested in this.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý If you get one in the post you could do me a voice note while you do your own cervical screening. You can tell me what the kit looks like and how it works, or not; maybe you could just describe it in an email, that would be fine too.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I would be very interested, listeners, what kind of difference would getting one in the post make to you. Let me know, accessall@bbc.co.uk. Send me an email or a voice message 0030 123 9480. I was just thinking there about Lucas being stuck in the refuge area in his school and people having to go to scrapyards and pet shops to weigh themselves, and there’s a bit of a theme about disabled people ending up where they ought not to be. I mean, my example of that is when I’m getting assistance to a train, the train staff will often take me into staff areas and weird storage corridors that are kind of dark and gloomy, or just definitely not customer facing. Lots of us do experience it. We’ve got wheelchair users going through restaurant kitchens – there must be some sort of policy around not doing that – but to get into the restaurant when they can’t get in the front way. But anyway, tell me your weird places you’ve ended up on. We’re also on the socials, X and Instagram @ÃÛÑ¿´«Ã½AccessAll. Hayley, we’ll be back to chat about Glastonbury after this.

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

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Financial journalist and author, Jessie Hewitson, became somewhat of an autism authority, and that was born out of the experiences she had with one of her sons. Now Jessie is back with How to Raise a Happy ADHD Child, also coming out of her experiences parenting neurodivergent children. But she too has recently had an ADHD diagnosis, and she’s with me to tell me all about it. Hi, Jessie.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Hi, Emma.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Now, ADHD and neurodivergence it’s something that everybody’s talking about at the moment, there’s a lot of chat about that in the press, on social media. What’s going on, do you think?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I think it must feel to other people that everyone’s suddenly being diagnosed and that it’s everywhere. I think what’s happening is that we’re playing a catch-up process in terms of the identification of ADHD, so we’ve got people being identified at a young age, at a reasonable age I would say, but we’re also seeing people identified who weren’t identified when they were younger. A very typical scenario is exactly like mine, that your children are identified with ADHD, so you actually learn what ADHD really is, and then one parent, as it’s a highly hereditary condition, is likely to think oh hang on, that sounds exactly like me, and they get diagnosed. And then they tell all their friends who are like them about ADHD and so on.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Because they happen to actually want to hang out with other neurodivergent people in some cases, so actually they actually end up having friends who are like them and tell them about it as well.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What was your experience of getting your diagnosis at this stage in your life?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I actually have been also diagnosed as autistic, so I am both. After I wrote my autism book I did identify very strongly particularly with the autistic women I interviewed. And then it’s been eight years, and then in those eight years spent more and more time with autistic people, and often people would just assume I was autistic. And I would say to them, ‘Actually no, I’m not’. And some would say, ‘Oh okay, sorry, I assumed’ and other people would say, ‘Yes you are, you just don’t know it’ [laughs]. And so this happened more and more, and over time I suddenly thought yeah, I probably am. But then actually I decided I did want to know so I got my autism assessment and knew for certain that I was. And then with ADHD a similar process started happening in that I started writing this book, started interviewing people, I learnt about inattentive ADHD for the first time.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What’s that?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, we could call it female ADHD really because inattentive is what one in three people have. So, there’s three types of ADHD: hyperactivity/impulsivity, then obviously you’ve got inattentive ADHD, or you’ve got combined, which is both of those aforementioned ones. So, when you get a diagnosis of ADHD you get one of those categories. Now, the inattentive ADHD is often what girls are, and you’re not hyperactivity; in fact you’ve got a fidgety brain rather than a fidgety body, and it’s commonly associated with zoning out. So, for me that was a complete revelation because I’m so not hyperactive it’s embarrassing [laughs]. I’m a couch potato who is so not at the gym. In fact I’m on the sofa watching Channel 4 true crime documentaries, that’s the closest thing I really have to a hobby. So, it kind of blew my mind learning about inattentive ADHD because I realised for the first time hyperactivity, physical hyperactivity wasn’t a core component of ADHD. And also this zoning out that I’d really struggled with my whole life, I’d just assumed that I was a bad listener, that I wasn’t disciplined enough, that I was lazy in not being able to marshal my brain more successfully. And then actually I learnt it’s ADHD.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And how has life changed since you actually got those bits of paper with the autism and ADHD diagnosis?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I found out when I was 48, so I’m in a process of getting to know my brain. At first I took a long time, particularly with the ADHD, thinking am I really, has the consultant got it wrong.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Am I ADHD enough?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Am I ADHD enough, yeah exactly. Because I do have challenges, but when I was diagnosed the consultant actually my challenges were on the mild side.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What are the challenges? What kinds of things are challenging for you?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, with focus, like I have inconsistent focus. So, at work on a newspaper I was working at a high level in newsrooms and it’s played to my strengths because there were frequent deadlines, but I’d still leave things to the last minute. And then I had this ability to write 1,200 words in half anÌý hour.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Wow, that’s a lot of words in half an hour!

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, it is actually. I always thought oh, it’s just because I’ve been writing for 20 years so I’ve developed this ability to write very quickly. But I think there was always this awareness that it wasn’t the usual way of working. So, I struggled with not consistently being able to pay attention, which I now know is about my dopamine levels and feeling frustrated because I wasn’t always as productive as I wanted to be.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And can you do anything about that?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, I think I can. I now take Elvanse, which is a stimulant which makes me focus easier. I feel like I’m wrestling with my brain less.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It works for you. It doesn’t work for everybody. It’s medication, right?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. I mean, I don’t believe it’s the be all and end all, but I’ve tried it and it does work for me. But also I let myself off the hook now. I know consistent focus isn’t a realistic aspiration for myself. And I’ve figured out, I know this is so daft, but I’ve figured out I need to listen to music when I’m writing because that’s the way I can create dopamine. But when I was in the newsroom I didn’t used to do that, so I’m figuring out some of those tricks.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Brilliant, at this point it’s kind of a revelation. Now, you’ve got a diagnosis, two children have had a diagnosis.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But being diagnosed and getting kids diagnosed can be tricky, can be a long process. What would your best tips be for families who want to go down that road?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The first thing I’d say is go to the GP and agonise whether they are or aren’t later. Because I think there’s a lot of people like myself who spend years thinking, is my son ADHD, isn’t he. I had this constant back and forth in my head, oh he can spend 20 minutes drawing while sitting down, well surely that means he isn’t ADHD. It turns out he is totally ADHD, I just didn’t understand ADHD. So, I think particularly given waiting lists are so long, I would recommend going to the GP when you do think about it, and then leaving it to the doctors to decide whether your child is or isn’t ADHD.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, he can draw for 20 minutes, which made you think that he wasn’t. So, what brought you to the conclusion that he actually is? I mean, he told you himself when he was five, right?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I know.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What happened there?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, I feel a bit, I was going to say shamed, maybe that’s too strong, but it was definitely a lost opportunity. There was an assembly in neurodiversity in school and the SENCO, the special educational needs coordinator at the school had explained what ADHD is. And she obviously did a good job because my son came home and said, ‘Mum, I’ve got DHD’.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý DHD [laughs].

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý And initially I was like, what’s DHD, I didn’t know what he was talking about. And then I remembered he’d had a neurodiversity assembly. And my initial reaction to be honest, because he said, ‘Mum I’ve got DHD’ and then he left the room straightaway, was just to burst out laughing because he didn’t have the attention span to get the A out of ADHD.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý [Laughs]

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, I was highly amused by that. But then actually I stopped laughing because I thought, well what if he is, because there had always been signs that I’d put to the back of my head that he might be.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Your book’s called How to Raise a Happy ADHD Child. What makes an ADHD child unhappy? And what are the tricks? What I love about the book is there’s an insight into your parenting and the stuff between you and your husband how to parent; it’s very, very relatable for neurodivergent or non-neurodivergent children. But how do you go about raising a happy ADHD child who maybe wasn’t happy before?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. Well, I think early identification is extremely helpful for that process, because I think the sooner someone understands what they struggle with then you can help come up with solutions. So, I guess that’s my first thing is if you can work with your child to identify what are the challenges and come up with practical solutions. But also at the same time let your child off the hook for something that no matter the strategies you’re going to have in place they’re just not going to be able to do. So, for example my son did have difficulty not interrupting the teacher, so he suggested it actually if he could have a whiteboard to draw on while she was talking he thought that would be helpful. So, when he’s in school that’s something he does, and that’s very helpful.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah. What other tips?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý The other tips, I think to see yourself as a team. So, it’s you and your child versus the problem. A sentence that was told to me that I found very helpful is the problem is the problem, your child is not the problem. So, if I could have an example from my own family last night, we had a meltdown, I won’t go into details but it was extremely upsetting for all involved, and I really woke up with that sentence in my head because when I go back home I really want to say to my son, ‘That was horrible for you, I feel really sad about it, can we work out together how we can make that less likely to happen another time?’.

I think with school as well, school can be an incredibly difficult place for ADHD people. Interviewing ADHD adults it just seems like the people that did have teachers who thought their children were naughty or lazy, having a parent on their team when necessary to step in and say, ‘I’m sorry, your teacher’s just not right on this’ was invaluable. So, I think if there are issues with the school the ideal situation is to be the parent, the child and the school on one side and the problem on the other. But if that’s not possible the next best thing is for the parent and the child to be on one side and the problem and school to be on the other.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I mean, you talk in your book about bribery and screen time and stuff that we all parents deal with. I wonder if they’re helping to help you guys as a team work with the problem, how do you deal with judgy parents, you know, if you’re letting your kid have particular amounts of screen time because it genuinely regulates them etc?

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I think it’s just practice, trying to relegate whether it matters or not in your brain. So, I went to a parenting group and a father told me a really good story, which I find very helpful, in that his neurodivergent child, ADHD, had a massive swearing meltdown in a museum and he felt the judgement from the other parents, the security guard was looming into view and was about to take action. And he said he just had this very clear thought, and it involved a swear word – and I’m not sure if I’m allowed to swear on this podcast? I can do a PG version, if you like?

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah [laughs].

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, the PG version is, ‘Sod you! Because you are not going to be at home to pick up the pieces’ and I find this very helpful because really the parent just prioritised de-escalating and what his child needs. And what his child needed was to run out of steam I guess, and for his dad to be there and just protect his dignity, I guess, but also ask if he’s okay; not to go into it in the moment, not to do some performative telling off that often is expected of us as parents. And then later on, when his child was much calmer, in the evening, just to say, ‘Look, what did that feel like for you?’

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, because we’re told all the time, I think when I talk to autistic people about ADHD, interrupting a meltdown to try and sort it out is never going to work.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý No, but that’s what people often want you to do.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, so performative telling off – I love that phrase as well.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yes, resist performative telling off. But also I find sod you a helpful phrase in my head, because what matters in that moment is not strangers’ opinions, it’s…

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What you know.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý …what you know about your child, and reducing their shame long term.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, listen, this book is packed full of little nuggets of advice like this, tips, loads of science, loads of chat from other ADHD adults and young people. It’s a super read, and thank you so much Jessie Hewitson for coming in and telling me all about it.

JESSIE-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you, Emma. I’ve loved chatting to you.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, Hayley, that was a lot covered there. Jessie talked about shame near the end. You’re a person who has ADHD and you’re a former teacher as well, so I’m sure you were listening to all the stuff around parenting children with interest. I think shame was a big theme there just coming to the end of that interview there. Is that something that you can identify with?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Massively, massively. I think it’s maybe the number one thing that I struggle with, both as an ADHD trait and also as a result of being a late diagnosed woman, I think it’s both things. And as I was listening I was thinking back to when I was diagnosed and how empowering I found it, I jotted down in my notes liberating. The self-compassion I now have for myself when I do have a meltdown or when I do interrupt someone or say something I shouldn’t have said, and then feel loads of guilt and shame for it afterwards, actually I have so much more understanding for myself of that’s going to happen and that’s okay and that’s because my brain’s different. And also through doing ADHD coaching as well, just trying to laugh things off sometimes. Sometimes it doesn’t have to be super serious [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, a big deal.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Exactly. And you were a teacher for ages. I mean, Jessie talked a lot about children with ADHD and making sure that they know they’re not the problem, and also making sure that they carry as little shame and anxiety around it as possible.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Looking back, some of the children who were diagnosed with ADHD in my classrooms had fidget toys. Like I’ve got my fidget toy which is actually Access All themed, it’s like a lot of different pinks and purples.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý have you got it there?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’ve got it now.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Can I see?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, I’ll hand it over. It’s a Tangle.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, I do like these. We’ve got some of these at home. You get fingers, it’s kind of, oh god, how do you describe a Tangle?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s like a long swirly piece of plastic that you can just wrap around your fingers. I actually prefer a Pop-it, but I couldn’t find it this morning, and I think that was quite serendipitous because that is perfectly Access All branded to be the pinks and purples.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, that’s nice. Thank you for fitting in with our branding. I’ll hand it back to you.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý But yeah, the fidget toys when I look back now and the children who had ADHD who had fidget toys I would say to them, ‘Totally cool for you to have that fidget toy, but please don’t use the clicky one because then I can’t focus’. And looking back it’s so obvious. I mean, I’m very hyperactive, different to what Jessie was saying, so I’m combined ADHD, so hyperactive and inattentive, but heavier on the hyperactive I would say. And I think in school for me it was that de-escalation with children. Things that help all children, let’s all get up and have a dance break. They all had notepads on their desks like the mini whiteboard thing. And also when something does go wrong correcting the behaviour, making sure the child knows it’s about the behaviour and not about them; I think that comes back to that guilt and shame side of things that you were talking about.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Will you be taking the fidget toys to Glastonbury? Have you packed them? Because it’s coming up in the next few days and you are going, you lucky duck.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I am, I’m so excited. It’s going to be my sixth Glastonbury so I’m so excited. And I have packed my fidget toys. I’m worried about not having the Pop-it but I’m going to go and look for it [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay, well maybe we could get you a new Pop-it, definitely. So, you’re going to Glastonbury, taking your ADHD with you.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What would your top tips be for someone who’s neurodivergent and going to Glastonbury for the first time?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, yeah I’ve got my fidgets, so I’ve got my Tangle here and I’ve also got my Loop earplugs – other brands are available – but these help me when I get overwhelmed in a crowd. So, I can just put them in and they’re earplugs that they don’t block the sound, they muffle the background news a little bit, so that helps me with overwhelm. I struggle with sleep a lot, so my eye mask, my proper sleep earplugs and my pillow are coming with me. And that’s something where before I may have been a bit embarrassed to bring my own pillow because most people don’t, but actually now I’m like, I need my pillow.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What’s special about your pillow?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Oh, I just can’t be dealing with a blowup pillow for four, five nights. And I just love my pillow. I like to sleep on my side; I’m actually going to take two pillows – very extra [laughter].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý What else are you going to take?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý So, this isn’t something I’m going to take, but this is something that I’m going to do. Last year I got very overwhelmed one of the days, it was really hot, I actually got engaged at Glastonbury, which was amazing.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Congratulations, a little late.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you. So, it was a massive weekend, it was full of so much joy, but what I make sure I let myself do now is carve out that rest time. So, the day after that it was like, no, two days later actually, it was really, really hot and I was just getting overwhelmed so I was like, I’m going to try out one of the sensory tents. And I got to the sensory tent and I must have been super visibly overwhelmed because the people ushered me straight in and were like, there were, like, five people who arrived at the same time, but for me he was like, ‘Quick, in you go, in you go’ [laughs]. It was just really nice, a dark tent with giant beanbags or big comfy chairs, lava lamps, ear defenders, sensory toys and weighted blankets, and you could just take a bit of time away. I think there were three; they’re on the map at the festival.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Yeah, who knew there were sensory tents at Glastonbury? That’s quite a good development. And you bring your own extra tent?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I do [laughs]. So, this is something, and this comes back to your question about the fidget toy actually, is those things I do for myself that maybe before I would have felt embarrassed by, but now I feel proud to explain why I need it. And I think I’m quite confident as a person so I feel like if I do that then other people can hopefully advocate for what they need. So, me and my partner have a tent, but he has a lot more stamina than me so he can stay out later, whereas sometimes I just get to the stage where I’m like, I need my alone time, I need to go somewhere that I know has got my comfy hoodie, all my pillows, my quiet time, is really calm and just I can be in control of it. We have a little extra tent that it stays really nice and clean and is kind of my emergency backup space to just take myself away and make sure I get my sleep. And that makes me feel a lot calmer.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right. Top tip: take a little extra pop-up tent so you can have some alone time.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý I did have a couple of things I thought of that are really positives about ADHD and Glastonbury, and they are: I’ve been on Vinted for two months getting my outfits together, and I think really embracing your creativity and dopamine dressing. So, I’ve got so many sparkly bright outfits.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Tell me about your favourite outfit that you’re going to bring?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý It’s really hard to narrow it down. I’ve got a Charlie XCX costume that I’ve made [laughs].

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Really? What’s that like?

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Well, so there’s people making Bratz t-shirts online and they’re fine, but I wanted it to be nice so I bought – well I can’t reveal it now actually because it’s a surprise – but it’s a bright green crop top. I went on a Bratz generator, I made my own wording. It’s that kind of like extra creativity that I think is like that neurodivergent childlike joy and wonder that I’m masking usually.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Okay. Listen, I’ve loved hearing about the positives of ADHD at a festival. I think lots of people will identify with that. And we will be talking more about ADHD on the podcast over the next few weeks because we have an interview with comedian Robin Ince about his recent book, Normally Weird and Weirdly Normal on his experience of ADHD, so listen out for that.

ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Right, well we’ve come to the end of this episode, Hayley Clarke. Thank you for being here.

HAYLEY-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Thank you so much for having me. I’d best go and find my fidget toy for Glastonbury.

EMMA-ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý Please do, go find your Pop-it. If you haven’t done already, please listener, do subscribe to us on ÃÛÑ¿´«Ã½ Sounds. And get in touch with us about anything you’ve heard on this episode or anything at all accessall@bbc.co.uk. See you later, bye.

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