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 4:24 pm on 25 May 2022.

Alert me about debates like this

Photo of Buffy Williams Buffy Williams Labour 4:24, 25 May 2022

Diolch to Helen Reeves-Graham for starting this extremely important petition. As Jack has stated, we know that Tourette's affects one in 100 children, so to see over 10,000 signatures in support of providing a clinical pathway, medical care and specialists for people with Tourette's syndrome in Wales comes as no surprise. The Royal College of Psychiatrists say that up to 85 per cent of people with Tourette's syndrome will also experience co-occurring conditions, including attention deficit hyperactivity disorder, obsessive compulsive disorder and autism spectrum disorder.

During my time in education, I worked with a number of children who were diagnosed, and, in some cases, undiagnosed, with Tourette's syndrome. I witnessed first-hand how living with Tourette's impacts on the person and family dealing with this condition. It was distressing to see the struggle of a small child on a daily basis fighting with this condition, and it was just as distressing to hear the parents beg for help and support.

The everyday scenarios that we take for granted as fairly easy tasks can be very difficult for children suffering with Tourette's—mingling with peers in a class and during break, completing schoolwork. Children with Tourette's are expected to catch the school bus with other children with just one carer, when most parents and guardians will tell you that children with Tourette's will need a carer just for them. It can be mentally and physically exhausting for all involved.

The lack of awareness in Wales of Tourette's syndrome even makes things like going shopping or walking through the park a daunting experience, knowing that eyes will likely be following you. We need to make sure that people with Tourette's in Wales feel supported, not ridiculed. The added pressures of searching constantly for help and support, not being able to access the correct medical care and facilities, can lead to long-term mental health problems. Tourette's isn't just swearing. It can be exhausting. Through involuntary movement, which is painful and debilitating, it can lead to difficulties with sleeping, anxiety, social isolation and bouts of rage. It's a complex condition, and should be treated as such.

We need to do better at, firstly, diagnosing the condition, raising awareness of the condition, and ensuring that the correct treatment and support is available for individuals, families and carers to access. I wholeheartedly support this petition and will work to make sure that those suffering with Tourette's in Wales feel supported.