Tourette’s syndrome

Judith Cummins 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.