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 4:12 pm on 25 May 2022.

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Photo of Luke Fletcher Luke Fletcher Plaid Cymru 4:12, 25 May 2022

Diolch, Dirprwy Lywydd, and firstly I'd like to thank Helen for submitting this petition. What it calls for is exactly right—Tourette's is overlooked by many and is viewed by most as a condition that means that you just swear uncontrollably, and I like many others am guilty of previously thinking that, but there's a lot more to it. It's a neurological condition that can be quite painful. That's why it's important that diagnosis is given and that medical care and support follows. But in Wales there currently is no clear clinical pathway to assess specialist provision and care, especially for children. There is only one Wales-based consultant specialising in Tourette's, but only in adults. This is very problematic. The tics that people develop are often most severe during childhood and adolescence, and, as a result, can impact on what we all recognise and know is a critical period in human development and socialisation.

The reality is that delaying until adulthood to receive a diagnosis can cause a whole load of issues. Studies have shown that receiving a diagnosis of Tourette's can help individuals to understand their own behaviours and help them to explain their behaviours to others. Some report that without their diagnosis they felt more at risk of developing metal health problems, and it has been proven that mental health issues amongst those with Tourette's are more likely to develop. Alongside mental health issues, the majority of respondents to the Tourette's syndrome impact survey study, which included both children and adults, reported at least one tic that caused physical pain and damage. That's why access to occupational therapy that can address pain management, as well as speech difficulties and sensory issues, is vital. As well as opening access to services and support, receiving a diagnosis allows people as well to meet others with Tourette's, therefore helping them to develop a sense of community and belonging that they might not have otherwise.

Going back to an earlier point I made, there's a lot more to Tourette's than we might initially think. There's a lot to be said about education, as well as how we talk about it and address the stigma surrounding it. I think this petition has already played a part in doing that, and Helen should take pride in that. So, again, thank you to Helen for highlighting this issue with the committee, and I look forward to seeing how the Government responds to the petition and what it calls for. Diolch.