Hansard

I thank my colleague Sarah Boyack for bringing this important and, indeed, milestone debate to the chamber, as Christine Grahame has pointed out.

I also thank Tourette Scotland for providing support, advocacy and education for people living with Tourette syndrome and their families, including in my region of Glasgow.

As has already been said, with one in 100 school-age children affected by Tourette’s, the issue affects every part of society. However, as yet, it is not fully understood. That is why debates such as this are important.

One thing that is not commonly understood about the syndrome is that it rarely comes alone. As other members have mentioned, most people who have a Tourette’s diagnosis also have other complex conditions, such as ADHD, OCD, anxiety or autism spectrum disorder, to name but a few. As with many conditions, it can be difficult for people to consider that more than one issue can affect people at any one time.

We are, of course, all multidimensional, and we need our systems and services to recognise and support that in all of our diversity. That includes the education system. However, for young people with Tourette’s, including in the Glasgow region, the system falls below what we would expect. Some pupils do not get the additional support in schools that they need, which has a huge impact on their life.

Although many young people with Tourette syndrome have no additional difficulties at school, some may struggle. The form that that takes can be wide-ranging and includes the discomfort of holding tics in, which uses up a lot of energy and concentration and can distract from school work. It can also make it really difficult to maintain concentration. It is crucial that we support young people to relax, to be themselves and to help others to understand when and how their condition affects them, so that they get the best possible chance at learning.

There are also specific adjustments that can be made at school that will help pupils. Writing can sometimes take a little longer for those with Tourette syndrome, and simple solutions can help, such as the provision of worksheets, rather than having to copy things down, or a list of tasks, rather than having to remember what is being asked. Assistive technology can help, too.

Tourette Scotland and others have highlighted those issues and believe that there is an urgent need for national guidance and consistent support for teachers and school staff to ensure that pupils with Tourette syndrome are supported to reach their full potential. The Scottish Government is reviewing wider additional support for learning, so perhaps it could consider specifically the needs of that group of young people when it does so.

Another solution to support people who live with Tourette syndrome is inclusive communication. That must be a feature of all of our Government’s work, so that everyone can enjoy the right not only to learn but to participate in every aspect of society. If the Government were to agree to the calls from Tourette Scotland to deliver a national plan for support services and to raise awareness across education, health and social care and the wider public, inclusive communication could be a key feature of such a plan.

We are shining a light today on the experience of families who are living with Tourette’s, not just because of the work of organisations such as Tourette Scotland, the campaigners and activists who we have heard about today and my colleague Sarah Boyack, but because of the release of the new film “I Swear”, which sets out, as films so often do, to help others to see the beauty in difference, as well the challenges and stigma that surround it. Such films are important—I want to see more and more films on our screens that tell the story of disabled people and people living with conditions such as Tourette’s.

I thank not only the film producer, but the executive producer, John Davidson, who the film is about, for making the film and for sharing the story far and wide. It is worth noting that the actor Robert Aramayo, who plays John Davidson, said that John was his most important resource in playing that role. However, his importance in the role of executive producer extends beyond that, because having more people living with those conditions both on screen and working in screen is crucial. On this occasion, the involvement of the Tourette’s community in the film shows real leadership by those who made it.

I will end with words from John Davidson. In a BBC article about the film, John said that the

“film raises awareness but ... also gives people the grit and determination to keep going”.

He then asks people to

“fight on for their kids, go to schools, go to your local MPs”,

because

“We need people to stand up and listen.”

His words have now been said in Parliament and are on the parliamentary record. It is incumbent on us all to do as he asks—to stand up and listen, so that people can understand a little more about Tourette syndrome and how we can all work to improve the lives of people who are living with it.