Official Report 740KB pdf
The next item of business is a members’ business debate on motion S6M-19389, in the name of Sarah Boyack, on supporting Tourette Scotland and greater awareness and inclusion for people with Tourette syndrome. The debate will be concluded without any question being put.
Motion debated,
That the Parliament recognises what it sees as the vital work of Tourette Scotland in providing support, advocacy and education for individuals and families affected by Tourette syndrome across Scotland; welcomes the release of the new documentary film, I Swear, which shines a powerful light on the lived experiences of people with this condition and challenges and stigma surrounding it; notes, with concern, reports from parents, educators and young people, including in the Lothian region, that many pupils with the condition are not receiving adequate educational support or understanding in schools; further notes the view that there is an urgent need for national guidance and consistent training for teachers and school staff to ensure that pupils with Tourette syndrome are supported to reach their full potential; notes the calls for the inclusion of Tourette syndrome-specific content in the Scottish Government’s wider Additional Support for Learning (ASL) framework and mental health strategies; highlights what it sees as the importance of British Sign Language (BSL) and communication inclusion guidelines to ensure accessibility and understanding for those with the Tourette syndrome and co-occurring conditions, and notes the calls on the Scottish Government to work with Tourette Scotland to develop a national plan, increase funding for support services, and raise awareness across education, health and social care and the wider public.
12:51
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.
12:58
This is the first time in my 25 years in the Parliament that Tourette’s has been discussed. I thank the member for securing the debate in the chamber, and I welcome those in the gallery who are listening to this significant—I would add milestone—debate on Tourette’s.
The main symptom of the syndrome is tics, which can be vocal or motor. They can include whistling, sniffing or clearing your throat, repeating a sound or phrase and occasionally swearing. A person cannot control them—they just happen. The syndrome usually develops in early childhood, and it is even estimated that one in every 100 Scots has Tourette’s. Sometimes it is so mild that it cannot be identified. There is no known cure, but the condition can be managed. Most important of all, I believe, is for the public to be educated to understand the condition so that we can remove the stigma.
John Davidson, who lives in Galashiels, is a constituent of mine who has Tourette’s. I first met John—although he will not remember it; I do not expect to be remembered all the time—many years ago while visiting Langlee community centre in Galashiels. I was there for a meeting and, in the near distance, I could hear shouting and swearing. Like many, I was taken aback, but then I was told, “It is only John,” and that he had Tourette’s. I had heard of it, but I had not encountered it, so that was a first.
Not much is widely known about the condition even now, so it is much misunderstood. People think that it is a sign of terrible rudeness and express their distaste one way or another, but John has worked his whole life to change that. I think that he became a reluctant poster boy for Tourette syndrome when he was just 16. The little-known condition, which had previously been described as “a wild madness”, caused him to spasm, jerk, swear uncontrollably and shout explicit sexual phrases.
To this day, John still works at Langlee centre. He has also been the subject of not a few documentaries, including the 1989 BBC programme “John’s Not Mad”, which enabled him to bring Tourette syndrome into the living room in a way that had never been done before. That approach has continued, turning into a lifetime of advocacy to further publicise and increase understanding of the condition. In 2002, at the age of 30, he appeared in “The Boy Can’t Help It”; and, in 2009, when he was 37, he was in “Tourette’s: I Swear I Can’t Help It”. Latterly, as has been said, the new film “I Swear”, which is based on his life, is a powerful piece of storytelling that reflects not only the challenges that he has faced but his determination and humour.
John has made Scotland, and, indeed, the United Kingdom, a more understanding place—I hope—for people living with Tourette’s.
John Davidson presented at the famous Wigtown book festival this year. Does Christine Grahame agree that his book, “I Swear”, along with his television work and his appearance at the book festival, are other ways in which to raise awareness of Tourette’s?
They are, indeed.
What John has accomplished was done not for reasons of self-aggrandisement but because of a determination to sweep away the misconceptions around the condition, to help others in the same position and to support their families and the wider public. John’s life is an example of how personal experience shared bravely and honestly can shape public attitudes for the better. I have no doubt that it has been tough for him—and for others—and will continue to be so. He is still dealing with the condition and, certainly, there is still public opprobrium, but the new film that I referred to will ensure that his message reaches a whole new public.
I thank John and others for what they have achieved and will continue to achieve, and I say this: only he could have done it in this way, with determination, dignity, authority and humour.
13:02
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.
13:07
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.
13:12
I thank Sarah Boyack for bringing this debate to the Parliament. I very much welcome the chance to take part in it.
Many people talk about the good old days, when everything was better than it is today and we did not have the problems that we have now. However, I believe that society has come on in leaps and bounds in many areas, particularly when it comes to removing stigma from medical issues and allowing the public to understand the once-not-talked-about conditions that many people suffer from.
As we know, Tourette syndrome is a neurological disorder that causes involuntary, sudden and repetitive sounds and movements called tics. Initial symptoms are typically tics, which can include motor movements such as shoulder shrugs, or vocal sounds such as throat clearing, which usually appear in childhood. The condition can be associated with other conditions, such as ADHD and OCD. Tics can be triggered by different things, including stress, excitement or tiredness. Symptoms of Tourette syndrome usually start around the age of six and can get more noticeable around the age of 10. For some people, the condition improves with age. The syndrome, which is more common in boys than in girls, is not curable but can be relieved by following guidance on wellbeing and relaxation.
Tourette Scotland is a fantastic organisation that informs and supports the estimated 300,000 children and adult sufferers throughout the UK. I completely agree with Sarah Boyack’s motion that people with Tourette’s should be supported in schools as part of the wider additional support needs framework, and I agree with others who have spoken about the lack of guidance and support on the issue. I look forward to hearing the minister’s remarks in that regard.
I mentioned earlier, as have others, the importance of removing stigma from the condition. One way to do that is through the creative arts. High-profile figures such as Lewis Capaldi and David Beckham have been quite open about their condition, which is to be greatly welcomed.
The film that we have all been talking about, “I Swear”, has taken the world by storm. My young constituent Scott Ellis Watson, of Bishopbriggs, is a rising star, and his debut performance in the film has been widely acclaimed. I was proud to lodge a parliamentary motion to congratulate him, and I look forward to presenting him with it shortly. The film topped the box office as the number 1 film in Scotland and across the UK in its first week of release. Much credit is due to Scott’s family—his proud parents, Julie and Jimmy, and his siblings, Stella and John—for their encouragement. The fact that the film, which was produced by StudioCanal, has been such a success is fantastic news for sufferers, because it means that people will better understand what they are going through, which can only be a good thing.
Scott plays teenaged John Davidson and, as has been widely referenced, his performance is so impressive. John’s real-life experiences of navigating daily challenges with Tourette syndrome are powerfully captured in the production. By working closely with John, Scott was able to highlight how the condition can impact young people, both educationally and socially, at a time in their lives when life can be difficult enough. Scott portrays John just as he is in real life—dignified, funny and clever—as we have heard. That is why the film is so important. Tourette’s is a human condition that is often hereditary, and we should know that the people who are affected are just like us, with their own personalities and emotions.
I hope that the debate and that important film will lead to greater understanding of Tourette’s among the public and our educational and clinical institutions. That is the very least that people deserve.
13:16
I am delighted to respond to the debate on behalf of the Government as we discuss the support that is available to people with Tourette syndrome and the awareness of the condition. I thank all members who have spoken for their thoughtful contributions. In particular, I thank Sarah Boyack for this important and—as my colleague Christine Grahame said—milestone motion.
My colleagues have mentioned a number of their constituents. It is heartening to hear about some of the immense successes. For example, Tyler, despite having a challenging diagnosis and there being a lack of support available to him, has achieved huge success. It is inspiring and meaningful for people to hear about such stories. It is also great to be reminded of Lewis Capaldi, David Beckham and other high-profile people who have spoken about their diagnosis, because it is a diagnosis that is widely misunderstood.
The condition has been around for a very long time. Georges Gilles de la Tourette described it in 1885, but it took us until the 1960s and 1970s to understand the neurological processes that influence the condition, instead of seeing it simply as a behavioural condition. Our understanding has continued to grow ever since.
Sarah Boyack made a number of healthcare asks. There are barriers to achieving a Tourette’s diagnosis in Scotland, but the situation has significantly improved recently. There has been a 16 per cent increase in the number of neurology staff at all grades in NHS Scotland over the past 10 years, as well as a 47 per cent increase in the number of neurology consultants, so we are increasing capacity. We have also increased our capacity for imaging, which is part of the diagnosis process, by providing 13 mobile MRI and four mobile CT scanners to help people to get the diagnostic tests that they need. Some boards now deliver additional activity seven days a week, 12 hours a day, to reduce diagnostic waits.
As a junior health minister, I recognise the challenges in accessing treatment. I am keen that we pick up issues relating to access to therapies with colleagues in the health ministry, because that would be useful. I recognise how debilitating Tourette syndrome can be, and I assure members that we are committed to ensuring that everyone who lives with Tourette syndrome in Scotland is able to access the best possible care and support.
The Government has a vision of a Scotland that is free from stigma and inequality, where everyone fulfils their right to achieve the best mental health and wellbeing possible. Some of the stories that we have heard during the debate clearly illustrate that we need to do a great deal more to achieve that vision. I want the stigma around the condition to end, and I want our young people to be supported to reach their full potential. I commend the tireless efforts of Tourette Scotland in supporting people through the physical and emotional challenges that the condition brings.
The Cabinet Secretary for Education and Skills has committed to a review of additional support for learning, and she convened a cross-party round-table meeting to engage with members and local government. They discussed priorities and their thoughts on the scope of the review to improve support for children and young people who require additional support for learning in school. I understand that the education secretary is considering the next steps following that productive session. I strongly encourage Tourette Scotland to engage with the education secretary on that process to ensure that its asks are heard within that general review of ASL.
I very much welcome the minister’s comments about the action that she has committed to. When I left the screening of “I Swear”, I reflected that the condition affects not just the NHS and education but every part of our lives, including transport and the police. There is a big issue around public sector education and learning, and there is also a need to promote wider awareness among the public, so that we all understand the condition and think about what we can do to support people. We also need awareness so that we do not react in a way that makes somebody’s life worse.
I absolutely understand the point that my colleague has made. The film “I Swear” will probably do more for public understanding than anything that the Government can do. I commend the creative effort that went into the film. Sometimes, creative projects such as that can shift public understanding in a way that Government campaigns cannot. I am confident that my colleagues across the Government would be content to engage on the issue to see whether there is more that we can do.
There was record investment—more than £1 billion—in additional support for learning by local authorities in 2023-24. The budget for 2025-26 set out an additional £29 million for additional support for learning, which includes an allocation for local and national programmes to support the recruitment and retention of the ASL workforce, ensuring that we build on the work being delivered through the additional support for learning plan. That funding will be used to improve outcomes for all children and young people with ASN, in line with the Education (Additional Support for Learning) (Scotland) Act 2004, and it will build on existing spend on inclusion to ensure the broadest possible reach.
All teachers undertake ASN training during their initial teacher education, which is a requirement to meet the professional standards for registration with the General Teaching Council for Scotland. We remain committed to exploring options for initial teacher education, and we are considering further steps to improve the support that is available for teachers in other areas.
There is a wide range of free professional learning opportunities set within the Scottish context, which individual educators, establishments, local authorities and unions can use and adapt to suit their context. They are provided by a range of organisations, including Education Scotland, professional organisations, unions, health bodies and third sector organisations. We work with third sector organisations such as the national autism implementation team to produce materials that support professional learning and development for those working with autistic learners.
As Pam Duncan-Glancy said, the condition is often diagnosed alongside others. We are working with partners to develop that work further and to improve the support that is available. Teachers have access to an inclusion, wellbeing and equalities professional learning framework via Education Scotland, as is outlined in the most recent additional support for learning action plan update.
I thank everyone who has contributed to the debate, Tourette Scotland and the individuals who have come along to hear the debate for highlighting the needs of people with Tourette syndrome. We will continue to work with people with lived experience, third sector partners and education providers to improve the lives of people with Tourette syndrome across Scotland.
13:24 Meeting suspended.Previous
First Minister’s Question Time