Chamber and committees

When it comes to the work that we are taking forward on understanding data, I want to consider the opportunities for presenting it. I should caveat that with my previous points about the paradigm in this respect and thinking of CAMHS referrals in a traditional NHS waiting list context. Given the complexities and the range of interactions involved, that is probably not appropriate. Therefore, I do not want to make a commitment to the committee with regard to a particular mode or form of presenting data.

That said, I certainly recognise the strong parliamentary and public interest in ensuring the fullest availability of the information that is held, and I appreciate the work that the committee has undertaken and its engagement with health boards ahead of this inquiry in order to present figures that I think are important and which illustrate the scale of existing demand. Therefore, without committing to a specific form or mode of presentation, I want to assure the committee that, in respect of the work that is being undertaken, I am giving full consideration to how more robust, reflective and clear data can be presented and shared and ultimately, deployed and utilised to ensure that need is met.

I am conscious of the points that have been raised and the comprehensive briefing that was provided by the Scottish Parliament information centre just before the inquiry was launched. Ultimately, health boards are responsible for such operational matters in their day-to-day work, but this speaks fundamentally to my point about the challenges that we have right now with data. Of course, this is not just an issue that we are considering in health boards; it is also an issue in local authorities and educational settings, and it speaks to the level of complexity that we are talking about and why a traditional NHS waiting times approach to publishing lists would not—

The committee has heard evidence about using multidisciplinary teams and taking a partnership approach. I come back to the important point that Stephen McLeod made about using the data that we already have in the system and the range of opportunities to develop an understanding of an individual’s needs. We need to utilise that more fully, particularly in the context of children and young people.

On international examples, I come back to the comments contained in the paper from the Royal College of Psychiatrists in Scotland, which recognised that this is an international phenomenon, with a significant increase in demand. If I recall correctly, in the RCPS’s words, no system in the world could realistically respond to the level of demand.

We are certainly open to examples of good practice, but the work of the National Autism Implementation Team and the national specification take the correct approach that policy in Scotland should have a needs-based focus. The issue now is implementation. In looking for other approaches that we can add to that, as I touched on earlier, we very much welcome the paper from the Royal College of Psychiatrists in Scotland and will give careful and detailed consideration to its proposals.

To answer the question in the spirit in which it was asked, I will say yes. However, I caveat that with what I said in my opening statement about conceiving of this in a traditional NHS waiting times paradigm. To ensure that there is broader consistency across Scotland and in people’s experiences, we need to continue to work towards achieving a clear picture of the national baseline. I know that the committee has heard of examples of good practice. The challenge is to ensure that that good practice travels better than it perhaps does at the moment.

That is it in a nutshell—we are working to assess and understand the level of need and to ensure that we meet it. With the exception of situations where there is a comorbidity, CAMHS is not the appropriate pathway for a neurodevelopmental condition.

So that there is no doubt, I reiterate that I fully recognise the importance that is placed on assessment and diagnosis for a range of reasons, but there is a real opportunity for need to be met without diagnosis. Diagnosis should not be a requirement for needs being met, notwithstanding the points that the committee has taken in evidence and raised today about concerns that diagnosis has been used by authorities as a gate-keeping tool. That should not be the case. Needs should be met.

The point about the exercise that has been undertaken with health boards and local government is for us to utilise the data that is available so that we have a fuller picture of need. That can help us to ensure that the national specification is implemented and that need is met.

Good morning. I welcome the opportunity to speak to the committee and to contribute to its important inquiry.

Across the United Kingdom and globally, we are witnessing a significant and growing demand for neurodevelopmental support and diagnosis. That is not unique to Scotland—it is an emerging issue in many parts of the world. Increasing pressure is being placed on systems that were not designed to manage such a scale of demand.

The issue is complex. Neurodevelopmental needs span health, education and social care, and they are shaped by a wide range of factors. A traditional national health service waiting list approach is not sufficient. What is needed is a co-ordinated multi-agency response that focuses on timely, needs-based support and reflects the evolving nature of neurodevelopmental needs and the diversity of individual experiences. The Scottish Government is committed to improving access to timely, needs-based support for neurodivergent people.

For children and young people, our work is guided by the national neurodevelopmental specification, which promotes the provision of early, needs-led support through the getting it right for every child principles. However, rising demand has made implementation challenging. We have invested in pilots, digital tools and family support, and in our work to take forward recommendations to improve implementation, we are being supported by a newly established cross-sector task force.

For adults, we have accepted recommendations from the adult neurodevelopmental pathways pilot, and we continue to invest in support. Our autistic adult support fund and the work of the National Autism Implementation Team are helping to reshape services and improve outcomes.

We also recognise the need for better data to inform planning and improvement. Work is under way with health boards and local authorities to get a clearer understanding of service demand and provision.

Finally, I want to stress the importance of finding consensus on the way forward. The committee’s inquiry is a vital opportunity to do that, and I thank all the families, professionals and organisations that have shared their experiences and insights. I very much look forward to considering the recommendations that the committee makes as part of the outcome of the inquiry.

We have the national specification for children and young people. We conducted the implementation review jointly with COSLA and updated the Parliament in June about that. The cross-sector task force has been established; it met for the first time earlier this month. There will be an additional £500,000 of investment this year, and, as Stephen McLeod has set out, the task force will have short-term, medium-term and long-term actions that aim to improve the experience of children and young people.

With regard to adults, we previously accepted the recommendations of the pathways report that was conducted by the National Autism Implementation Team, and we are working with health boards and partners to ensure that those are delivered.

On being able to have a clearer understanding of the picture, on-going engagement about data is taking place with health boards and local authorities. I appreciate that the convener said that we will touch on that later.

Your question raises an important point, convener. At the outset, I stress that I fully recognise the importance of assessment and diagnosis, not only for individuals but for families, in order to understand need and for reasons of identity and validation; in some circumstances, assessment and diagnosis are important with particular reference to medication in relation to ADHD. We want to provide a needs-led approach, recognising that, consistent with our national specification for children and young people, a diagnosis is not a prerequisite for accessing support—and nor should it be. As the committee has been told in evidence, particularly from professional organisations, although we have a needs-based approach on paper, the understanding, perception and experience are that a diagnosis is required to access support. That should not be the case.

We set out the national specification back in 2021 and undertook a joint review with the Convention of Scottish Local Authorities. I updated Parliament just prior to summer recess, when I announced the establishment of a joint task force, bringing together health and education and backed up by an additional £0.5 million of investment in this financial year. As I touched on in my opening statement, the task force is to take forward an approach that is consistent with GIRFEC and recognises that support should be available without a diagnosis. That approach also recognises the circumstances in which a neurodevelopmental condition can present itself and the needs that have to be met in those circumstances—for example in an educational setting—and that small adjustments are often all that are required to significantly improve an individual’s circumstances. That is part of the work that we are doing.

As I said, it needs to be recognised that the level of demand, not only for children and young people but for adults, is such that the conventional NHS waiting list approach is not sufficient. The absolute priority is an approach that responds to need. Notwithstanding that, we continue to invest in our health and social care services, and we do so with the intention of ensuring that a diagnosis can be provided, where required, as part of a needs-based response.

I recognise the importance that many people will place on the independent sector. Those who have the means to do so may choose to exercise their right to utilise it.

When it comes to the interaction with the NHS, those decisions are ultimately clinical decisions to be taken by the clinician who is in charge of the patient’s care. That is a well-established and well-understood principle. However, where there can be variation with regard to, as we have described, the shared care arrangements in different parts of Scotland, we are engaging with the Royal College of General Practitioners to deepen understanding of the issue and consider potential options or responses to the situation. I stress that I recognise the primacy of the decision making of the relevant clinician.

The review set out a range of actions in the short, medium and long term that will provide a means of assessing progress, and the task force is taking forward that work.

On the additional resource that was committed to, I hope to be in a position relatively soon to set out how that will be deployed. I undertake to keep the Parliament informed of the progress that is made.

As I said earlier, the task force met for the first time earlier this month. I am happy to continue to engage with the Parliament to ensure that it is kept up to date as and when outputs are articulated.