Y Pwyllgor Iechyd a Gofal Cymdeithasol

Health and Social Care Committee

08/06/2022

Aelodau'r Pwyllgor a oedd yn bresennol

Committee Members in Attendance

Gareth Davies MS
Jack Sargeant MS
Joyce Watson MS
Mike Hedges MS
Rhun ap Iorwerth MS
Russell George MS Cadeirydd y Pwyllgor
Committee Chair

Y rhai eraill a oedd yn bresennol

Others in Attendance

Professor Amanda Kirby ADHD Foundation
ADHD Foundation
Professor Anita Thapar Prifysgol Caerdydd
Cardiff University

Swyddogion y Senedd a oedd yn bresennol

Senedd Officials in Attendance

Claire Morris Ail Glerc
Second Clerk
Helen Finlayson Clerc
Clerk
Lowri Jones Dirprwy Glerc
Deputy Clerk
Philippa Watkins Ymchwilydd
Researcher

Cofnodir y trafodion yn yr iaith y llefarwyd hwy ynddi yn y pwyllgor. Yn ogystal, cynhwysir trawsgrifiad o’r cyfieithu ar y pryd. Lle mae cyfranwyr wedi darparu cywiriadau i’w tystiolaeth, nodir y rheini yn y trawsgrifiad.

The proceedings are reported in the language in which they were spoken in the committee. In addition, a transcription of the simultaneous interpretation is included. Where contributors have supplied corrections to their evidence, these are noted in the transcript.

Cyfarfu’r pwyllgor drwy gynhadledd fideo.

Dechreuodd y cyfarfod am 11:16.

The committee met by video-conference.

The meeting began at 11:16. 

1. Cyflwyniad, ymddiheuriadau, dirprwyon a datgan buddiannau
1. Introductions, apologies, substitutions and declarations of interest

Croeso, bawb. Bore da. Good morning. Welcome to the Health and Social Care Committee this morning. If I move to item 1, we do have apologies from Joyce Watson this morning, who is unable to be with us. We don't have any substitutes this morning. If there are any declarations of interest, please do say now. There are some other housekeeping issues. This committee this morning is in remote format, so Members and witnesses are participating virtually this morning. All Standing Orders remain in place, and our meeting is, of course, bilingual and Members and participants can speak in either Welsh or English. If there are any issues with my connection this morning, Mike Hedges, it has been previously agreed, will stand in as temporary Chair. So, I think that's all the housekeeping rules done. 

2. Anghydraddoldebau iechyd meddwl: sesiwn dystiolaeth gydag academyddion
2. Mental health inequalities: evidence session with academics

And with that, I'd like to welcome our witnesses this morning, as I move to item 2. This is our fourth meeting that has been dedicated to taking oral evidence from stakeholders to inform our inquiry on mental health inequalities. I would ask the witnesses if they could introduce themselves just for the record. Shall I come to you first, Professor Anita?

Good morning. Bore da. My name is Anita Thapar. I'm professor of child and adolescent psychiatry at Cardiff University. I'm a researcher and clinician, and my area of expertise is in young people's mental health and neurodiversity. 

Thank you for being with us this morning, and thank you for your introduction. Professor Amanda Kirby.

Bore da. I'm Amanda Kirby. I'm the chair of the ADHD Foundation and I'm emeritus professor at the University of South Wales. I run a neurodevelopmental service there and a research team. Also, my area of interest is in neurodiversity, particularly attention deficit hyperactivity disorder and other co-occurring conditions. 

Thank you as well for your introduction. If I can ask first of all about how widespread neurodivergence is in the population. I'm particularly just asking for your views on whether there is a greater number of people with this condition who perhaps are undiagnosed, and to what extent that is prevalent in the population. And perhaps to what extent many may have been wrongly diagnosed or underdiagnosed. Perhaps if you could talk to those points, that would be helpful as a bit of scene setting for the opening of this session. Who would like to go first, to dive in first on that one? There we are. Thank you. Professor Thapar. 

I'm happy to start with the research, and then Amanda may want to follow up with the practical issues. Essentially, neurodiversity, of course, encompasses many different conditions, and the rate is around one in 10 to one in 20, when you consider all of them together. The research figures—and these are UK figures—have shown that the rates of ADHD are pretty steady, but autism has increased globally. This is partly because the way we've conceptualised autism and defined it has changed over the last few decades, but there may also be reasons we do not understand for why the rates have gone up.

We know also from research that even for conditions where rates have not gone up, like ADHD, the interesting thing is the impairment, or how much it interferes with day-to-day life. UK research has shown that that has increased in the last 20 years; in fact, that was work done by Cardiff University. So, somebody 20 years ago with ADHD did not have as many problems in the classroom or with friends as they do today, even if they have the same level of symptoms.

In terms of talking about the population, when it comes to services, we've actually looked at the Welsh data using SAIL, and in the UK, whilst some countries overdiagnose, particularly with ADHD, we tend to underdiagnose in the UK at the moment. And, of course, that is because our services are publicly provided rather than private. You know, the drivers are different. So, overdiagnosis does not seem to be an issue at the moment. In Wales, I can tell you that the rates of autism were pretty spot on in services—the same as they are in the population.

So, we seem to be quite good at picking up autism, at least as currently defined. For ADHD, we seem to be getting around 50 to 60 per cent in services, slightly lower. I hope that answers the question about rates, what's happened. Of course, neurodiversity also includes a broader range of issues and learning problems, and Amanda will say that they don't necessarily come to the NHS; they would be dealt with mainly in education. But, I hope that answers your question. I'm very happy to add a bit more.  

11:20

Yes, no problem at all—[Interruption.] I'm just in my office and the phone is going. My member of staff will talk quietly. Can I just ask in terms of what you said there in terms of an increase in some conditions, such as autism—? Instinctively, I think to myself, 'Has there been an increase, or is it just the case that we're now recognising conditions that weren't recognised in the past?' That's what I was thinking through in my mind as you were speaking there, Professor Thapar.

That's a really interesting question, and one that has really besieged researchers. What we have seen is, globally, this increase in prevalence, and some of it is definitely how we define it. Unfortunately, we don't have consecutive UK studies showing what's happened to autism over the years, and whether we have the same symptom levels. But, if we take ADHD, which is very closely overlapping with autism, even for people with the same level 20 years ago—perhaps it's due to society or co-existing mental health problems—they are more impaired today than another generation would have been before. We quite often see this in clinic as well; people will say, 'The dad is just like that', but the educational—. You know, he was allowed to run around in the playground, and that is, of course, not allowed now. 

You've got data now, haven't you, in terms of, 'Oh, my father was like that', but, at the time, that wouldn't have been recorded as any kind of condition. 

I just want to say that data on people born in 1958, where they would not have got picked up and treated, at least for ADHD—because we do have ADHD, not autism, data from UK cohorts—suggests that the outcomes are bad, unfortunately. So, not just mental health outcomes, but social outcomes. Also, we've just done a paper showing high rates of coronary artery disease and early mortality. So, even in the 1950s when they weren't picked up and treated—. Sorry, I've given you a whole load of research.

11:25

No, thank you. And Professor Kirby, I suppose my opening question, but also to add to that, what we have heard in evidence so far is that we've heard that girls and women are far more likely to be undiagnosed than—. I'm just trying to understand the reasons for that. Are there other groups as well that are more likely to be undiagnosed, and what are the reasons for that?

If I can pick up on other conditions, to start with, that are associated with neurodiversity. Developmental co-ordination disorder, dyspraxia, affects 3 per cent to 5 per cent of children in the population and does have an impact on mental health. Also, there's developmental language disorder—speech, language and communication impairments—which affects about 7.5 per cent of the population, and also has an impact on mental health as well. And there's tic disorders—Tourette's syndrome—as well. Often, we talk more about and hear more about autism and ADHD, and sometimes we hear less of those other conditions. Often, it's not thought about the impact they have on mental health, but there's good evidence to show they have an impact on mental health.

To your second point about missed and misunderstood, one of the groups, I think, certainly, are females. If we look back historically, we had a greater lens focused on boys rather than girls and their symptoms and signs, especially in autism and ADHD. We tended to be identifying and picking up more boys than girls and not recognising some of the traits and characteristics, for instance, in females, who can mask and camouflage their symptoms and signs, so can fit in more, at a consequence to their mental health. Females might have ADHD and be more inattentive, so less obvious to the teachers in the classroom, so they may well have been missed. So, we're starting to see more females coming forward now that we didn't see before.

Then, the other group are people who may have gone in another direction, so those are children who've been excluded from school. They may have been seen for their behaviours, but actually not considered that they may have ADHD or developmental language disorder, for instance, which are at higher rates in that population. Then, that starts a pipeline in the wrong direction, and often then they don't get diagnosed, because in that excluded population they have higher rates of looked-after children and children who are at risk of homelessness. They're out of a system, so often they're the ones that aren't picked up, or diagnosed with something else.

Thank you. That's interesting and helpful. Jack Sargeant.

Thank you, Chair, and good morning—yes, it's still morning. Good morning to you both today. I just want to pick up, following on from what you've just brought up, actually, on the impact of mental health and neurodevelopmental conditions, particularly perhaps if we look at the proportionality of the population. You mentioned autism and ADHD, and there are some statistics out there quite readily available to Members, but perhaps you could touch on other conditions and the proportion of those with certain conditions—maybe Tourette's might be an example, or other neurodevelopmental conditions—and the proportion that have co-occurring mental health problems as well.

Maybe if I mention Tourette's, which comes to psychiatry, and Amanda can talk about the learning problems. We've got really good research showing that, unfortunately, people who have a neurodiverse condition are at really elevated risk of depression, anxiety, obsessive compulsive disorder, deliberate self-harm, suicide and major mental illness as well, unfortunately—bipolar and schizophrenia. They're more rare, those; depression, anxiety and self-harm are more common. The other interesting thing is that for people who are neurodiverse, when they develop depression, anxiety or self-harm, that happens earlier and shows a more chronic course.

In terms of Tourette's specifically, the conditions that commonly go—. Obviously, all the neurodevelopmental conditions show really strong overlap with each other, which is why they are now considered together by researchers and diagnostic classification. But, people with Tourette's commonly have obsessive compulsive disorder, again, self-harm, like the other neurodevelopmental disorders, and may present with depression, anxiety and, in a smaller proportion but higher than the general population, more serious mental disorder. Amanda might like to say more about learning issues.

11:30

Sure, I can. So, when it comes to developmental co-ordination disorder, you see higher rates of anxiety and depression, particularly, than in the general population. Between 17 and 34 per cent of people with DCD will have anxiety, and 9 to 15 per cent depression. The other thing is the secondary impact on the parents of children. I'm here as chair of the ADHD Foundation. I think it's important as well to think of the secondary impact that having a child with a neurodivergent trait like DCD or ADHD or autism has on the parents' mental health as well.

When it comes to dyslexia, there is evidence of lower self-esteem, increased risk of anxiety and depression as well. There's less evidence for conditions like dyscalculia because there's been less research done on it. But, certainly, for dyslexia and developmental co-ordination disorder, we see higher rates, and particularly with developmental co-ordination disorder or dyspraxia—people often use that term instead—the impact on mental health is quite high. 

Thank you. Anita just wanted to come back in. Before I bring Anita in, perhaps, because you've already mentioned it, and it follows on to the second question as well—. Anita, you mentioned suicide risk, and, again, I've read in front of me here that autistic adults without a learning disability are nine times more likely to die by suicide, and children with autism are 28 times more likely, I think I'm correct in saying. That seems really high. But, just in general, if we perhaps generalise those with neurodivergence, is it generally higher, the risk of suicide, or attempted suicide?

And then, can I also ask, and bring maybe Amanda back in, as well as your other point—. I'm hearing, or I've heard, that there is disconnect between mental health services and neurodivergence. I can see nodding, so I'm sure you don't have to answer that; I can see agreement there. But if you would like to perhaps comment on the risk of suicide, and then your other point you wanted to bring up. 

Actually, I have data from 1,000 children with ADHD from Wales, and so, actually, it's not just in autism, but suicide and self-harm are really common and repeated in people with ADHD. And the large global studies have shown that's not just in the UK or in Wales—that's globally. It's not just premature mortality, but repeated self-harm and suicide. Certainly, that's been most well documented for ADHD and autism. I'm not aware of really long-term research on Tourette's, although clinically, of course, I have seen it. 

The other thing I just wanted to point out, just two things, is if you look at it the other way around and you begin with—because we've done research, and other people have done research—people with mental health problems and chronic depression in primary care, we and others have found that, actually, people who have got mental health problems, which have been really chronic, long term and not responding to treatment, quite a good proportion of them have had undetected neurodevelopmental conditions. So, the disconnect between neurodevelopmental and mental health is a problem across the lifespan, really. And, of course, these are obvious needs that can be met because the neurodiversity, if it gets picked up—. Forgetting about the mental health is a frustrating issue, really. 

Yes, just following on from what Anita said, I think it's the lack of knowledge and awareness around the fact that neurodevelopmental conditions might be present in adult populations that, until relatively recently, has meant that people have often had prolonged challenges with their mental health and neurodevelopmental conditions haven't been thought about. One in three people, at least, in the justice system are neurodivergent. Many of them will not have had a diagnosis even though they've got a higher risk of getting there. And it goes back to the point I made before, which is: people at the edges of society are often the ones who are the least likely to get diagnosed, because they're not in a system where they can have access to a GP, access to identification and services so easily, and they're the ones who end up being excluded, and then go from there to the school-to-prison pipeline, if we use that sort of metaphor, and they're lost along the way. And then mental health might be considered, but the underlying reasons, like ADHD, might not have been considered. 

11:35

Anita, if I can just perhaps tempt you with another couple of questions, which I think will fit in with your supplementary to Amanda's question there, perhaps we can look at the impacts of that, then. You mentioned the criminal justice system there. Perhaps you could tell us the impacts of those individuals living with neurodevelopmental conditions. And I'm also particularly interested in—Professor Kirby mentioned parents as well, and those who care—the impacts they have on them, but added to that, perhaps the cost to society both economically and to the individual in terms of their health, et cetera. So, Anita, if you'd like to go first there—you had your hand up.

So, actually, what I wanted to add almost relates to your question, so perhaps I'll start with that and then move to your question, which was just to point out, somebody asked earlier, 'Why does it seem more a problem now compared to a generation ago?' One hypothesis, but we don't know—. But what we do know is that somebody with a neurodiversity, of course, you have the impairment from the neurodiversity. If you have a mental health problem that has started early, like depression or anxiety as well, your impairment increases. So, if I come to the impairment specifically to do with neurodevelopmental, that's without having mental health problems, and we rarely see people with just neuro—. They usually have multiple neurodevelopmental conditions and mental health problems. The impairments we well recognise are, of course, educational, interfering with education, failing to really optimise according to one's ability, and not getting the sort of qualifications that one ought to for one's academic ability, and unemployment. We also know, of course, that there is a definite causal relationship with mental health disorders and self-harm, suicide. We know—and this is really important—that there are also really strong links with poor physical health—so, obesity, cardiovascular disease, coronary artery disease, diabetes, asthma. And, again, this seems to be a causal link and, also, across countries. So, in the UK and, certainly, in Scandinavia and other countries, there is premature mortality for ADHD and autism. Sorry, I keep saying those just simply because there's more data on them. We also know, as Amanda pointed out, that they get in trouble with the law and end up in prison, as well as out of work. We also know that, as to school exclusion, this group is more likely to be excluded. So, we also know that, looking at it from educational research, children with special educational needs—and of course, this group are in special educational needs—are at the highest risk for mental health outcomes and just generally worse outcomes.

So, I think those are the crucial impairments. They're multifaceted; they don't belong just to health, they belong, really, to education, social care, society. And the impact is not just on the person, of course; there are huge impacts on society and also on the family. So, I think perhaps Amanda might want to pick up on that.

We're a little bit squeezed for time, but did you want to come in at all, Professor Kirby, just briefly?

Only just to follow up, really, to say there is growing data about the social care cost, the economic cost, the healthcare cost. There is data coming forward on that, and papers have been done not only in the UK, but in other countries as well, to show the broader economic impact on the family and society. And I think that's very important, because it does link to the mental health impact of not being able to be so successful educationally and in employment, and the impact it has on justice as well. People are using services more, they're using accident services more—they might be having more accidents. So, it is in a number of different places that it's impacting.

Just a one-word answer to this follow-up question: we've spoken a lot about ADHD and autism here, so would I be right to suggest that we perhaps need more research in other areas—Tourette's being one, and there are obviously other areas?

Yes. Developmental co-ordination disorder and developmental language disorder as well are often the cinderella, but often having a great impact on day-to-day functioning. Little research—we need more.

Okay. Thanks for that. Sorry, Chair, I just wanted to ask that.

No, not at all. And for the record there, Professor Thapar was nodding in agreement with your question, so the answer was 'yes'. So, Rhun ap Iorwerth.

11:40

Diolch, Gadeirydd, a bore da i chi. A gawn ni fynd yn ôl gam at y cyfnod diagnosis am ychydig o funudau? Ewch â ni drwy'r broses o asesu a diagnosio cyflyrau niwroddatblygiadaol. Ydyn ni â'r llwybrau cywir ar waith yng Nghymru? Ai'r profion sydd yn cael eu defnyddio yng Nghymru ydy'r rhai cywir er mwyn sicrhau bod diagnosis yn digwydd yn y ffordd fwyaf effeithiol? Yr Athro Thapar yn gyntaf o bosib.

Thank you very much, Chair and good morning to you. If we can go back one step to the diagnosis phase for a few moments, would you take us through the process for assessment and diagnosis of neurodevelopmental conditions, please? Do we have the right pathways in place in Wales? Are the tests that are being used in Wales the right ones to ensure that diagnosis happens in the most effective way? Can we go to Professor Thapar first, please?

So, I think the first thing to realise is, I guess, that—and I'm a medical doctor by training—of course diagnosis is helpful for some purposes, because we need a kind of 'yes/no' decision for a lot of things that we have to make decisions about, like treatments—yes/no. But, actually, all the research has shown that, with neurodevelopmental conditions, there isn't a firm cut-off—they lie on a continuum. So, it isn't quite like an infection—you've either got it or not. And research has shown very clearly that—. And we've got other things in medicine as well: we've got blood pressure, and we call it high blood pressure and we decide to do something. 

So, in terms of the diagnostic assessment, do we have it right? This is quite a laden question. I mean, I think the primary thing is that we want to help children, young people and adults who've got these difficulties. And, of course, a diagnosis is helpful where you've got to have a specific treatment, and a diagnosis is helpful if you need specific resources and support in work, but it isn't the best way for allocating resources around education. They weren't designed for that. The sort of medical criteria, if you like, don't necessarily say, 'Well, how much is this child struggling in the classroom? How much is this family struggling?' So, whilst diagnosis can be helpful, it is not the be-all and end-all. So, we need to think it doesn't mean either/or—we don't get rid of diagnosis, but we do have to acknowledge that there is a spectrum. And quite often I'll see families who don't quite meet diagnostic criteria. I'll draw out a graph and say, 'Look, your child has still got problems, but I'm not going to use medication', for example, for ADHD. 

The second issue about assessment, I think, of course, because demand is high, and the assessments are really thorough, one of my concerns is that we spend a lot of money and time on the assessment to get this correct diagnosis, but the diagnosis, in a way, is not quite as hard-cut as, say, an infectious disease, and of course it's very time-consuming and it's really quite late by that stage. So, I feel that our diagnostics [Correction: 'support'], before the diagnostic process starts, need[s] to start early in schools and other places before they get to somebody like me who's very expensive, and it takes a long time to get to someone like me. I think the assessment process is long once they get to us, but I think the help should start before they come to someone like me, because people could wait for two or three years and not get any help. In the meantime, they've developed mental health problems and then they may have weeks and weeks of assessment and so, to me, that isn't logical from a research perspective, and it is of course extremely distressing for families and young people who, in the meantime, may be excluded from school.

So, I kind of feel that—. Sorry, I'm not sure I've answered your question, but everything should start before they get to assessment. And I think the emphasis should be much more on intervention and support rather than just the diagnosis. It's not saying we dispense with diagnosis, but, at the moment, everything rests on the diagnosis—you need the diagnosis to get everything else, and you're waiting for years before you do.

That's really interesting—there's a lot to take in there. What I see, and I'm sure other Members will have the same experience, is parents, for example, wanting to have that diagnosis—wanting to know what it is that their child needs support with, and, to them, that means diagnosis. I wonder, Professor Kirby, do you share the same viewpoint, in that there needs to be a fundamental rethink of when assessment begins, what an assessment is, what a diagnosis is exactly?

11:45

Yes. I agree with Anita very much that we have a sort of inverse care law; there's a bit of a bias in terms of who gets a diagnosis, who gets to get recognised, and who gets into services and who gets a diagnosis. I think the either/or approach misses a group of people that don't quite meet the criteria, or there is a bias in terms of the lens we're looking through. So, we have a greater lens around autism and a lesser lens around ADHD and a lesser lens around developmental language disorders and dyspraxia, even though they're quite prevalent conditions and have an impact.

So, teacher training is one thing that is really important, because I think that if we're to reach—. We haven't got enough professionals and we've only got a finite amount of money. How we reach more parents so they feel less frustrated is that they get support earlier. If you get support earlier, upstream, and as Professor Thapar said it's not categorical, it's dimensional, so you don't have it or not, it's degrees of impact and impairment you have. So, parents get frustrated and they think, 'The golden ticket is the diagnosis and once I've got it it's all going to be great', but actually what we need to be doing is getting more support earlier on, and the programmes like T4CYP that have been running, and thinking of upstream ways of supporting parents early, will reduce some of that anxiety that parents are feeling, because nothing is nothing.

Isn't it the case, though, that it's perhaps difficult to get decision makers and people with budgets to allow that support to take place unless there is a diagnosis? Or am I fundamentally misunderstanding these issues?

I think the challenge has been, as we've described this morning, that this doesn't sit in nice, neat budgetary pockets. So, there is health and there is education and social services, and police, you know, in terms of violence reduction; there are number of different organisations that have got different budgetary control, which will have an impact. For parents, a lot of the frustration is wandering around a system not knowing the pathway to gain support. And when you're worried, you hold onto that diagnosis as being, 'This is going to make the difference; if I have this, it's all going to be fine', rather than actually saying, 'Okay, how do we help support children who we may know might be at risk of neurodivergent conditions—and we've got an idea who they might be?' How do we get help and support early to reach more children? Otherwise, we end up with those who are at the edges, who are getting missed, ending up outside the system again.

Does that mean you don't then put children on waiting lists that become very long waiting lists, or do they still have to sit on some kind of waiting list for a more formal assessment down the line, and we have to somehow bring those waiting times down?

Well, nothing is nothing, so sitting on a waiting list is not much good, really, for anybody. I think that we need to have a triage system, which says, 'Okay, while you're waiting, if you've got challenges with this, let's provide you with some practical guidance'—a 'do no harm' approach. So, if a child can't tie their shoelaces, let's give them some strategies rather than wait three years for occupational therapy. It doesn't make much sense to do that. So, I would say, sitting there is no good, and what you might find by doing that is you take some of the weight off the waiting list because for some children, that early intervention might have an impact and reduce your load. And the people that clinicians need to see, who are a precious resource, will see those who are most complex, and some people will get to the head of the queue because they've got even greater challenges.

Yes. And it's about giving information to, in this case, parents, again, about why they're not on a formal waiting list if there's a better way of doing it. And I know the ADHD paper—thank you for it—refers to some parents who have tried to get an assessment, a public sector assessment, found they've been on a waiting list for too long, gone private, and then the NHS doesn't accept the diagnosis that they have been given privately. How much of a problem is that?

Well, I think, as a parent, it's hugely frustrating if you've got your child you're concerned—. I come from a neurodivergent family; I've been through this pathway in the past myself. So, if you are a parent and you're waiting and you're worrying, and your child isn't performing as well in school and it's having an impact on school relationships and everything, you go somewhere else, if you can and if you can afford it. It's two things there; if you know where to go and if you can afford it and you get the right help. The challenge is, then, if you have that, we don't have—. If that child needs a prescription, say for ADHD medication, they're not always going to get that, because they're not tied in to an NHS service and they're not going to get the ongoing support that they require post diagnosis as well, and that can be frustrating at a minimum, and really difficult for parents when they've gone through that process, got a ticket, but it's not being recognised.

11:50

Thanks, Rhun. We're a little bit short of time. We've got 10 minutes left, so just keep that in mind in terms of asking questions and trying to keep the answers as succinct as possible, if that's okay. Gareth Davies.

Thank you, Chair. Good morning, everybody. I suppose, in a way, I can sort of informally declare an interest, as I was diagnosed as dyspraxic at the age of seven, and I was diagnosed with bipolar disorder in 2019/2020, so to say I've been to hell and back has been an understatement. But you know, I'm well at the moment, so everything is going well now.

So, in terms of questions: we've heard that people with neurodivergent conditions are often denied access to mental health support, so how do we improve that, then, and make mental health services more accessible for people with neurodivergent issues?

Could I answer that, because it's something I feel quite passionately about? So, I think there are two things. We're already doing quite a lot around mental health in schools, and I think it's really important that we emphasise that people who are known to be neurodivergent, or who teachers suspect may be—let's not wait for the formal diagnosis; we know they're at higher risk for mental health problems. So, any of the early intervention programmes that are going on in schools, please look at them—that needs to be education for staff in schools and things. The same in primary care; for some people, the GP is still the first port of call, so we need that.

However, the one thing I find most frustrating, because I'm obviously in the specialist sector, in children and adolescent mental health services, is that—. Of course, it's great having neurodevelopmental services, but they are very divorced from mental health ones at the moment, and that is a real problem. And part of this, of course—and of course I've got the privilege of being an academic, so I don't have to answer to waiting lists—is that many of the interventions that are available, like psychological treatments for anxiety, depression, even recognising these things—. Again, I've seen lots of young people with ADHD, bipolar disorder—those skills, resources are not in the neurodevelopmental services. Now, of course, some of them may be there via schools, but I feel that the neurodevelopmental and mental health services, at least for CAMHS, need to be totally linked up. There should be sort of a two-way between them. I'm not in charge, I can't make that happen, but it's completely illogical, because some of the people in the mental health services also have neurodevelopmental, and for people to have to navigate two sets of services is a real problem.

I totally agree, and I think we need to marry up those two a bit better and improve provision in that sense. So, just to question about an issue about the one-size-fits-all approach, obviously, we've got different demographics and different geography across Wales, which dictates a different service depending on the local need. So, do we see more of a localised approach in some areas, or do you think the one-size-fits-all is a bit too prevalent and we need to tailor services a little bit more directly and strategically?

I think you need it both ways. There are going to be some general principles, which we just know and are evidence-based, that absolutely need to be across the board, like the issue of mental health and neurodevelopmental being like this. And, actually, early intervention and support for mental health, not just the core features of neurodiversity, is literally like everybody's business, and across education and health, everyone—social services, justice system. But, of course, there will be variability depending on what area of Wales we're thinking about. And I think it's fine to have some of that flexibility, but I do think there are general principles that would apply everywhere—across the UK and globally, we can say.

11:55

Just adding to that, I think that the point is that we're at the point where we need to make sure there is provision of services, there is adequate training and knowledge that is consistent, and that's regardless of where we are in Wales and across the UK. And I think there is an important point about transition of services from child to adult care that, often, it's at those junctures, when we move from children to adult care, when we move to adult mental health care, from CAMHS, and neurodevelopmental services, which often are stopping—. There aren't adult neurodevelopmental services in some areas, so we've got patchy inconsistency in service delivery as well that we need to think about across the piece.

Can I just add one more thing?

I think some of the issues are sort of more like public health or population and schools, and some are the issues are specialist, and it's not one or the other. Actually, both need to be shored up for people who are neurodiverse.

That's really helpful. Thank you very much. That's all from me.

Thank you, Cadeirydd. I speak as someone who, as a child, was diagnosed as a clumsy child, because that's how they diagnosed people. And if you've ever seen my handwriting, which most Members here have seen, you'll realise that maybe I was somebody suffering from dyspraxia. But I was born in the late 1950s, and therefore no-one bothered too much about it. My question to you, though, is: what progress is being made by the Welsh Government in developing neurodevelopmental services in Wales, and if that has an adequate priority? The problem we have with health is you put cancer, heart and stroke at the top, and everything else fights for next place in the list of importance.

I think it's really well recognised that, actually, globally, mental health and neurodiversity are at the bottom of the pile in terms of spending—spending not only on services, spending on research; it's across the board. I think what Welsh Government have done in terms of T4CYP—. I know that many other countries say, 'Oh, it's fantastic what you've done, like the CAHMS inreach, having neurodevelopmental services', but, of course, for those of us who live here, we can see what also needs to be addressed, which is like, 'Yes, great, we acknowledge the relationship between different neurodevelopmental conditions, which many people don't across the world, but the divorce now for mental health is a problem.' So, I think—. And we're also definitely better than countries where they charge for healthcare. We're miles ahead of the States. But I think it is really a shame that our—not our, but global values are such that the priority—. And these are young people, where it starts. Tomorrow's society—we should be investing in them. Why is it not on a par with physical health? I think Welsh Government have really done—. I'm proud to be Welsh, but I really think that we need to address this huge disparity and inequality for people with neurodiversity and mental health problems.

I think, just to follow up with that, T4CYP has been a brilliant start, but what we've got to do is try to extend that and recognise that neurodivergent conditions and mental health are like—. We have to see them in the same way as we think about physical conditions like diabetes: it's not short term, it's not only in childhood, it's got ramifications across a number of different areas of people's lives and it has an impact socially, economically and educationally. The problem we've got is where it sits, I think. We have to see the services join up to have a lasting impact.

I think we also—. I think we all recognise that, in medicine, certain things are much more common now, certain cancers, coronary artery disease, patterns of change, and we know that there's a huge increase in mental health problems in young people and—. We also need to address historic inequalities, but also be up to date with what we know from research to deal with what's out there, really. 

12:00

Thank you. Thanks, all. Does anybody else—? Do any other Members have any final pressing questions at all? No. In that case, perhaps if I could ask the final question to you both. Just to sum up the session this morning, as a committee, of course, we'll be making recommendations to the Government, so can I ask you for your priority recommendations in terms of suggestions to us as a committee to make to Government, when it comes to improving mental health and well-being for people with neurodivergent conditions? What would be your key takeaway points to us? 

Integrate mental health with neurodiversity—that every neurodiverse person, or possibly neurodiverse, even before they get to diagnosis, will receive appropriate mental health support. 

And increase the training and understanding of that in schools, so that early support can be given as well, so there's confidence in doing so. 

There we are. Those two suggestions there chime with some of the evidence that we had this morning in our informal stakeholder session as well, so that's extremely helpful. Thank you both for being with us. We've just got a small bit of other business to see to now, but, by all means, feel free to leave the meeting or stay in the meeting until we end this session. Thank you ever so much for your time this morning being with us, and we'll also send you a transcript of the proceedings so you can have a look over that, and if there's anything else you want to add to that, then please free to do so. Can I thank you ever so much, both, for your time this morning? Diolch yn fawr iawn. 

Thank you.

Thank you. Diolch. 

3. Papurau i'w nodi
3. Paper(s) to note

We move to item 3, and we have a number of papers to note. We have correspondence from the Chair of the Petitions Committee regarding unpaid carers. We have additional information from Professor Rob Poole from the Centre for Mental Health and Society at Bangor University, following his evidence session on 4 May. And we have correspondence with the Welsh Government regarding the UK Government's proposed legislation, and also from the Welsh Government with regard to the NHS executive for Wales. And also, a response to the committee's report on waiting times backlog. So, those are there in the public pack as well. Are Members content to note those papers? Thank you very much. I know we previously agreed that we'll write to the stakeholders that previously contacted us in regard to the NHS executive for Wales, so we'll do that as well. 

4. Cynnig o dan Reol Sefydlog 17.42(ix) i benderfynu gwahardd y cyhoedd o weddill y cyfarfod hwn
4. Motion under Standing Order 17.42(ix) to resolve to exclude the public from the remainder of this meeting

Cynnig:

bod y pwyllgor yn penderfynu gwahardd y cyhoedd o weddill y cyfarfod yn unol â Rheol Sefydlog 17.42(ix).

Motion:

that the committee resolves to exclude the public from the remainder of the meeting in accordance with Standing Order 17.42(ix).

Cynigiwyd y cynnig.

Motion moved.

In regard to the next item, item 4, I propose in accordance with Standing Order 17.42 that the committee resolves to exclude the public from the remainder of today's meeting. Are Members content? Diolch yn fawr iawn. In that case, our next public meeting is on Thursday, 23 June, and we'll now go into private session. 

Derbyniwyd y cynnig.

Daeth rhan gyhoeddus y cyfarfod i ben am 12:03.

Motion agreed.

The public part of the meeting ended at 12:03.