9. Short Debate: Pathways from referrals to diagnosis and beyond: the challenges of living with autism and other neurodivergent conditions

Part of the debate – in the Senedd at 5:45 pm on 11 May 2022.

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Photo of Julie Morgan Julie Morgan Labour 5:45, 11 May 2022

So, firstly, let me restate my commitment to making sure that all neurodiverse children, young people and adults, along with their parents and carers, have access to the services and the care they need. There is a lot to do, I absolutely acknowledge that, but we have taken big strides in moving forward, and this includes the success of the integrated autism service that is providing assessment and support services for adults and help for families, and this is supported by £3 million of Welsh Government funding each year.

Our programme for government commitment to introduce a statutory code of practice on the delivery of autism services has also been achieved, with the code coming into effect on 1 September last year, and we are seeing a clear commitment from statutory organisations to embrace the code and proactively improve services and support. Our national autism team is working directly with regional partnership boards to help them develop an autism infrastructure and appoint an autism champion role in each area. The code has given us the foundation from which to make a real change in improving services for autism and other neurodevelopmental conditions.

During stakeholder engagement when developing the code, we listened when we were told that despite the progress made in autism services, many people with other neurodevelopmental conditions and their families and carers are still struggling to access the support they need, even though their needs were often similar or were co-occurring with autism. This situation was echoed in my meeting with parents of children with ADHD and Tourette's syndrome.

So, this is why we are widening our approach, from a focus on autism to seeking improvements across neurodevelopmental conditions, so we now have a dedicated policy team working across health and social care, linking closely with education colleagues. Our national autism team is also expanding its remit and expertise to provide advice across neurodevelopmental conditions, and we want to make sure that the progress that has been made with autism is extended to the other conditions and that they all work together, and I think that's a really important development. We know, and it's been mentioned in the debate by several Members today, that assessment services are experiencing increasing demand with long waiting times across children and adult services, and for some conditions, new service pathways are needed. So, to better understand this complex area and to identify options for improvement, we commissioned a demand and capacity review of neurodevelopmental services last year and the authors have now presented their findings to me. I'm currently considering the final report from the review, which has provided strong evidence for the need for a programme of improvement to put in place sustainable services that have clear and easy access. And I think Hefin mentioned the importance of the support that's needed while you wait for a diagnosis, and I feel that that is absolutely key.

I'll come back to colleagues shortly when we publish the review and I will be making an announcement about the immediate medium and long-term actions we'll be taking to support improvements. This will include urgent action to reduce the pressures on assessment services and to put in place early help and support for families who need help now.

It's important to acknowledge that neurodevelopmental services reform will build on the successes of the Together for Children and Young People programme and its neurodevelopmental work stream, which comes to a close at the end of September this year. I must thank those involved for all they've done. We're working to ensure there is a smooth transition from the programme to ensure that all of the good practice is captured and that the strong relationships built by the programme team are maintained and further strengthened.

Future policy and delivery will be co-designed with individuals and families with lived experience of neurodevelopmental conditions. We recently issued a survey through our networks and social media to gather current experiences of those who are seeking access to assessment and support on a waiting list or who have had contact with services. The survey was live for over eight weeks and we received over 370 responses. We are currently reviewing the feedback received, and an early theme identified reinforces the need for better pre and post-diagnosis support, something that is reflected in the findings from the demand and capacity review. 

Another key area of feedback from parents is support in schools, and that has been mentioned, and Hefin mentioned that very powerfully today. I was very struck by the figures: 76 per cent of autistic children bullied in school; 20 per cent exclusions. I really feel that we have to address this issue. The role of education in supporting neurodiverse children and young people is absolutely crucial. We're working closely with education colleagues, who are delivering improvements through the additional learning needs reform, to ensure the needs of neurodiverse children and young people are recognised, and that staff have knowledge and skills to support them. I was so struck by what the parents in the group I met with children who had ADHD said, and also talking about how crucial the way that the school responded to those children is, and the difference it made to their lives. 

I'm looking forward to next week, visiting two schools in the Carmarthenshire area who are working hard to support neurodiverse pupils to maximise their potential and widen the opportunities for them. One of the schools has recently received an award from the ADHD Foundation for its work, and we want to share the experience of that school, because I think there are many ways that schools could shift towards being ADHD-friendly; it would make such a huge difference. 

And I also want to recognise the role of the third sector, who've been instrumental in the progress we've made with the autism code of practice, and will have a pivotal role in our neurodevelopmental reform, particularly in providing both pre and post-diagnosis support services.

So, in conclusion, by the end of this Senedd term, we want to be successful in reducing the pressures impacting on neurodevelopmental services, and ensure families can access early help and support quickly, as well as timely assessments. So, we want neurodiverse children, young people and adults to feel supported and equipped to meet the challenges of daily life now and in future years to come. I'd like to end again by thanking Hefin for bringing this debate, and for Laura Anne and Mark's contributions. Thank you. Diolch.