Hansard

I feel privileged to open this debate on a condition that affects many people in our communities. It is difficult for us to imagine what it is like for your body to act without your say-so and for words to leave your lips that you did not intend to say, but that is the daily reality for tens of thousands of Scots.

Although it is estimated that one in 100 Scots may have Tourette syndrome, for too long it has been an undiscussed and underresourced condition. An example of those barriers is clear in the case of my constituent Finn. He was prescribed comprehensive behavioural intervention for tics—CBIT—therapy to help with his Tourette’s, only to discover that no one in north Edinburgh was trained in how to do it. It got worse, because on inquiring whether he could receive the treatment anywhere else in Scotland or in Edinburgh, he was told no. It surely cannot be, in a country as well resourced as ours, that patients are still unable to receive the treatment that is recommended by child and adolescent mental health services.

Far too many people who face Tourette’s go through the process of diagnosis only to find that support on the other side is lacking. That is equally true for their families. It is hard for parents to know, when their child is at an early stage, whether they are suffering from Tourette’s and how to cope with a child who is not fully in control of what they say or what their body does. Far too many parents feel helpless in trying to balance all the life changes that are required with a Tourette’s diagnosis. Often, one parent has to give up work to look after their child with Tourette’s due to disruptions at school, leaving a family with less income and stalled careers.

Wonderful organisations such as Tourette Scotland provide a range of services and support to parents and to people with Tourette’s. My constituent Tyler would not be where he is today without the support of Tourette Scotland. In his second year at school, he was noticed by someone who was running the first chances project. She helped Tyler to find a goal and showed him that he is able to achieve the things that others can. With the right support, Tyler was able to thrive, first at college, and then at university, where he graduated with a joint degree. That was only thanks to the amazing support and grant funding to help manage his Tourette’s. This summer, Tyler went to the USA to take part in Camp America for three months, helping to support kids with disabilities as a camp counsellor.

Tyler’s story should stand as an example of how Tourette’s does not have to be a barrier to life. With the right support, those with the condition can achieve great things, but it should not only be the role of third sector organisations or the national health service to provide that support. We need to foster an environment that allows those with Tourette’s to thrive, wherever they are in life. I am pleased that my office has already been in touch with the Scottish Parliament’s engagement office to introduce it to Tourette Scotland, in a bid to make our Parliament a more Tourette’s-friendly environment. In many environments, Tourette’s can still be a challenging hurdle to overcome.

A constituent of mine, Alan, shared the experience of his son, Frankie, with me. Frankie had first-hand experience of the misunderstandings that Tourette’s can bring in education settings. He was often punished for things that were outwith his control, as no one recognised his condition. It is hard to state how disruptive that can be for a child’s education and their confidence with managing Tourette’s. It can have a major impact on a child’s mental health due to the punishments that they receive for their uncontrollable actions, or the humiliation that they are subjected to because of a lack of understanding of the condition. Even when a diagnosis is made, schools are often ill equipped to deal with it effectively due to a lack of training and resources. However, it does not have to be that way.

When I spoke to Alan about his son, he told me about the practical steps that he believes are vital for ensuring that those with Tourette’s receive the necessary support. There should be clear National Institute for Health and Care Excellence and Scottish intercollegiate guidelines network guidance for Tourette’s diagnosis; a national training programme for schools, so that school staff and teachers are properly equipped to support those suffering from Tourette’s; and early recognition and intervention in schools for students, so that we can support kids from an early age to ensure that they have positive outcomes despite their condition. Those are not fairytale policies—they are achievable. We just need the political will to achieve them.

I am glad that we are joined in the public gallery by constituents who have Tourette’s. Every single one of them will have had to overcome challenges relating to their condition. It is vital that we use that momentum to deliver lasting change so that, for future generations, a Tourette’s diagnosis does not need to carry the burden that it once did.

Last week, I went to see the wonderful film “I Swear”, which illustrates the challenges of living with Tourette’s across the world. It is emotional and inspiring, and gives everyone an insight into the challenge that people with Tourette’s face. I think that everyone should go and see it, because it is a call for action. No child should see their educational attainment crumble in front of them because of a condition that they cannot control. No parent should have to give up work because the education system is unable to deal with their child’s Tourette’s. No patient should have to go through the ordeal of a diagnosis just to find that treatments are thin on the ground or non-existent.

That is why I will finish by calling on the Scottish Government to work with Tourette Scotland to create a national plan to increase funding for support services and to raise awareness across all parts of our society. We are not asking for utopia—rather, it is the standard that Tourette’s patients and their families should expect and, more importantly, deserve.