This is a Global Player original podcast. This is Thursday. We're recording on Thursday. We're in the studio, booking about some different ideas, been in contact with Henry Shelford from ADHD UK, who's told us he's got some big news to share with us, some big ADHD news.
But, mystery, we don't know what it is. No, no, he refused to tell us what the news is until we'd started recording. So we've cleared the decks. We've got a free morning, a free episode, to find out exactly what he's going to tell us.
And we'll find out in a moment. We are joined by Henry Shelford from ADHD UK. Hello, Henry, and you've got some big news for us. Yes, great to be here.
And yeah, it's genuinely exciting. So I've been speaking with NHS England. I'm always a bit fearful. Every other time I was talking to NHS England as part of town, there's always been some kind of terrible news.
And this wasn't. I think this is big news. So there's a new medical director of primary care, care for that, and she's recognised the challenge in ADHD in the NHS and has already put together a group of people to look into the situation and raise enough questions that she's formally announced today as we record this, launching a task force to review ADHD across the board of NHS England. So not just an individual part, across the entire board, and also bringing stakeholders from education, from other parts of government to come up with recommendations on how to change ADHD and how it's held within the NHS wholesale.
It's a really big deal. And actually, it's the first step. You feel like you want to get the thing you'll get excited about as an initiative, but actually a proper task force working out exactly what's happened across the board is absolutely the right first step. Can I ask Henry, first of all, let's go back.
What are they responding to? Why do we need to have this review? I mean, we've got wait times varying across this country, right? From 12 weeks for an adult, which is frankly pretty great, to 10 and a half years.
For children, it ranges from five weeks to five years. We've got areas of the country where GPs are refusing to prescribe ADHD medication because the annual review isn't happening and they don't feel they can prescribe safely. And we've got another area which is refusing to let GPs do referrals for ADHD and instead is triaging and only seeing people who are suicidal with themselves or others or a family court. And people are having their entire life trajectory altered by this.
You've got children not being able to get support in their schooling. We've got someone I know worked out they realized they had ADHD in their first year of university, which is very common, right? Your structure of school, you do okay, get to university or first job without structuring you like I am struggling. And it took three years for them to be seen.
They were seen four weeks before their final exams. Entire university experience and the grade they get impacted. And they then got asked the question, do you want to look at medication? They said yes.
And the person said, right, great, see you in two years. So the entire start of their career also blighted by not getting the support that we know is a huge impact. And at the same time, ADHD and the receipts of medication are 10% less likely to be long-term unemployed. And yet here's me having a chat with Lee Anderson where he's going ADHD is just bad parenting and ADHD people are getting their kids a diagnosis just so that they can beat the benefit cap.
And that was when he was part of the Conservative Party and he made those calls from his deputy chair for the party. So we've got these enormous battles. And I spoke to someone just this week, they've moved three times in London and that's meant they've been diagnosed three times. And it's such a waste of NHS resources.
But every time it's been at least a year wait where they found themselves without medication, without support and struggling. And the reason they called me was in the charity was like my landlord's just given me notice. I can't do this. And do you know, Henry, we have spoken to so many people making this podcast.
We're learning so much about ADHD. The stories we're hearing from people getting in touch. I think Katie and I have started to learn beyond their own experience just how devastating this wait time lack of medication can be for people. Having spoken to NHS England, how positive are you that they are going to ask the right questions and head in the right direction?
Well, I'm delighted they've invited me to the task force so I'm definitely asking them. That is a good sign, isn't it? You know, you're in the room. They are asking the people who genuinely can give them the correct answers.
I think the fact that it's a proper task force looking to work out and really understand the issues and the potential solutions. And Clever has previously done a full review of NHS primary care. It's really impressive work. And she talked to me about one of the things I asked was, what about the wait times?
And actually we were tipped off at NHS England to make a request of integrated care boards of their wait times. When we found that survey, we found that roughly 70% didn't know. You've got to bear in mind, right? These are the people commissioning the service.
How can you commission a service and not know how many people are waiting for it? Well, that's been the impression that I have got up until now. The sense has been that ADHD has not been taken seriously. And therefore, there was no will to engage with data at that level because they didn't believe it to exist at all.
And so that's what feels so significant about today is an acknowledgement that this is real, isn't it? Because I was asking basically how I want that data because we're about to go to a new public sector year and so that means we're going to go and ask all the wait questions again. And I was hoping not to have to do it because it took six months. It was enormously difficult.
There's a shotgun that's spotted. Are we saying here that NHS England, you know, it's easy for us to sort of say, oh, you know, the support's not there and the services, and it's right that we say that. But I think, sort of what you touched on there, KT, I know ADHD's not a new problem, but to some extent, it is something that the NHS has maybe not felt its hats to face before. So do you feel that for them, this is saying, this is a new issue for us and one that we're going to have to take seriously?
Well, look, KT was previously a GP, who actually really has some good understanding of ADHD. We are playing catch up because ADHD was only formally recognised by the NHS in the year 2000 for children and 2008 for adults. And we've been underdiagnosing, we've been underdiagnosing the whole time, we've been underdiagnosing boys, we've been even more underdiagnosing girls. And people ask the question, why are there so many middle-aged people coming forward saying, I've realised I've got ADHD because they have no chance of getting picked up.
I mean, no chance of getting picked up as a kid. But one of the things that we've had to be battling is that people saying, you know, it's an uptick. And the idea that it's just a little uptick that we need to deal with and then move on. It's not.
This is a fundamental change where we're beginning to identify the right people who have ADHD and that quantum where 2.6 million people and we'll be born every minute. And so there does need to be a proper fundamental change. And that's what this looks like. And if we're talking about the system getting over not being able to deal with the pressure of people going forward, we've then got the announcement from Matt Hancock, which he did just recently, where he said he's won the MP lottery to put an act to parliament.
And he previously said, putting forward a dyslexia screening bill so that all children in primary school are going to get screened for dyslexia. And that's obviously a good thing. And obviously we felt a bit sad because we're so missed. And he announced that actually he thinks it should be a neurodiversity screening bill that all primary school children should be screened for neurodiversity.
And I think that's a wonderful thing. But when we're looking at this review that NHS children are looking to do with this task force, which is fantastic. I mean, the quantum difference that would happen if we started to properly pick up children with ADHD, if people think systems are overwhelmed now, I mean. Yeah, that is my next question, Henry, is what are you hoping this review will establish?
And what is the fundamental change that you would hope to see afterwards? Look, a huge chunk of problems like with the waiting times, like that people can't get care in a timely manner and lives are being destroyed in that wait. But big ones are around wasting diagnosis that someone might get a diagnosis privately out of need, right? Otherwise they'll wait 10 and a half years to be part of the NHS, they'll have to go and get reassessed, which is a complete waste.
But then if they move area, you know, that person they talk to who'd moved three times in London and they can have three assessments. It's just such a waste of assessment resources. To get a good passporting system, right? You've got an ADHD diagnosis, your passport did across.
But then there's huge problems. Like we see a really big problem for teenage kids. So they're often saying, say you're diagnosed younger and there's a period where you go, I'm trying to work out on me and you want to try not having medication for a while. Oh, this is completely understandable at which point you get discharged.
And if you then, as many do go, actually, this medication does make a big difference. I do want to take it. They're like, right, yeah, great. So I'll see you back in the queue.
Yeah, there's no space for you to make a natural, gentle, slow human choice at your own pace. You've got to make it at the speed that the NHS currently dictates to you. Otherwise you'll slip off the waiting list and suddenly become an adult. Yeah, and actually that carryover between childhood and adulthood has huge problems and lots of people find themselves just dropped.
And I was speaking to a GP not so long ago and he was desperate to be asked. He said, like, often you don't see a kid and they're doing all right and the next minute I guess is Jonathan's from prison asking for their medical records. I mean, it's just so, you know, we know that ADHD often finds themselves falling out of education and into crime. We have too many on that path and because it's been just because of the failures of the NHS system it's just heartbreaking.
Do you know, I'll ask a wide question, Henry. Talking about your role in ADHD UK and the journey, I suppose, that we've been on with ADHD suddenly becoming in the headlines and it does feel like it's suddenly becoming in the headlines in the past few years. And now at this stage, do you think that this task force could be a pivotal moment for the treatment of ADHD? Absolutely.
I think it could be, right? We've all seen task forces that have absolutely nothing and reports that are never published. But I don't think that's going to happen. I think the fact that it isn't just a sort of group of insiders that they're looking to bring in people, that means that things will get published and it means that the questions from different angles will be asked.
And honestly, having spent a good time speaking to Claire, like she really means business. And I honestly came out of it thinking, and having read her previous report, coming out really, really positive. And I think this is, it has the potential to be one of the moments we build and work to, that all the work you've been doing, raising, talking about ADHD, that we've been doing, like making ADHD an issue to blame us for increases in benefits and people getting support there and was completely forgetting that maybe they're there because they're not able to get an ADHD diagnosis and get support and help and because they've got to wait five years, six years, seven years. And we can't let ourselves be getting a diagnosis and support is the solution to getting people help and getting targeted as a problem.
It's just awful. But the good news is, Henry, it sounds like you have real confidence in the team who are going to be running this review and heading up to task force. It sounds like you really, really feel like this is the moment and we can absolutely believe that things are going to change. I definitely think this is the moment.
Getting things to change is part of the battle we continue to fight. But I think it can be really too easy, particularly sitting in this seat to just constantly complain and fight. And it is a fight every single day. But I think it's important to celebrate moments of success that we feel like things are really pushing forward.
And I'm saying this in the face of the medication crisis and the face of people without medication not getting it filled with huge problems with thousands and thousands on waiting lists and desperate parents and children. This is tough at this particular moment. This particular thing has the potential to mark a massive change. And I think celebrating it is the right thing to do.
There's a note of caution in your voice, understandably. Katie and I are a journalist and we have interviewed Catholic politicians and representatives of bodies who said that there are task forces and there are plans to do such and such. I think what you're saying is one, it's brilliant that we know you and we know that your organisation is battling to help people with ADHD and you're part of that. But I think also there is responsibility probably for us with this podcast people out there campaigning about ADHD charities to make sure that this task force does something.
To make sure that we're keeping this in headlines to make sure that we're saying okay, what's happening? Do you think that's the point? Do you think that we need to make sure that we don't let this top out the headlines? Absolutely.
And there's a really fantastic example happening right now. It's the post office, right? How much reporting did the post office task force and investigation was getting before the show? Oh, well, but you see that's where I think society was to blame.
You know, there was Nick Wallace was telling that story as a journalist in a local radio bulletin for years before anyone took him seriously and he wrote a book and he did a panorama and still there wasn't much of a story. What was so interesting about that was the need for a script writer to do a piece of drama about it for it actually to capture people's attention. And I think, you know, sometimes with something like that when it comes to campaigning we as campaigners need to remember the importance of storytelling actually, don't we? And we've seen it with this podcast.
We've seen it in a chat that we had with you. It's been one of our to the fire ultimately and in order to do that how do we do that? Well, it's about capturing people's hearts, isn't it? And making them pay attention.
And you are doing that so brilliantly in what you do. One of the questions I was going to ask actually on that then is we're talking about the neurodiversity bill and screening all primary children for neurodivergence and we hope that that happens. Maybe one of the important things is for you to explain why that's so necessary. What difference that can make if we can catch children at that age?
Because you get to know who you are, right? With the metaphor we use it's like before a diagnosis it's like you're in a maze and the lights are off. You're banging into things into people, into others my life would be different if I'd known. You often get caught in a trap because I have a wonderful wife and wonderful children and I wouldn't change that for the world.
And to people often when I was like would you like it to be different? They actually answer a different question which is are you happy? And the reality is like man, this could have been a lot less hard. Yeah.
Cool mate. Sorry, I need a minute. I know exactly what you mean. I was diagnosed when I was 37 and I got a letter from my dad to the school when I was seven saying we need some support and the school are responding as best they can but the SEM provision isn't there.
And I think to myself what would it have been like if they'd said we can help this seven year old and we can, like you said give him the light to find his way through the maze. Yeah, you're absolutely right I am happy, my life is good and I'm doing well but bloody hell how different could it have been if I'd known another seven? Yeah, it's such a good point and I think that's why we've got to keep telling people about this and we've got to keep saying this is so devastating for people's lives it can be so devastating for people's lives but if we can get the support to the people who need it there can be a real positive impact. Yeah, and we talked about this before how many other elements of people's lives that are being treated with the wrong drugs let's take anxiety for instance there are a hell of a lot of people because he was wrongly diagnosed with anxiety and of course you know people say oh adhd is being overdiagnosed at the moment everybody's got adhd actually how many people how many people are on antidepressants who right now could be on different drugs and feel better and feel better feel understood feel treated and have the tools to get out there and live their lives to the full because right now all they're dealing with is their anxiety and they are being mistreated and that frustrates me too that element of we are failing to understand how much adhd is at the center of so many things and until we look at that and acknowledge that we can't even begin to understand how much it affects us as a society and i absolutely agree but the story of this diagnosis and the treatment of the anxiety depression and not treating the underlying adhd is just extraordinarily common and uh it's a huge issue the fact that it's not picked up when people are coming forward saying i need help if we could change that i would help an enormous number of people we could do it all day we probably need to start to bring this to a close but i just wanted to know have you got any sense of the time scale for this task force how long it'll take when it starts i don't know i'm privileged to have a pre-release um conversation so i'll be learning the exact details over the next few weeks um i know that they're firming up those exact details but you know this is being led by someone who's done this before they're bringing in a wide variety of people so it feels it's going it's been done in the right direction it's one of those difficult ones where yeah we want it done immediately also like we've got ADHD so like you know that's a thing um but you also you want it to be long enough that it really finds out and what needs to happen is you need to make sure that you've corralled the right information so that people are persuaded and you can do these things through lights and then they're not persuaded and you can do these things too long right like yeah you've got very very good data but like it's now five years old so um i don't know how long you just i don't know how long you just terribly but this just needs to be the right amount of time but we don't quite know what that is yeah but the good news is is that today this is where we are amazing news and we are so grateful to you for coming and telling us about it we feel so privileged to be sitting here with one of the very people who are going to be sitting on that task force i'm excited to be here i'm excited for this and it is worth remembering right this is nhs england which until recently and only sort of does now didn't even have a person responsible for adhd in the entire organization and so we're going from no one to formal task force to look at what to do it's a huge change and absolutely oh amazing amazing we will be checking with you to see how the task force is going and we always appreciate your time thanks for joining us well thank you for everything you do thank you for inviting me to be here what's your reaction to that well my god i have to say jubilation sam let's just can we start there i am thrilled as henry says it's a moment and i you know you and i have been talking about some of the attitudes of some of the stories of the papers amongst our friends amongst members of our family all these different things this for me feels like the first time the nhs has taken adhd seriously and it feels like the powers that be are stepping into the room and asking the right people the right questions henry's going to be on that task force sam i have confidence that that task force is actually passionate and caring about what it's hoping to achieve yeah i agree and you know i know you like to i'm not at all but i said to henry we are journalists we have had stories come up big you know triumphant stories about new task force and plans and you think okay but what's going to happen where is this actually going to go so there's always a note of portion i think rightly of saying okay what does this actually mean what practically is it going to achieve but i think you're absolutely right the fact it's even happening you know you talked four or five years ago the fact that this is even happening the fact that henry's involved in fact honestly you and i and other people can keep an eye on it and see what's going on and that's really really positive yeah and that is that is our next step isn't it we just need to keep looking at it shining a light on it henry is obviously in the room he will know what questions are being asked and what data is being used this is fundamental shift in how they look at adhd and you know what kind of change can that bring when they ask the correct questions they can maybe start to come up with some of the solutions to the problems that people have been encountering in the past the waiting list of difficulties in getting their meds simple things like attitudes of employers all these different elements to what having adhd means and different challenges that we face and it feels like an extraordinary thing it really does i'm taking adhd seriously you can listen to your role about adhd for free on global player download it from the app store or go to globalplayer.com this is a global player original podcast