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 4:15 pm on 25 May 2022.

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Photo of Hefin David Hefin David Labour 4:15, 25 May 2022

I had the pleasure, in advance of my short debate on autism, ADHD and Tourette's two weeks ago, of speaking to Helen Reeves-Graham on the phone and hearing her story personally, and it demonstrates the difficulty that exists in this community. And particularly one of the things I mentioned in my debate was feeling like a pinball. As a parent of someone with autism, as Jack has kindly mentioned—although he did also call me a celebrity, which I don't think I agree with—the challenge of being a parent of a child with autism is strong, and you feel like a pinball bouncing between different specialists. And the Royal College of Psychiatrists have told us that 20 per cent of people with TS also have ASD. That leaves 80 per cent who don't have ASD and therefore don't have access to that autism pathway.

And I'll come back to that in a second, but I've had an e-mail from Nicola Hall, who is a constituent, who demonstrates exactly what we mean by this pinball effect. So, this is about her son.

'We first noticed Aled's verbal tics in February 2020. He was four years old at the time. We reported this to the GP, they confirmed this was common and would probably go away on its own. "Come back after 12 months if they're still present", they said. Over the 12 months, his tics became worse, were constantly changing and now included motor tics. We went back to the GP, we were referred to the SPACE panel. They referred us to early years. I pleaded with SPACE for a CAMHS referral. They refused. After becoming part of the South Wales Tic and Tourette's Support Page, talking to other families and researching, we knew CAMHS was where we needed to be seen. Early years could not help us and referred us back to SPACE. SPACE referred us to PCMH, where we were assessed and taken on with the promise of six virtual sessions with a psychiatric nurse. At session three, we were informed by the nurse there was nothing more that could be done and she would refer us to CAMHS. We are now on the waiting list for CAMHS. The frustration, as I'm sure you can see, is that we asked to go there initially and this time has been wasted.'

Now, I've benefited from going to an educational psychologist, school, speech and language support and various different places, but each time the waiting list increases and the end outcome becomes further away, which I mentioned to the Minister yesterday. In the case of Tourette's, where less is known about that condition, that journey becomes even more complicated, and sometimes some of the places you're referred to may not be the right place in the first instance. And one of the things that Nicola said to me is that parents know best. Listen to parents first, because they spend the most time with their children and theirs are the opinions that need to be listened to first and foremost. Now, there are waiting delays in the system, we know that, but they are being exacerbated by that pinball effect.

And that is when you can get treatment, because I've had other correspondence from Byron Thomas about his son. His son was 13 before he had treatment, when they knew that there was an issue when he was five years old.

And I mentioned autism, and I said that people on the autism pathway have a clearer pathway, and that is undoubtedly the case, but I've had a letter from Sally Smith, who says that she keeps a diary of her son's tics and symptoms, went exactly on the same path, bouncing like a pinball, like Nicola, and it took one and a half years for her son to be diagnosed after that period of time. But what she said to me as well is that the only support he receives is because of his autism; Tourette's support is non-existent. So, there are even issues for those of us who are parents of children with autism, that that pathway still is very confused and unclear. 

And finally, I do want to mention that I've had from Jane Hutt—. As she's a Minister, she can't speak in this debate, but she's sent me the details of her constituent whose son, Ben, has issues. Jane has passed it to the Minister, but I promised I would raise this in the debate as well. And, Minister, there we go, that's the e-mail itself. There we are. And I think it's really important that the Deputy Minister hears these stories. And I'd say that we have the right person in this Deputy Minister, because I have been in meetings with parents with the Deputy Minister, and witnessed her taking action. She really does want to resolve these problems. There are many complex parts, complex moving parts, to this, but there are things that can be done. And just to finish, the most important thing I think we can do is listen to parents and those experiencing Tourette's.