This is a Global Player Original Podcast. A Government Commission report looking at the state of ADHD services in England has just landed and the numbers tell a stark story. From long waits to huge backlogs and the two-tier system emerging, the new Task Force report lays bare what many in the ADHD community have already been dissecting. I'm Sam Pittis and I'm Katie Breathwick.
Welcome to You're Wrong About ADHD. With us today is Professor Anita Sapper, one of the UK's foremost experts in child and adolescent psychiatry and chair of the Independent ADHD Task Force. She's going to help us unpack what the report has found, why it matters and what might come next. We'll be looking at the data, the lived experience and the recommendations for reform.
All of that in just a moment. Anita, thank you so much for joining us. No problem at all. Now the report talks about ADHD being treated as a common condition, which I think for Katie and I was a re-welcome thing to read, but that is a massive cultural change.
Can you tell us a bit more about what the report recommends to make that work? Yes, so I mean, basically there's lots of things that we have learned about ADHD. I'm a researcher, a scientist as well as a clinician. There's been so much research in the last 20 years, so we used to think that ADHD was rare and the affected boys, it was something restricted to childhood.
We now know that many people, the majority, it may well be a lifelong condition and it affects women as well, many who were missed or misdiagnosed. In terms of our report, there are four main strands of first is ADHD isn't just health, so there are impacts and necessary involvements of education, the workplace. We've got an over-representation of people in the criminal justice sector when ADHD has been missed. This is really across sectors because with ADHD with the right support, can and do thrive when it's provided promptly.
That's the first thing, cross-sector transformation and that's really from government all the way down to locality. The second is we basically need upstream, early interventions and prevention of complications, also downstream where you actually have to also manage ADHD. The fourth is thinking about some of these other sectors. If we think about upstream prevention and early intervention, I'm going to use the analogy that a lot of the complications of ADHD may not just always just be ADHD itself, but the risks if it's not properly supported can lead to and that's really taking, we take people through that in the task force report.
That's why prevention of these secondary problems and early intervention is so important. It's a bit like the equivalent of if you've got high blood pressure, you want to get in there early before somebody gets a stroke, it becomes much more complicated, much more difficult of course for the person involved and also much more expensive. We really want that to be emphasized. Thinking about prevention early intervention, ADHD is basically arises early in development, but it might not always be picked up then, particularly if people can maybe mask or they're scaffolded at home or at school.
When we talk about preschool years, we know from research that previous follow-up of schemes such as the short start where there were interventions provided to support families, very early, long-term follow-ups have shown that these children, when they grow up into adolescence, they have better mental health and better educational social outcomes, less special educational needs. So what we've recommended is that preschool support, but one also that is also ADHD focused. So for example, some of the parenting support packages which have really got a lot of evidence around them, they can help with issues such as behavior or relationships, but there is also some, there is an ADHD specific package as well that we've been evaluating. There's others there.
So we think it's really important that that support is provided to families early when it's apparent those challenges are arising early and that, and to remember that ADHD and neurodivergence can run in families, so you may be talking about two generations, parent and child, so I'm sibling, so that preschool is really important. Then of course, once children enter schools, this can be a common time for challenges or differences to be picked up. And we've highlighted that you don't actually need a diagnosis to provide any of this support, so you don't need people like me right in the first stages. So what we highlight is important to provide support around needs.
You don't need a diagnosis always. But once you get to school age, they'll be of course very severely affected, they may need fast tracking. So we've highlighted that ADHD services also need a very strong links with school, whether it's through consultation years or not actually having a base there, it will depend area by area, but also outreach to schools when we've highlighted three things that are already available in England, so it could be built on. So the mental health support teams, and one of the unfortunate issues around ADHD, and I mean actually also for other conditions is that we have a siloed approach, not only to budgets across sectors, but also silos across diagnosis, and a bit of the psychiatrist is 86, and this has really increased.
So it's really important these mental health support teams are inclusive of children who are in your divergent, including ADHD, so you can't pass a letter, say well this person's got anxiety, so we're not going to deal with ADHD, so to treat children and adults actually as whole people rather than by just presumed diagnosis. So the mental health support teams are there, so that's something that could be built on. Can I just ask you a bit more about those the early years? No, because the report very, very importantly highlights the need for supporting early years going to school from your experience, the task force research.
Can you explain to people listening to this a bit more about what the current picture is in schools, and actually some of the blind spots I suppose you might call them? So at the moment, I mean it's not true of everywhere, so like those huge variations people will be aware. So we know that in some areas we've got situations where children and families are waiting for a diagnosis before any support can be given, and actually we need diagnoses to help for people like me, clinicians who are maybe making decisions about and you want to use research, like you don't want to use medication inappropriately, then those decisions become very important. But within other sectors, that's either those clinical settings, you don't need that to start providing support.
So I think that's the first thing is having to wait for a diagnosis. So we mentioned our report trying to change whole school systems because ADHD is common and there are other types of neurodivergence. So when five children will be neurodivergent, so having school environments that are enablers rather than post barriers, building on people's strengths, because it isn't just challenges, people will obviously have strengths and interests and being able to build on those being flexible. And the details of that, a lot of the educational recommendations are picked up by, it doesn't publish yet the Department for Education, Neurodivergence Task Force Group.
So the chair of that group sat on our task force and I sat on that group and it was there independent, but the direction of travel was very much very similar, needs-based rather than diagnosis. So that's the situation where people can't get help because they're waiting for a diagnosis. That feels like such a huge thing to say out loud. That's next.
And we first started making this podcast. It was about persuading people that ADHD was even real. The fact that you're saying, you know, on behalf of the government, you're making a recommendation, not only is ADHD common, but actually you shouldn't need to have a diagnosis before you can start treating it. It's important to say at this juncture that there are costs to society if you don't.
Oh, no, you've put that figure up, £17 billion. And how are those costs incurred? How do we as a society pay if we fail ADHD? So I suppose there's two things, just to go back to your earlier point, of course, there will be some children who need fast tracking.
So just to highlight, there will be some people who need to come and see me very quickly. So in terms of costs, I mean, these are actually, they will cost will be higher because they're based on old data, old figures from Scandinavia. And so in Sweden, people looked at people with ADHD and their siblings. So you're sort of accounting for family.
And the costs come up in families, parents having to stop work or cut back their work to manage their, you know, help their child or because school can't manage. So they're being sent home. We know children with ADHD are more often excluded or finding it very difficult to manage in school. You've got the school costs because they're needing extra support in schools and that's not always available.
There are huge costs for the criminal justice system. So unfortunately, a large proportion of people don't get picked up and end up in the criminal justice sector and early. So not just in the youth sector, but also figures are around one in four will end up in prison. And, you know, we have a condition that we can actually have effective interventions for.
We don't have effective interventions for everything, but we do for ADHD. These costs in, we know that people with ADHD are more likely not to be in education and employment, which of course is independent of government. But, you know, this is why we're making recommendations. We know that that is an issue because it's much harder to thrive in school exams and not really was geared up in our current way of assessing people isn't always neurodivergent friendly and getting work.
And again, there's a task force commissioned by the Department of Work of Pensions, which is an academic panel looking at work. So there's all those costs from work and employment costs to the whole family. So there are many costs of not managing and supporting ADHD, which as I said, with timely support, we do actually have the evidence and evidence that people can do thrive. The report very categorically says that ADHD is not being over diagnosed.
We know as you have highlighted, there are lots of people on waiting lists. You've talked about young people and support in early years. What does the task force recommend for tackling the backlog that the NHS is facing of people on waiting lists currently, whether it's adults or teenagers waiting beyond use on this in terms of their school careers? Well, I think the first thing to recognise is for a sort of bear in mind we're catching up and that, you know, it isn't just the UK and the underdiagnosis applies to England.
It isn't across every single, you know, higher income country. So we're playing catch-ups. So we've got a lot of adults who were never picked up in childhood and maybe have been misdiagnosed, maybe misdiagnosed, maybe have been misdiagnosed as having depression and anxiety or something else or have not really been enabled to thrive in their lives because they now recognise it, that they may have ADHD because there's much more awareness about it. So we highlight a number of different ways of dealing with it.
And as I said to the schools-based children, we think that the particular, I'm going to highlight this age group. I think the 12 to 25 is a very important group because that's a peak age of transition, social transition, education to work, transition. It's a peak time of mental health problem on set. So we have quite a lot of models in other parts of the world where for this age group, including people with young people with ADHD, rather than having this hard break at 18, having a service that spans across it, which is need-spacous.
Canada is a particularly well-established system. These are walk-in centres. They're youth-friendly. They're co-developed with young people.
They're cross-diagnostic boundaries because they're need-spacous. There is psychiatry there, but it basically brings together mental health, physical health, including sexual health, employment, careers, education, et cetera, in a one-stop shop. And those systems have been used so we highlight that for this age group. We think that there needs to be a much bigger role of primary care, but of course, primary care has to take on so much in terms of chronic health issues that we recognise that.
We had a lot of discussions with GPs, including GPs on our task force, but it's important also to recognise that GPs need to be protected in terms of training, remuneration, but ADHD is very variable. So where it's quite straightforward, there's a good, easy response to intervention. A lot of that could be provided by the primary care team. Primary care, not always being the GP, it could include nurses, pharmacists, but provided the supported by people like myself who are specialists.
The more complex will always have to be seen by specialists. We talk about task sharing and task shifting, again, which has worked in a number of countries that would need to be evaluated and basically stepped care, where you start with interventions like psychoeducation, understanding more about possible ADHD, what sort of strategies they can use day to day, how they can manage lifestyle, their workplace or other types of settings, moving up the scale to more rigorous assessment and by a trained clinician. So we do highlight quite a few ways of trying to deal with it, but we also recognised in our report that there has been a history of neglect of ADHD and not really keeping up with our services, not modernising in line with what we know about research. Professor, can I ask all of this sounds amazing, I have to say, lots of the recommendations.
I had fireworks going off my head when I was reading the report initially. It was such a relief to read so much of what was being acknowledged and recognised and the things that were being suggested. Can you give us some sort of steer on how likely it is that these recommendations will be taken up? We've got lots of lovely phrases from NHS England and we've got a statement from the government ministers and they all seem very positive, but it's obviously going to cost, we know that.
We're talking about massive cultural change. We are talking about massive cultural change. Have they given you any kind of timeline or commitment on whether or not these things will be followed up? I should say first that obviously, number one, it was published, that's a good sign and the costs are being born anyway, as I highlighted all those costs there, there anyway, and I would hope that any government would have the will to put those costs into support to appropriately so people can engage fully in and participate in society.
There's also some really positive things that could be built on. They're sort of sure start will stop, but there's something called the best, I can never remember, it's best start, it's an early family support. That would be really great, that would be easy to build on. The mental health support teams, these are not hugely expensive because they're already being rolled out, so build on them.
And we have, again, the integrated use systems, we've got a lot of the components there, but they're all separated, careers advice, it's not, I've never met a career advisor and I'm a psychiatrist of young people, young people. So it's a lot of it, it's about join up and integration and that may have to be done locally because it's going to vary by areas, some areas, voluntary and community groups are really doing great work around post diagnostic support and psychoeducation. So it's harnessing all those things, but of course there has to be a will first to recognise ADHD is important to recognise the quality of research and evidence, which I think nobody would dispute this with high blood pressure or high lipid levels, but there is a huge wealth of research, not that everyone needs medication, but for those who require medication, the effect size is higher than for anti-hypertensive or for statins, lipid lowering agents. So I would hope there's a will, but it does require a recognition of the quality of that research and the 10 year NHS England plan.
I think it's fantastic opportunities, the neighbourhood hubs, been ideal place to put a lot of the tussle's recommendations into place, the NHS app, quite a lot of things about transportability of information for patients and for clinicians, particularly when people move areas and quality standards. This is all to, I would have thought government benefit as well as to people living with ADHD. So clearly I wouldn't have done it if I wasn't hopeful that I'm not in charge. So I don't care.
So we remain hopeful too. It's a detailed road map. So I think even local areas look at it and say, right, we've got the evidence behind it, we can try it. And it's such a good point you make that the costs are already being born.
It's about moving the costs from one place to another and actually not reacting, but preempting, as you were saying, and making things easier for people to make connections and find the services and do all of those things that are so important. Indeed, and it is stark when you put that figure on top of it. You've talked already about a greater role for GPs and the idea that we talk about perhaps people like you and IKT who get to a certain age on a waiting list actually are the things that you can access from your nurse or from your local GP surgery. The role of college of GPs have welcomed the report and they say they are drawing up more education resources for GPs, but they say there must be time and budget to provide this training, which makes sense.
But with all of this, with ADHD, it is about time. It's about being seen. It's about being given the support you need before it's too late. And I think one of the things that I do think about this report is that you're looking at saying, you know, we need to train up GPs.
There's a 10-year action plan. In the short term, there are going to be a lot of people who miss out on it. Well, I think the first thing is, yeah, it was great to see the response from the role of college of GPs. I should say that I'm very sympathetic to GPs.
My other half was a GP. I recognize they have a big workload, so we talked to GPs of course that time. And I think there were two types of, some of it could be routine work, but they obviously need time and remuneration for that, like the annual health checks that prescribing. And then other GPs are really interesting, ADHD, and there should be the opportunity to become, train and become sort of specialist sector.
But it's also to recognize that it isn't just GPs as a primary care team. So we do highlight the role of other staff as well. And as I said, at the moment, there is catch up to play. I think it's important to think of the primary care team as a whole team, not just on solitary GP.
And I think for those of us who've worked a long time, I mean, as I've as I said, I've been as a characteristic as 1986. We used to be much less siloed, team by team, diagnosis by diagnosis than we used to. And as I said, I think a lot of it is about integrating systems. But then systems at every level also need to recognize that's work, you know, that actually the integration and talking to your colleagues and talking to your neighboring GPs and schools is actually work.
We did actually used to do that. So I think it isn't huge to have got, I think the only big differences we know much more about ADHD, just like we do about other conditions. So of course, that it's not going to stay the same as it was in back in 1990, nor should it, but it isn't impossible. And we do highlight some ways that we think are achievable.
Indeed, I mean, it is broadly positive. And I certainly know we have talked before about the need for cultural change and how it is, it feels like moving a mountain, but it's about making steps. Something else I wanted to highlight was talking about current services. The report says there needs to be better regulation of ADHD service providers.
Can you tell us a bit more about that and about the task force concerned about the current picture? There was several types of issues coming from different quarters. So the first thing is the kind of post-code lottery that is huge variations depending on where you live and also very difficult to access data. How long are people waiting?
How many people in each area are given a diagnosis? How many people on medication? So we really highlighted that, you know, the number one, the data quality needs improvement and do understand NHS England has started that process. And number two, that, I mean, there are published quality standards, but is there a way of implementing them across the board?
And there are two reasons. One is that whatever provider is, whether it's NHS or independent, that you know there's certain quality standards going to be met. So we highlight the importance of actually NHS England, DHS and colleagues really highlighting what those quality standards are, regardless of who the provider is. The other thing that was raised by people who were more skeptical about ADHD is people doubting and a lot of what ADHD said is that the authenticity of their diagnosis being questioned and then becoming really difficult to them get care, sort of like they moved or moved service that it was became really difficult.
So we don't have that questioning of the authenticity about many other types of diagnosis. So I think it's really important for people with ADHD to know that certain quality standards are being met and for people who are doubting the authenticity, because there are people out there who are doubters, we encountered quite a few of them, that no, this is actually done using, you know, good quality research and, you know, with good standards and across providers. Would you see in the long run a move away from the sort of shared care pathway? I mean, I just, I may be misunderstanding this, but they would still need to be, for those as you said, those people who have a greater need, they would still see someone like you.
I was just thinking as you were talking, one of the struggles I know anecdotally is that for example, someone goes to see a private provider and they get a diagnosis and then they go back to the GP and it's so sorry we can't share care because we're not sure about that provider and what they do. Would you see a move away from that system or would we still be facing a situation where when there's a private provider involved, the NHS can't meet up with it? So I think the question of public versus private provision is obviously a political decision. So I won't get into that because that's my, you know, I'm a clinician and researcher.
But I think what we want is join up regardless of who the provider is, is join up across systems that your GP should have access to what's happened in the specialist sector vice versa. And basically the information should follow the patient, if you're the person who's accessing services, regardless of who's seeing them if they're an approved provider. And that came out over and over again. And again, I think there's huge opportunities with a 10 year plan.
I think we highlight that in the report. It came out when we've done the first class to go back in like with the NHS app where those data can be there and they're transportable. I mean, that will also make it much easier for clinicians because they have to keep, you know, it's very burdensome, of course, most burdensome for the person affected, but it's also burdensome if you've got to duplicate assessments and it's extremely inefficient. So we do highlight quite a number of these ways forward that would improve efficiency because currently it's not efficient.
No, no, and more than half a million people are waitingist, as you said. And so we need to get through the backlog. I think for now it's going to be interesting to see what happens next and how much we move forward. But can we take this opportunity to say thank you for all of the work that you've done on behalf of the Task Force?
You know, thank you for saying so much about what we've been saying in this podcast studio for years and making it official. I mean, that's the powerful thing about recommendations to a government, isn't it? You as a scientist are going, yes, this is real. Yes, we need to make change.
And you know, it's wonderful to sit here and know that that has happened because it feels like we're turning a corner, finally. So thank you. And thank you so much for joining us on the podcast today. It's been an absolute pleasure and for filling us in on all the recommendations.
Thank you. And thanks to all the ADHC TASF1 team and colleagues, there's so many people who contributed. Wow, that was a sobering, but actually also I felt quite an uplifting conversation. The Task Force report making clear that millions of people with ADHC are being that now, not because we don't know what to do, but basically because the system isn't keeping up.
Huge thanks to Professor Anita Thappa for guiding us through the data. But you know, we obviously ask the questions because we want to know whether this is actually going to happen. And look, there is a long-term plan for the NHS in England. There are recommendations which are going to take time to implement.
If they get implemented, there is calls for more GP involvement. As we discussed with Professor Thappa, they're going to take a lot more training and funding for GPs. This isn't stuff that's going to happen overnight. And so initially there's a sense of, OK, what about all the people on the waiting list now?
But what I thought was really positive was that she said actually, if we look at how we can start offering services before diagnosis, then actually that stuff can start happening sooner rather than later. Yeah, and there was the other point she made about the costs already being born. We as a society are already paying £17 billion because of undiagnosed ADHD. And these things, if we shift from reaction to early intervention, we'll save us money in the long run.
So it's not about us having to find loads of extra cash to pay for these ADHD is just suddenly popped up. It's not that. It's been there. But it's the reason, you know, what the figures she used one in four in the criminal justice system have undiagnosed ADHD.
There are reasons why we need to take this more seriously. And she mentioned that she still comes across people who are skeptical of ADHD. It's not on anymore. We are beyond that now.
And we need to start having a different kind of conversation. Yeah. And in one sense, you could look at it perhaps more positively than I am and say we've been calling for cultural change. Maybe this is the cultural change.
And then I'm suddenly saying, yeah, but how quickly is it going to happen? And you know, we need to accept these things to do take time, but we're still here to keep hanging that drum, keep having this conversation and keep making sure this stuff happens. Yeah, you can find the full Task Force report on the NHS England website. And if today's episode resonated with you, do please raise it for us.
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