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 4:08 pm on 25 May 2022.

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Photo of Paul Davies Paul Davies Conservative 4:08, 25 May 2022

It gives me great pleasure to speak in support of this particular petition. Now, the organiser of this petition is Helen Reeves-Graham, who is a constituent of mine and is a formidable campaigner for improving services for people with Tourette's syndrome in Wales, and I'm proud to have people like Helen living in my constituency.

As the Chair of the Petitions Committee said, it's thought that around one in 100 children in Wales are living with Tourette's syndrome, and the condition shows itself differently in different people. One person may have involuntary head jerks, another may have vocal tics, and so there's no one-size-fits-all snapshot of how Tourette's syndrome looks. As we know, symptoms can range from mild to severe, and, in the case of physical tics, these symptoms can sometimes be painful. Now, living with a complex condition like Tourette's can be overwhelming, particularly for children, and so it's absolutely crucial that there is access to specialist care within Wales. Some parents are turning to the internet to help find information on how best to support their children with Tourette's, and the reliability of some of that information is, of course, questionable. But it really shouldn't have come to that. There should be support services in Wales available from the onset of diagnosis, and it's really worrying to read reports of children and their families feeling alone after being diagnosed, and we have to take action now to ensure that this does not continue.

Dirprwy Lywydd, we know that more and more children across the UK are being diagnosed with tics and Tourette's, as experts at Great Ormond Street Hospital in London have recorded a rise in the number of children and teenagers experiencing tic symptoms and tic attacks since the beginning of the pandemic. Now, before the COVID pandemic, the Great Ormond Street Hospital would normally receive four to six referrals a year, but, by January 2021, they received three to four referrals per week. And so, as the number of referrals grows, the demand for more support and understanding does too, and so it's vital that the Welsh Government intervenes and ensures that children have access to vital physical, mental and emotional support here in Wales. Not accessing the appropriate medical care and support can lead to long-term mental health problems, and, as the petitioner has rightly highlighted, people with Tourette's syndrome can have difficulties with anxiety, sleep, rage and social isolation. Therefore I sincerely hope that the Welsh Government will reflect on the very serious impact that not having support and services is having on children living with Tourette's syndrome in Wales and their families.

Now, as the chair of the Petitions Committee has already said, the Welsh Government is working to improve assessment and support services for all neurodevelopmental conditions, and that work will be informed by the outcomes of a demand and capacity review. I hope, in responding to this afternoon's debate, the Deputy Minister will give us an update on that specific work. Nevertheless, I'm really pleased to hear that the Deputy Minister has met with Helen Reeves-Graham to discuss what the Welsh Government can do better to support families here in Wales, and, whilst that engagement is extremely positive, time is of the essence for children living with Tourette's, and the longer that they go without support and services, the more serious the impact is on their lives. That's why we need to see action now, and why we need to see Tourette's being prioritised and not simply grouped with other neurodevelopmental conditions. A one-size-fits-all approach just won't adequately address the needs of people with Tourette's. Instead, the Welsh Government must get on with the job of establishing a specialist centre for people living with Tourette's syndrome in Wales so that they can access support, therapy and, indeed, the care that they need.

People living with Tourette's in Wales, and in particular children, shouldn't have to travel across the border to access specialist treatments, and, at the very least, the Welsh Government should commit to providing more aftercare and support post diagnosis. The Welsh Government has said that regional partnership boards are rolling out a new framework to improve access to the right support, and I hope that, in responding to this afternoon's debate, the Deputy Minister will tell us more about how that work is also progressing.

So, in closing, Dirprwy Lywydd, can I pay tribute to the hard work and determination of Helen Reeves-Graham in circulating this petition and ensuring that Tourette's syndrome is on the Welsh political agenda? Your voice, and the voice of families across Wales living with Tourette's syndrome, has been heard. Therefore, Dirprwy Lywydd, we have an opportunity to get this right, and I sincerely hope the Welsh Government will work to ensure that children living in Wales with Tourette's will be able to access specialist services in Wales sooner rather than later. Thank you.