Tourette’s syndrome

Gillian Keegan Excerpts

Tuesday 25th January 2022 Westminster Hall

[The Minister for Care and Mental Health (Gillian Keegan)]

It is a pleasure to serve under your chairmanship, Mrs Cummins. I thank the hon. Member for St Helens North (Conor McGinn) for securing the debate on this important issue. I have been listening and have heard his impassioned case for better support for children and young people with Tourette’s syndrome. In particular, I was touched by the story of one of his constituents, Emma McNally, and the difficulties that she and her son face in accessing the care and support that he needs. I want to extend my personal thanks to Emma, whose tireless campaigning, along with that of other parents of children with Tourette’s, has helped emphasise the importance of children with Tourette’s getting the help they need and the difficulties that they are facing getting that help, particularly in the north-west of England.

I know that for many patients and families, Tourette’s can be an extremely debilitating condition to live with. I regularly receive correspondence on this issue. I was particularly moved by the case of Jay Mangan from Sefton Central and his two children, Rebecca and Jack, both of whom have Tourette’s. Having watched the video that Mr Mangan shared, I was struck by the severity of the tic episodes that both Rebecca and Jack routinely suffer. As the hon. Member for St Helens North flagged in his speech, Tourette’s syndrome can be misunderstood. There is not much awareness of it, so videos such as Mr Mangan’s are helpful.

It is also important that Mr Mangan and families such as his get the support that they need. We know that with the right care and support, someone living with Tourette’s syndrome can lead a fulfilling life, which is why the Government are determined to ensure that all those with the condition have access to the appropriate services.

The majority of services are commissioned by clinical commissioning groups, which are best placed to understand the needs of their local area. Services are commissioned through local community paediatric services or child and adolescent mental health services. Such services will be appropriate for the majority of children and young people with Tourette’s syndrome, and the teams involved will refer them to multidisciplinary teams, including clinical psychologists where necessary, to help with the management of their conditions.

Clinicians are supported in that work through the BMJ Best Practice guidance on Tourette’s, which covers both diagnosis and management. For children who require more specialist support, there are currently three recognised specialist centres in the UK—one in Sheffield, and two in London. These centres have internationally recognised expertise in the assessment and management of Tourette’s syndrome.

Following the retirement of a consultant at Alder Hey Children’s Hospital who had developed a special interest in Tourette’s, I understand that the current level of support available in the area is different—we heard how that impacted on Emma’s son. Local CCGs have acknowledged the impact on families and are considering options to address the matter. We understand that Alder Hey Children’s Hospital has developed a proposal for a local tertiary service for Tourette’s, which is currently under review. Discussions with the nine Cheshire and Merseyside CCGs are being led by the NHS Liverpool CCG, with a meeting planned for later this month in order to scrutinise the proposed clinical model. I have asked to be personally apprised of the situation, and I want to take this opportunity to extend an invitation to the hon. Member for St Helens North to meet me and discuss the local situation further. Of course, I would also be very happy to meet the families and learn as much as I can from lived experience.

To support patients across the country, it is vital that we have sufficient numbers of trained healthcare professionals, as the hon. Gentleman said. There were more doctors and consultants working in the specialism of neurology in NHS trusts and CCGs in September 2021 than there were 12 months earlier. Furthermore, Health Education England has supported a 60% expansion in the clinical psychology training intake over the past two years, which is expected to achieve a growth of 2,520 additional psychologists in the NHS workforce by 2025. Clinical psychologists are well placed to develop new services and undertake further bespoke development to respond to the needs of patients with Tourette’s syndrome.

To support the provision of services that can help children and young people with Tourette’s, we are increasing funding to child and adolescent mental health services. In March 2021, we announced an additional £79 million of funding, which will be used to significantly expand children’s mental health services. That will allow around 22,500 more children and young people to access community health services, and it will provide a faster increase in the coverage of mental health support teams in schools and colleges. The Department for Education has also announced more than £17 million to improve mental health and wellbeing in schools and colleges, including new funding to train thousands of senior mental health leads.

However, we acknowledge that support must be provided to unpaid carers of children and young people with Tourette’s, whose lives are significantly impacted on by the responsibility of providing around-the-clock care and support. We will invest up to £25 million to work with the sector to kick-start a change in the services provided, to support unpaid carers. We know what vital role they play and the sacrifices that they make for their families. We expect that the funding will identify and test a range of new and existing interventions, which could include respite breaks and peer group and wellbeing support.

The hon. Member for East Londonderry (Mr Campbell) mentioned research, which is very important. As we look forward, we recognise the value of funding and supporting research into Tourette’s. We are currently funding a number of studies, including a study on deep brain stimulation in people with Tourette’s and a digital behavioural intervention for tics in children and adolescents.

The hon. Member for St Helens North mentioned the variability in funding: some £2.1 million was spent on Tourette’s research between 2018 and 2020, but that figure depends on applications to the fund, which are not always linear. However, we very much welcome applications to that fund in order to understand Tourette’s and its underlying conditions, in addition to those studies that we are undertaking.

I close by once again thanking the hon. Member for St Helens North for securing this important debate. It is important in raising awareness, and it is important to families in the north-west, in the Merseyside area—an area that I am familiar with, as the hon. Gentleman said, because it is where I am from. It is important that families get the support they need, because the condition is difficult for some families to overcome. I thank those parents and families as well for all their work on raising the profile of this condition and the understanding that, with the right care and support, people can go on to live fulfilling and happy lives. I look forward to meeting with the hon. Gentleman and some of the campaigners to discuss this issue further, and to focus on securing the support that many families in the north-west need.

Question put and agreed to.