6. Debate on petition P-06-1249: Provide a clinical pathway, medical care, and specialists for people with Tourette’s syndrome in Wales

Part of the debate – in the Senedd at 4:27 pm on 25 May 2022.

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Photo of Julie Morgan Julie Morgan Labour 4:27, 25 May 2022

Diolch, and I welcome this debate this afternoon and thank Members for their comments. As Jack Sargeant said in his introduction, today is timely as we are currently in the middle of Tourette's Awareness Month, and the greater awareness we can get, the better.

I've recently met, last week in fact, with Helen and with other parents of children with tic disorders and Tourette's syndrome, and this was the second time I'd met this group of parents. In these meetings, parents told me about the struggles they've experienced trying to access support for their children, and Members today have described some of those struggles that people have had to go through. And the issues they raised, together with their strength and determination, are absolutely at the forefront of my mind as we strive to make positive changes.

As, I think, Hefin said, 'Listen to parents first,' and that's what I'm doing, and I think nobody can tell us better than parents themselves what the situation is. And I've listened carefully to what Members have said about the individual experiences of their constituents, and of course I've read the letter that Hefin gave me about Ben from the Vale of Glamorgan, in Jane Hutt's constituency.

So, firstly, I must say that I'm committed 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 that they need. A sustainable service is built on good foundations and the work that's been done to deliver the statutory code of practice on the delivery of autism services has given us a solid base to make real change in improving services for all neurodevelopmental conditions, including Tourette's syndrome. I think services for autism have definitely improved, but we've got to make sure that the other conditions now are improved as well.

When we were talking to stakeholders when we were developing the autism 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-occuring with autism, as has already been mentioned here this afternoon. And these messages were echoed in my conversations with parents of children with Tourette's syndrome. So, that's why we are widening our approach from an autism focus to seeking improvements across neurodevelopmental conditions, such as Tourette's syndrome and also ADHD. We have a dedicated policy team, working across health and social care, linking closely with departments across Welsh Government, such as education. Our national autism team is expanding its remit and its expertise to provide advice across neurodevelopmental conditions.

Members will be aware, and I know it's been mentioned several times this afternoon, that we commissioned a demand and capacity review of neurodevelopmental services last year to better understand the increased waiting times and the pressures on the neurodevelopmental service and to try to identify options for improvement. After receiving a presentation on its findings, I'm currently considering the final report from the review. The final report will be published shortly and my intention is to make an announcement about the immediate, medium and long-term actions we'll be taking to support improvement. 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. I've been so struck in my discussions with the families about how desperately they need help and how difficult it has been for them to access that support when they realised that there were issues that had to be dealt with. The third sector will have a key role in providing support to families and we've started working very closely with organisations such as Tourettes Action UK on this. 

In conclusion, I can assure Members that we're committed to delivering a sustainable neurodevelopmental service for Wales that will essentially be co-designed with individuals and families with lived experience of these conditions, including Tourette's syndrome. I will be making an announcement about our proposals as soon as I'm able to do so.