Hansard

I thank Sarah Boyack for bringing this important debate to the chamber. I am aware of her long-standing support for and commitment to Tourette Scotland, and I am delighted to make a contribution on the subject.

For decades, Tourette Scotland has been a lifeline for many, providing support, advocacy and education for individuals and families who are affected by Tourette syndrome across our country. From peer support groups to school training sessions, its work is tireless and transformative. Despite those efforts, we know that many children and young people with Tourette syndrome still face significant barriers, particularly in education.

My eldest son, Hugh, suffered from a facial tic. I know that, at the time—from his mid-teens up to his late teens—it was very distressing for him. However, my wife, Jackie, who is a councillor in Dumfries and Galloway, told me that, when Tourette Scotland delivered training in a local school, only a handful of staff turned up. The following statistics suggest that such training should perhaps be mandatory.

Recent data suggests that around 1 per cent of children and adolescents globally are affected by Tourette syndrome. In Scotland, that translates to thousands of pupils, many of whom also live with co-occurring conditions such as attention deficit hyperactivity disorder, anxiety and obsessive-compulsive disorder. However, according to Audit Scotland, more than 284,000 pupils—40 per cent of our school population—require additional support for learning. Despite that, funding and training remain inconsistent and, in many cases, inadequate. That is not just a failure of policy but a failure of compassion.

Bravery can take many forms. It is not always about physical endurance. Sometimes it is about confronting and overcoming a mental condition. Performing live before tens of thousands of music fans at Glastonbury takes incredible courage at the best of times, but when someone takes to the stage months after revealing that they have Tourette syndrome takes that courage to a completely new level.

Step forward, Scots singing sensation, Lewis Capaldi. He admitted publicly that stress and anxiety can worsen the tics that are now a constant part of his life, albeit he is learning to manage them. Few will forget watching him during his 2023 gig, when he stood alone on stage, unable to sing the words to his classic song, “Someone You Loved”. If he was looking for an answer, he only had to listen as the crowd helped him to finish the song. That moment was powerful, not just for him but for everyone living with Tourette syndrome.

Capaldi chose to go public to prevent speculation, such as people thinking that he was on drugs before shows. Before his diagnosis, he feared that he had “some horrible degenerative disease”. Since then, he has undergone treatment and learned coping strategies. Importantly, he has become an advocate, inspiring thousands and highlighting the condition that affects nearly 300,000 people in the UK.

Similarly, we have just heard the remarkable story of John Davidson MBE from Galashiels. Many will remember the 1989 documentary, “John’s Not Mad”. John was just 10 when his tics first appeared. He was misunderstood, bullied and even hospitalised. He faced unimaginable challenges. Yet, through resilience and optimism, he transformed his life and became one of Scotland’s leading voices for Tourette awareness.

His new book, “I Swear: My Life with Tourette’s”, has been turned into a feature film, as we have heard, and shines a light on the lived experience of those with Tourette syndrome and how it challenges stigma and misconception. I know that Rachael Hamilton attended the cinema in Gala to see it; everybody was laughing and crying, and it received a huge round of applause at the end.

We must do more. We must have national guidance and consistent training for teachers and school staff. We need Tourette-specific content in our additional support for learning framework and mental health strategies. We must ensure that communication is inclusive, through British Sign Language and other accessible formats, because those who have Tourette’s often have co-occurring conditions.

Crucially, we must work with organisations such as Tourette Scotland to develop a national plan. That means increasing funding for support, better integration across education, health and social care and a public awareness campaign that reaches every corner of Scotland.

Let us honour the work of John Davidson, Lewis Capaldi and the many families who have fought for recognition, and ensure that every child with Tourette syndrome is supported to their full potential.