Official Report 1060KB pdf
The next item of business is a members’ business debate on motion S6M-19319, in the name of Daniel Johnson, on welcoming the report by the Royal College of Psychiatrists on support for neurodevelopmental conditions. The debate will be concluded without any question being put, and I ask members who wish to speak in the debate to press their request-to-speak buttons.
Motion debated,
That the Parliament welcomes the publication of the report by the Royal College of Psychiatrists in Scotland, Multi-system solutions for meeting the needs of autistic people and people with ADHD in Scotland; notes the reported unprecedented increase in the number of people across Scotland, including in Edinburgh, seeking support for neurodevelopmental conditions (NDCs), particularly attention deficit hyperactivity disorder (ADHD) and autism; understands that, as of March 2025, over 42,000 children and 23,000 adults were waiting for a neurodevelopmental assessment, and that this represents an increase of over 500% for children and 2,200% for adults since 2020; further understands that there is currently no standardised national pathway for diagnosis, treatment and support for NDCs, and that in the absence of appropriate services, individuals are being referred into general mental health pathways, not because they have a mental illness, but because there is nowhere else for them to go; believes that this is placing unsustainable pressure on Scotland’s mental health system; further believes that timely diagnosis and intervention for ADHD and autism can significantly improve quality of life, reduce suicide risk and prevent secondary mental illnesses; commends the work of the Royal College of Psychiatrists in Scotland in developing a comprehensive, value-based framework to address these challenges, and notes the view that simply expanding existing structures is not a sustainable solution, and that a multi-system and society-wide response is needed.
12:51
I thank members from across the parties who have supported my motion to enable this debate to take place. The debate is important for a number of reasons, not only to discuss the recommendations in the report by the Royal College of Psychiatrists but to mark the progress that we have made.
It is a little bit more than eight years since I first stated in the Parliament that I have attention deficit hyperactivity disorder and that I take medication for it. Then, in 2018, I held, I think, the first debate in the Parliament to discuss ADHD by itself.
We have made much progress. When I reflect on the context then and the context now, I think that it is now much easier to talk about ADHD. There is a much greater understanding and acceptance of it. Indeed, I find myself attending national health service briefings and other meetings at which I am not the only person raising the issue. Colleagues around the chamber find it equally important and raise the issues, too. That is fantastic.
However, there has also been an odd flipping of the situation. Back in 2017, there was stigma; it was difficult to speak up and the Government often found itself justifying why diagnosis and prescribing took place. Now, we have public demand for diagnosis, assessment and prescribing, and the Government is explaining why those things are not taking place. Most recently—and we need to talk about this in the debate—the Government has been explaining why diagnosis is not required.
That situation is dangerous, and we need to take care. We have to consider the scale of the problem. There are 42,000 children waiting for assessment—that is a 500 per cent increase. We also have 23,000 adults waiting for assessment—that is a 2,200 per cent increase. Unfortunately, we have had to rely on the Royal College of Psychiatrists to produce those numbers, because the Scottish Government is not producing them.
Behind those numbers is not just a cost in terms of the frustration and human misery caused by a failure to diagnose and provide support, but a real economic cost. It is estimated that undiagnosed autism spectrum disorder costs the economy £44 billion and undiagnosed ADHD £17 billion. In the prison population, 25 per cent are estimated to have ADHD against 3 to 5 per cent of the general population. There is a real cost to failure that we have to address. Indeed, there is not one single neurodevelopmental condition that is not overrepresented at least threefold in the prison population. That is why the report by the Royal College of Psychiatrists is so important—it sets out a clear plan of what we can do now in wider policy, and in clinical action and policy, to address the issue.
On the point about there being no need for a diagnosis, the report contains important recommendations—in particular, recommendations 1, 2 and 5 of the 10 that are made—on non-clinical pathways and how we can adjust approaches in education and wider public policy to help people with ADHD and autism. Those practical, reasonable adjustments do not need a diagnosis. Recommendations 9 and 10, which are about improving understanding more widely across the general population, are important, too.
However, the bulk of the recommendations in the report are on clinical pathways and access to diagnosis. Explicitly, recommendation 3 talks about increasing access to medication. I am not denying that medication is important. Let me be very clear, as I have been clear in the past: for me, as for many people, medication was the biggest single step that I could have taken to help me with my condition. Indeed, it is what many people approach me about, as they do constantly. They say that medication helps with their ability to hold down a job, maintain relationships with their family and deal with the chaos that ADHD often brings.
The report also sets out the need for new guidelines, including from the Scottish intercollegiate guidelines network, as we do not have any SIGN guidelines for ADHD. We also need new general adult psychiatric standards, and we need a four-tiered model for accessing diagnosis and support. Those are clear and practical points.
Another feature of the report is its statement that we need to tackle primary care head on. In recommendations 3 and 4, the Royal College of Psychiatrists makes it explicit that we need to bring forward a structure and a means by which general practitioners can actively participate in prescribing. We have seen changes and advances in our understanding of the condition, which is critical.
Let us talk about the other elephant in the room: shared care. The reality is that GPs across this country have stopped what was once the understood and received practice of entering into shared care on the basis of a private diagnosis. I do not think that someone should have to have a private diagnosis to get the treatment that they want, and I certainly do not want a system that relies on that, but we do need a pragmatic approach.
I have had lots of conversations about that in recent months, and GPs will say that they are not allowed to do shared care any more, but that is not true. Health boards are clear that they are not preventing it, and even the local medical committees say that the guidelines that they have produced do not prohibit it. However, health boards, GPs and local medical committees seem to be undertaking some kind of mutual blame activity, and are all pointing the finger in another direction.
We need a pragmatic approach in which it is recognised that private diagnoses are very often made by the very same people who would make an NHS diagnosis. Therefore, I am asking for that sort of practical approach with, as has been called for, the standardisation of what a good diagnosis looks like, so that we can accept diagnoses that have been made elsewhere.
Will the member give way?
I am very happy to give way to Sandesh Gulhane, but he will have to be brief.
I declare an interest as a practising NHS GP.
I would just note that, when someone gets a private diagnosis, it is no longer shared care, as they will no longer be seeing that private consultant. What we really need is for the diagnosis to be transferred into the NHS for shared care to happen.
I do accept that, and that view is adopted in the standardised approach. It is shared care if the person continues to see the private practitioner, but the NHS GP does the prescribing. However, we do need standardisation, pragmatism and, above all else, clarity.
To the minister, I say that we should have the numbers so that we can understand how many people are waiting; we should have clear standardised approaches; and we must have a plan to clear the backlog, because, behind it, tens of thousands of people are in crisis.
12:59
I thank Daniel Johnson for securing the debate. Daniel and I have had a couple of chats about this issue over the past couple of months, and we are all aware of the issue through our constituents. It is multilayered and multi-agency, and it impacts on children and families in health and education settings.
As many others will have done, I met the RCP in Scotland just last week to discuss its report. A few issues have come through. A key issue is the impact of neurodevelopmental conditions on many aspects of people’s lives; indeed, they have major emotional, social and health impacts.
Daniel Johnson’s point about access to diagnosis and medication is incredibly important. As we have discussed, there is also an issue in relation to GPs in health boards such as NHS Lothian. The issue of standardisation is really important, given that different GPs take different approaches.
Daniel Johnson mentioned the number of people who are impacted—NDCs impact roughly 10 to 15 per cent of the population. It is good that people are beginning to talk about the subject, because I think that such conditions are probably significantly underdiagnosed.
Between 2019 and 2021, the number of referrals increased between 500 and 800 per cent across health boards. That increase is being driven by several factors, one of which is that society is more aware of such conditions. In addition, there are unmet historical needs, as well as population growth. There is no denying the impact of Covid, either.
As the RCP has said, this debate is not necessarily about finance, although I will touch on that subject in a moment. More important is the need for standardisation of the referral, treatment and support pathways, and I hope that the minister will pick up on that issue—I have already had a quick chat with him about it. Without a nationally agreed pathway, it is difficult to see how we can move forward. The pressure will only grow in the coming months and years as people become more aware of neurodevelopmental conditions. Constituents regularly approach me on the subject, because, even within East Lothian, GPs take very different approaches.
As for what we should do in the future, which is the key issue addressed in the RCP report, there are some lessons that we should take on board. As part of the national autism implementation plan, a feasibility study on pathways was undertaken in 2021; the fact is that we are still talking about pathways, and there is still a need for such pathways to replace single-condition approaches. That is an important point. Those pathways must be accessible across the 14 health boards.
Daniel Johnson also talked about the need to deliver local stepped care pathway models. I interact with Stronger Together for Autism and Neurodivergence, which is very active in East Lothian, and that is one of its key aims. Such models include third sector and community services, such as access to self-help, peer support and a range of other services prior to—and, of course, after—diagnosis.
The RCP makes a number of other key recommendations that must be progressed. For example, it talks about the need for a governance framework and a competency-building framework at all levels of service provision.
Daniel Johnson touched on the delivery of the RCP’s four-tiered pathway proposal. The first tier involves a national public health approach, which is all about developing a public health campaign to promote awareness and understanding of neurodevelopmental conditions, with an emphasis on self-management.
The second tier is the availability of national self-help resources, which will involve creating a centralised platform to provide comprehensive self-help. The third is about establishing specialist third sector commissioning for NDCs. That provision must be localised; indeed, we have discussed the importance of that with NHS Lothian. There is almost a blame game going on, with the health board saying that GPs are responsible for local provision, and we need to clear that up. A key issue is how we prioritise investment in developing local provision, and there needs to be a multidisciplinary approach that includes clinicians and GPs.
There is much more that I could say, but I conclude by thanking Daniel Johnson for securing the debate. The issue will continue to be debated, and I look forward to hearing from the minister on the RCP’s report in particular.
13:03
The RCP’s report lays out in clear and evidence-based terms what many of us have been warning of for years. Demand has soared. As of March 2025, more than 42,000 children and 23,000 adults were waiting for a neurodevelopmental assessment. We are not talking about a marginal increase. Since 2020, children’s waits have risen by more than 500 per cent, and adults’ waits have risen by 2,200 per cent. Those numbers represent lives on hold: children becoming adults and being sent to the back of the queue again; parents in despair; and adults left without clarity, support or hope.
However, let us be clear: the scale of the crisis is not simply the result of increased demand; it is also a result of the fact that, for years, the Government has reassured itself that everything is fine. It is most certainly not fine and, shamefully, the Government knows it because it has conflated data, changed the way in which data is collected and used flawed data to game the system.
The royal college’s recommendations are not radical and they are not rocket science. As Daniel Johnson said, access to medication is pretty basic. The recommended actions are the basic building blocks of a functioning system. The Scottish National Party Government should have put in place a clear national pathway with timely diagnosis and treatment and seamless support years ago. Instead, we have chaos.
Data collection is fundamentally poor. NHS Grampian cannot separate neurodevelopmental cases from child and adolescent mental health service cases in the data. We cannot even understand the scale of need. NHS Lanarkshire provided data that was two years out of date, and when we phoned the board, we learned that the real waiting time is two years longer than was publicly reported. That is not transparency.
Does Sandesh Gulhane agree that it is confusing when health boards say that they cannot report data but they can say how long people are going to wait? They clearly know what people are waiting for, but they are not reporting it. Does that not also confuse the member?
It absolutely does confuse me. What health boards say to their patients about waiting times and what they publish are completely separate. We have seen that in NHS Lanarkshire. What we are talking about is not transparency but obfuscation, and it is unacceptable.
Without access to correct data, how can a service possibly be planned? Without a clear pathway, people will fall through the cracks, and the situation is placing intolerable pressure on an already overstretched mental health system.
We know about the consequences of that. We heard Daniel Johnson talk about worse educational outcomes, higher rates of unemployment and the significant overrepresentation of individuals with autism and ADHD in the criminal justice system. Untreated ADHD increases the risk of substance misuse. Untreated autism increases the risk of anxiety, depression and suicide. Early diagnosis is not optional; it is life changing and life saving.
The minister has called for a round table on 15 December. I will be honest and say that I am sceptical about that. We have had countless round tables and warm words, but we rarely see action, so I would like to ask a few questions.
What has been done since the minister appeared before the Health, Social Care and Sport Committee on 28 October? Has he met members of health boards to ensure that data is collected appropriately? Is reliable data now being collected? What steps have been taken to ensure transparency?
Scotland needs a multisystem, society-wide response. We cannot simply expand broken structures. We need coherent pathways from diagnosis to treatment to long-term support, and we need those now. The royal college has done its job; it is time for the Scottish Government to do its job.
13:07
I thank Daniel Johnson for bringing this important debate to the chamber. Working with other members across parties, Daniel Johnson has been a real champion in the Parliament for people with autism, ADHD and other neurodevelopmental conditions.
The report adds to the growing body of evidence that change is needed to our approach to assessment, diagnosis and support for neurodivergence in Scotland. Members might be aware that, earlier this year, the Health, Social Care and Sport Committee conducted an inquiry that gave people and families who have experienced neurodevelopmental services the opportunity to share those experiences and recommend changes to ensure that we can better serve our neurodiverse constituents. I look forward to the report being published. It was an important inquiry and many lessons were learned, so I hope that the report will reflect that and will be useful in adding to other on-going work in the area.
The royal college report rightly points out that, despite the dramatic rise in need, Scotland still lacks a dedicated and standardised pathway. It goes on to say that, in the absence of appropriate services, individuals are being referred into general adult mental health pathways, not because they have a mental illness but because there is no suitable alternative. The report points out that those services have never been designed to assess or support people with those conditions and they have just become a catch-all for those referrals.
That structural mismatch is now overwhelming the system. Waiting lists have grown to unmanageable levels. It is therefore important that issue is addressed.
I think that members will recognise what the report is saying, and I want to raise the voices of my constituents, because the frustration of people and families cannot be overstated.
Over the four years that I have been in Parliament—I have said this before—the most frequent requests that I have got in casework have often been very simple. Constituents ask, “Please can you help me understand?”, whether it is to do with waiting lists or service provision for people with autism, ADHD or neurodivergence. They ask, “Can you help me?” with primary school or secondary school, or as children move between primary, secondary and further education, when families often find themselves in conflict.
Is the member aware and does she agree that, historically, ADHD has been underdiagnosed in girls and women as a result of differences in the presentation of symptoms? While boys often display hyperactivity and externalised behaviours, girls might show inattentiveness, emotional sensitivity and internalised struggles. The profession is only just realising that. Does the member agree that part of the strategy should focus on girls and women?
I thank the member for that important intervention; I have had that issue raised with me in casework.
I believe that colleagues in the chamber have heard very similar requests from constituents. More recently, I have heard about the use of the private sector for assessment, which can be incredibly stressful, as other members have mentioned. Many children—and, as we now know, adults—are seeking private assessment after having made many attempts to get an assessment through the national health service. The long NHS waiting lists and the lack of service mean that exhausted families are often using much of their own money and resources to get a diagnosis. That is very stressful, and even after they do that, there is no clear pathway for them.
Many of us in the chamber have heard about how poorly co-ordinated shared care is. That has been mentioned today, so I will not go over it again. However, I note that families are often rejected not just for medication, but by GPs and CAMH services. A constituent raised with me a similar situation in our education system. Parents seek a diagnosis, and then, within the education system, children are denied community services such as occupational therapy or speech and language therapy because their private diagnosis does not link in with the school’s way of recording and reporting, and supporting people.
Parents report to me that they feel that public services—health services, social care, education and criminal justice—lack a basic understanding on the front line. That is an important point, and I will finish on it. The resources are often there, at what has been described to me as quite a high level, but the question is how we enable the front-line teams to pick up on the issues.
I would have liked to say more, Deputy Presiding Officer, but I appreciate the time.
13:12
I congratulate Daniel Johnson on securing this important debate. Mr Johnson and I co-hosted an event in October: the RCP report was launched in the morning, and a session took place later where colleagues came along to ask questions. I thought that it was a really helpful session. The report, in my view, is a very important offer to all of society in Scotland.
I will highlight one of the key messages that came out of that session, which was very unusual for the types of events that we all attend as members. Usually, when we go to such events, we always hear, “Can we get more money?”, but one of the key messages from that event was that there is a lot of money in the system—as Carol Mochan just touched on—that could be better invested in people. There was certainly an ask for more money, but it was not the key issue.
The 10 recommendations in the report are all extremely important, but I will touch on just three. The recommendations are helpful in promoting engagement and trying to deliver better outcomes for autistic people and people with ADHD. I have engaged extensively with constituents and with family members who have children with autism or ADHD, and I know that there is a societal challenge in Scotland that we have to try to address. There are, of course, wider issues in this area that exist not just in Scotland but around the world. Nonetheless, in Parliament, we need to think about what we, as parliamentarians, can do.
I sent the report to constituents to let them read and digest it, and make up their own minds as to what they think that it can actually do.
All 10 of the recommendations have merits, but some would be challenging to deliver, particularly in a short timescale. To me, recommendation 1, which Daniel Johnson touched on, is really important. I will read out the title for the Official Report. It is:
“Demand driven by the need for support in the workplace, in places of education and from the benefits system”.
What is proposed could be transformational in terms of healthcare being offered. There is a challenge regarding the Department for Work and Pensions, because we do not have those powers here. It might therefore take a bit of time to deal with that recommendation, but it should be dealt with. Constituents have regularly raised issues with me regarding a need for diagnosis before care is provided. The five suggestions that are made under recommendation 1 could be beneficial in that regard, although I am of the opinion that some of them would be challenging to deliver—the one that involves the DWP in particular.
Recommendation 2 calls for a public health-informed approach. That makes sense and, if we push for it, it could be achieved as a quick win.
Recommendation 5, which is on page 15 of the report, is about national strategies and resources. To me, it is one of the most important recommendations. I hear from people who are concerned regarding the high percentage of people who are diagnosed with neurodevelopmental conditions. It is challenging for those who need support, including those who need more advanced support, and the recommendation is crucial to help to deliver that.
I am conscious of time, so I will not go through all the recommendations, but I welcome the report, which is helpful. I hope that the recommendations will stimulate further discussion and dialogue, but also decision making so that we can get better outcomes for the people we all represent. We have societal challenges, but the report can certainly help to move the dial. Healthcare professionals have provided a set of recommendations to help. They know that there is money in the NHS system that could be better invested, and the recommendations are very worthy of consideration and further discussion, because they could genuinely make a huge difference for the people we are here to represent.
13:17
I thank my friend and colleague Daniel Johnson for bringing the debate to the chamber. I applaud his continuing drive to deliver a better pathway for those with neurodevelopmental conditions, and I applaud him for using his own experience to highlight the subject. I also thank the Royal College of Psychiatrists in Scotland for its comprehensive report on multisystem solutions for people with ADHD and autism.
Attention deficit hyperactivity disorder involves differences in attention, impulsivity and hyperactivity. Mr Johnson gave a comprehensive overview of the system’s failings and the dire need to deliver support and a national strategy for the hugely increasing number of people who are seeking assessment and support for neurodevelopmental conditions, given all the negative impacts that are associated with lack of support.
I will not rehearse all the important issues that Mr Johnson spoke about so well, but the one that worries me the most, which has reared its head again, is the lack of coherent and consistent data collection. As I have said many times, our health service lacks a universal system that allows data collection. In one way or another, we will have to address that across the health service in general, because such a tool would be a huge help in tackling issues.
I also want to highlight prevention, which is one of my favourite topics. I have some limited experience of coaching athletes with autism and fetal alcohol spectrum disorder, and what I have witnessed—
Will Brian Whittle take a brief intervention?
I will.
As I often say to people, beyond medication, the other critical factors are good sleep, hygiene and exercise. I emphasise that access to sport is critical in helping people to manage ADHD.
I thank Daniel Johnson for finishing my speech for me. [Laughter.] I was going to say that I witnessed young people flourishing and developing in a training environment that delivered structure and self-discipline in their lives. It was great to see, and one of them even ended up doing a college course on health and fitness.
More telling is what happened to those athletes during Covid, when they were starved of that structure in their lives. Without that framework and focus, there was a significant slide, which was much worse than that for the other athletes in the squad. One ended up not being able to control his eating and being unable to get out of the house to take part in activities. He ended up putting on so much weight that he never got back to training—and he was an international athlete.
Having access to activity, a pathway to self-expression and a route to channel their energy can be so important for some people who have neurodevelopmental conditions, because it can help to provide balance.
I spoke to the Royal Society of Psychiatrists and some autism representatives in the third sector to see whether there was any agreement on the points that I am exploring. Thankfully, there was agreement.
I take every opportunity to highlight the importance of sport and activity to the nation’s wellbeing. I suggest that, in these instances, they can be even more important. I also suggest that the continued decline in opportunities to be active in the school environment and in our communities might be a contributing factor to the exponential and unprecedented rise in the number of people who are requesting ADHD assessments. I consider those numbers to have always been there, under the surface. However, I wonder whether, as part of prevention and, as Daniel Johnson put it, the non-medicalisation of the condition, many people with neurodivergent conditions would benefit from a reversal of the decline in opportunities to channel their hyperactivity.
Again, I thank Daniel Johnson for bringing the debate to the Parliament.
13:21
I, too, thank Daniel Johnson for bringing the debate to the Parliament. I also thank him for his bravery in being so vocal about some of the challenges that he has faced, which is not something that people appreciate enough.
My interest in this issue was triggered by the eminent Dr Premal Shah, who set up the Lothian adult ADHD and ASD clinics. He is a long-term family friend and quite the force in this area.
I agree that the report is excellent. I enjoyed reading it, and I congratulate the Royal College of Psychiatrists in Scotland on its work. I particularly liked the framing of this issue as a “wicked problem”—one that is complex, interconnected and resistant to quick fixes. We need to bear that in mind. It is not just a health issue; it is a systemic challenge that touches every part of society.
We know that neurodevelopmental conditions intersect with education, employment, justice and social care. We also know that people are being referred into mental health pathways that were never designed for them, which—we must not forget—is overwhelming clinicians as well as delaying care for those who have severe mental illness. The number of vacancies in psychiatry is rising, and burnouts are accelerating. The system is fundamentally under strain from every angle.
We have heard waiting list figures for assessments. Some regions are experiencing delays of more than five years, and I have also had a high number of inquiries from my constituents about their own issues.
I want to focus my brief remarks on the financial cost of those problems to our economy. The figures that have been quoted directly reflect a loss of productivity, and we know that there are productivity challenges in Scotland and across the United Kingdom. Higher unemployment rates increase reliance on benefits. Businesses are losing skilled workers who cannot access timely support. Schools struggle to keep pupils engaged, which leads to lower educational attainment and reduced future earnings. The justice system bears additional costs through higher rates of offending linked to untreated conditions. Every delay in diagnosis and intervention translates into lost economic output and increased public spending. That is a cycle that we cannot afford to ignore.
We know that the funding is fragmented and insufficient. Unless there are dedicated funding streams, we cannot establish the specialist pathways that are needed. However, as I have said, the problem is complex, and so are the mechanisms for funding. We need to acknowledge that. I agree with the pragmatic approach that is suggested in the report that there should be, in the interim, a separate funding stream that is dedicated to wider service development.
Much more thought needs to be given to the potential for digital solutions. Coming from an information technology background, I know that that is easy to say, but I absolutely acknowledge the complexity, and I appreciate how difficult it will be to provide those solutions. However, if we could start to unlock the data sources, that would result in some very powerful tools.
I will pick up on some of the points that have been made on data. We cannot solve what we cannot see. I absolutely agree that we need robust data collection, but we need that data to be disaggregated by sex. We know that ADHD and autism present differently in women and girls. We know that women are much better at masking and at using coping strategies to hide distress, but that delays diagnosis. Such girls are underidentified in childhood, and women can often reach a crisis point before receiving—
Will Michelle Thomson take an intervention?
It would need to be brief, as the member is about to conclude.
I am indeed. I was coming to my last sentence.
Without sex-specific data, we risk designing services that fail half the population. That is not a technical detail; it is the foundation for equitable care.
13:25
I thank members from across the chamber for what has been a thoughtful and constructive set of contributions. The strength of feeling that we have heard on behalf of autistic people, people with ADHD and those with other neurodevelopmental conditions, as well as their families and those who support them, underlines both the scale of the challenge and, I think, our collective determination to deliver meaningful change.
I thank Daniel Johnson directly for securing the debate and for acknowledging the important work of the Royal College of Psychiatrists in Scotland in producing its recent report. The college has made a valuable and timely contribution. The Scottish Government welcomes its focus on multisystem reform, early intervention and support based on need, not simply on diagnosis. Those principles strongly echo our own approach, and they reflect the perspective of professionals, families and communities, whose voices must continue to shape the way forward.
Members are absolutely right to highlight the unprecedented increase in demand for neurodevelopmental assessment and support. We are not alone in saying that. As I have said previously, that trend is emerging across the United Kingdom and internationally, with growing pressure on systems that were never built to manage demand on the present scale. We must meet the challenge, however, and we must do so in a way that recognises the diversity of neurodivergent people’s experiences and the complexity of the systems that they interact with across health, education and social care.
Members have spoken about waiting times. We appreciate that waiting for assessment or support can be challenging, but we are working hard to make that experience better for individuals and families. A diagnosis can be profoundly important to a person’s identity and understanding of themselves. For some, particularly those seeking ADHD medication, it is essential.
Diagnosis alone is not the solution, however. A traditional NHS waiting-list model cannot meet the scale or complexity of the need that we now face. I have heard from many experts about the risks in overmedicalising our response. As the royal college has emphasised, a co-ordinated multi-agency response is required, focusing on timely, needs-based support from the outset. For children and young people, the national neurodevelopmental specification sets a clear expectation that support should begin on the basis of need and should not be contingent on a clinical diagnosis.
Implementation has undoubtedly been challenging in the face of rising demand, but we have already taken significant steps. We have invested in service pilots, in the testing of digital assessment tools and in family support initiatives, and we are working to strengthen multi-agency pathways, building around our getting it right for every child national approach. We have also published the joint review of the implementation of the national specification, jointly carried out by Scottish Government and the Convention of Scottish Local Authorities. The review identifies short, medium and long-term actions to support children’s service partners to deliver the specification more effectively.
To drive that important work forward, we have established a new cross-sector task force, jointly chaired by senior leaders from education and health. Its purpose is clear: to accelerate and co-ordinate systems-wide improvement, drawing on lived experience, clinical expertise and good practice across Scotland.
I have listened intently to what the minister has said. I agree with much of it, but I caveat that getting a diagnosis involves an element of relief for many people, who then recognise that they need to deal with something. There is a relief and a mental health issue in getting a diagnosis.
I appreciate the problems. In emphasising the importance of a needs-based approach, I want to be absolutely crystal clear that I recognise the importance that is placed on diagnosis. I would not want my remarks to be misconstrued in any way, whether unintentionally or intentionally, nor to be suggestive of any language that relates to notions of overdiagnosis. I want to be very clear about the approach. My focus is on ensuring that people can access support as quickly as possible and that diagnosis should not act as a barrier to or means of gatekeeping that. I recognise that, for many, great importance is placed on diagnosis for identity and self-understanding and, in some cases—when it comes to ADHD in particular—for access to medication. We recognise the need to address all those issues quickly. However, as I have said, we need to do that with sensitivity and rigour, recognising the complex and diverse nature of the issue.
Members have raised the importance of pathways, including adult pathways. We are committed to ensuring that adults receive support that is as consistent and responsive as possible. Recent work is helping us to move firmly in that direction. That is why we have fully accepted the recommendations of the adult neurodevelopmental pathways report and are working with partners on implementation. Our autistic adult support fund and our investment in the national autism implementation team are already supporting more flexible, needs-based approaches for adults across Scotland.
Rightly, members have emphasised the lack of robust national data. Improving data is essential if we are to plan effectively, understand unmet need and support targeted investment.
Daniel Johnson rose—
Before I take an intervention from Daniel Johnson, I will say that work is already under way with health boards and local authorities to understand that data, including what data is currently collected and how we can move towards a more coherent national approach.
On the points that Dr Gulhane raised, I am happy to confirm to him that I have continued my on-going engagement directly with health boards. Indeed, I met a health board just this morning and spoke at length about the importance of neurodevelopmental support and an understanding of the particular challenges and pressures that are faced.
I give way to Daniel Johnson.
I am grateful to the minister for giving way. The point about data is important. However, I will ask him about pathways, because there are clear and specific steps for having a consistent four-stage pathway. Most critically, it is about requesting SIGN guidance for ADHD and, most fundamentally, looking at who can prescribe and at what point in the system they can do so. Has the minister asked his officials to look at those specific points?
All the issues that Mr Johnson has related are part of the wider considerations. As was touched on, a summit is coming up on Monday at which we will have an opportunity to discuss a lot of the issues in more detail.
I have noticed the time, Presiding Officer. I have now gone over what was allotted to me.
Again, I thank members from across parties for their contributions. The challenge is significant. It requires a response that involves the whole system and all of society but, ultimately and most important, is also focused on the needs of the individual.
Michelle Thomson rose—
I was intending to conclude, but I am happy to take an intervention.
Make it very brief.
It will be extremely brief. I genuinely consider it imperative that data is disaggregated by sex, for the reasons that I have outlined. Is the minister able to commit to that?
That absolutely needs to be considered as part of the process. When it comes to understanding any data, we would not want to limit ourselves to sex, as important as that is for the reasons that Michelle Thomson set out about different presentations, such as when it comes to masking, for example; those are important points but, as has been touched on by other members, we also need to understand the socioeconomic implications. There is a lot that we have to do on data, and I recognise that.
I will close by again thanking members for their contributions. I look forward to working constructively with members of all parties, and wider partners, to improve our response.
That concludes the debate.
13:34 Meeting suspended.Previous
First Minister’s Question Time