Tourette’s syndrome

Conor McGinn Excerpts

Tuesday 25th January 2022 Westminster Hall

[Judith Cummins (in the Chair)]

Before we begin, I remind Members that they are expected to wear face coverings when they are not speaking in the debate. This is in line with current Government guidance and that of the House of Commons Commission. I will call Conor McGinn to move the motion and then I will call the Minister to respond. There will not be an opportunity for the Member in charge to wind up, as is the convention for 30-minute debates.

[Conor McGinn (St Helens North) (Lab)]

I beg to move,

That this House has considered the treatment and study of Tourette’s syndrome.

It is a pleasure to serve under your chairmanship, Ms Cummins. I am delighted to have secured this debate on Tourette’s syndrome and how a lack of provision for research, diagnosis and treatment is impacting on individuals and families across the United Kingdom.

First, it is worth explaining what Tourette’s syndrome is. In short, it is an inherited neurological condition that causes involuntary and uncontrollable motor and vocal tics. Tics usually start in childhood, around the age of six or seven, and can fluctuate in severity and frequency, potentially occurring in nearly any part of the body and in any muscle. This can be painful, as one might imagine, and of course very debilitating, even disabling. Tourette’s is not often experienced in isolation. Up to 85% of those with Tourette’s syndrome will also experience co-occurring conditions and features, which might include attention deficit hyperactivity disorder, ADHD, or obsessive compulsive disorder, OCD, and indeed anxiety. These can be equally challenging, if not in some cases more challenging to manage than tics.

By far the biggest misconception about Tourette’s is that it is a condition that simply makes people swear or say socially inappropriate things. Involuntary swearing is a symptom of Tourette’s syndrome, but it affects only a minority. Ninety per cent. of people with Tourette’s do not have this symptom. However, having secured this debate, in my experience it is the single factor that those I have spoken to—colleagues in this place and others—commonly think of as the defining characteristic of Tourette’s. That goes to the heart of the challenge that we have in addressing some of the misconceptions about this condition.

Despite Tourette’s syndrome affecting the quality of life of over 300,000 people here in the UK—including, figures indicate, approximately one school-age child in every 100, most of whom are undiagnosed—this is a condition that, although relatively prevalent, remains widely misunderstood. Indeed, it is often deeply stigmatised and mocked throughout society. The stigma cannot be overstated, and the impact of it is very real. A recent study published in the Journal of Developmental and Physical Disabilities in 2021 outlined just how many participants faced discrimination in numerous aspects of life: 75% in education, 71% in their social lives, 61% on public transport and 54% in employment. A 2017 study concluded that people with Tourette’s are over four times more likely than the general population to take their own lives.

The reason I applied for and am leading today’s debate is to support my constituent Emma McNally, a St Helens mum who first wrote to me in July 2020. Her son was diagnosed with Tourette’s syndrome aged nine and could access regular appointments under the care of an excellent neurologist at Liverpool’s Alder Hey Hospital, which I know is familiar to the Minister. The retirement of the specialist in March 2020 left a gaping hole in provision locally and Emma’s son was discharged, with no one able to take him on. Unacceptably, to this day he has been left without the care he needs.

Emma’s journey—from local St Helens mum, living in Parr in my constituency, who contacted her local MP—to national campaigner and now the chief executive of the national charity for Tourette’s has done a great deal to highlight and raise awareness of this condition. Her e-petition on Tourette’s, submitted through the mechanism we have in this House, secured 71,000 signatures, which reflects the clear strength of feeling across the country for better care and services. She is fighting tenaciously on behalf of families around the country. Although her petition sadly fell just short of the threshold required for automatic discussion in this House, I am glad that we are having today’s debate, which goes some way to doing justice to her brilliant work and the importance of this issue. I have been contacted by more than 30 colleagues from all parties across the House, from all parts of the United Kingdom, who have expressed their support. I want especially to mention the Minister’s colleague and the erstwhile Parliamentary Private Secretary at the Department of Health and Social Care, the hon. Member for St Austell and Newquay (Steve Double), who has worked with me over the last year on this issue. He is prohibited from actively participating in this debate because he is now in the Government Whips Office.

The debate is long overdue. The last time the House met to debate Tourette’s syndrome was in 2010. Back then, the charity Tourettes Action held a list of 44 consultants in the UK with a special interest in Tourette’s syndrome. Now, there are only 17 who provide care in the NHS and will see children, and there are none in the north-west. I am sad to say that the picture for those living with this condition and their families has got worse over the last decade, and it should be getting better. We need to change this.

Families tell me that there is a significant and urgent need for specialist services and clinicians to bolster early diagnosis and rapid treatment. Early intervention in Tourette’s cases could reduce the more pernicious, longer-term strains on an individual’s mental and physical health and wellbeing, as well as on that of their friends, families, colleagues and teachers, by giving them a clear diagnosis and an idea of who to turn to.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate the hon. Member on securing the debate. On the issue that he has explained—the much-misunderstood aspects of Tourette’s—would he agree with me that we need not only more finance and more professionals involved in treatment but a greater degree of research into the development of Tourette’s, to assure present and future generations that it can be seriously tackled?

--- Later in debate ---

[Conor McGinn]

I thank the hon. Gentleman for his support and his intervention. I will come to research; it is an absolutely critical part of a holistic approach that understands more about the condition, intervenes early and provides ongoing care. I thank him for his support for his constituents affected by Tourette’s.

I am sure that the Minister will agree that it is unacceptable that Emma McNally’s son has to travel to London from St Helens to have treatment for this condition. That is something that we need to change. Although there are specialist centres for Tourette’s, the problem for families is that many centres accept only local referrals, or those from local child and adolescent mental health services. If there is no Tourette’s specialist at a local CAMHS, or indeed in the clinical commissioning group area—and the CCG considers this outside its remit—the result is that care is inevitably denied. That produces a Catch-22 situation: care is not available locally at CCG level or further afield regionally—and only sparingly nationally.

Families want clearer referral pathways to help those with Tourette’s, as well as clearer referral guidelines for professionals. Despite their best efforts, many GPs simply do not know where to refer children or adults with tic disorders. Currently, many patients are experiencing long waiting times and the ping-pong of being referred back and forth from one service to another, which, as well as being incredibly frustrating for patients, wastes the time and resources of our professionals in the NHS.

Even clinicians in CAMHS and paediatrics lack clarity on how to treat tics. That needs fundamental improvement. A clearer process, with clearer guidelines, along with more professionals with a specialist interest in treating Tourette’s, would also go some way to reducing the number of patients who are diagnosed and discharged at the same appointment. For them, follow-up care is not a possibility. They then find themselves trapped in a spiral of referral and rejection.

As the hon. Member for East Londonderry (Mr Campbell) has already alluded to, research is key for clinical and public understanding. The Government’s response to Emma McNally’s petition said:

“Funding has been committed to support research into Tourette’s syndrome.”

Research investment into this condition through the National Institute for Health Research plummeted by almost 50% between 2019-20 and 2020-21, from just under £670,000 to just over £362,000. I repeat:

“Funding has been committed to support research into Tourette’s syndrome.”

The Government also referenced a renewed focus on expanding Health Education England’s clinical psychology training intake to help adopt and develop services and respond to patients’ needs. When I asked Ministers what proportion of the wider clinical psychology intake had taken a specialist or, indeed, any interest in a Tourette’s placement, the Department said it did not possess that information. That will not provide much assurance to families listening today. I know the Minister is sympathetic, which is why I have deliberately made this debate about the issue and the policy, because it is one that we can work on together. Will she provide some clarity on that now, or if that is not possible today, can she take it away and write to me?

It is a question of fairness. Tourette’s has similar levels of prevalence in our society as autism and epilepsy, but where diagnosis and support, along with public awareness, for those conditions has improved in recent years, understanding and support for Tourette’s remains much more limited. Indeed, it is hard to imagine where many individuals and families would be without the fantastic work of charity and support groups in this area, such as Tourettes Action, The Brain Charity, the ADHD Foundation and others who do so much to support people.

In conclusion, I hope today’s debate will play a role in raising awareness of Tourette’s syndrome and the wider struggle that so many families across the country face in getting the support and treatment to which they should be entitled. The Minister has heard what I have had to say. Will she meet Emma and some of the other families to hear directly from them, if the opportunity arises? I know her intentions are good and I am sure that she will pledge to do her bit to work with me and others in this House who take an interest in this, as well as with the people who are directly affected. That way, we can try to transform the experience of those living with Tourette’s syndrome so they can get the support they need to live the happy and fulfilled lives that they very much deserve.