Petition Increase funding to provide support and research into Tourettes Syndrome
Tourettes affects 1 in 100 children, yet the support provided is minimal and very patchy across the UK, some areas have NO support.
Theres only a handful of specialist Tourettes centres in the whole of the UK - we need more of these to provide care for EVERYONE! More research leads to more help!
The support throughout the UK is nothing far from shocking, some areas having NO support what so ever.
Not getting a diagnosis and not getting the correct support at such an important age can lead to life long behavioural and mental health issues, which can be alleviated by having the right support from the start!
If more funding was given to create more specialist Tourettes centres this would help many families who are currently struggling.
More research would ultimately give more answers!
This response was given on 19 April 2021
Funding has been committed to support research into Tourette’s syndrome. Services are locally commissioned, with clinical specialists supporting patients and their families.
Read the response in full
The majority of services for people with Tourette’s syndrome are commissioned locally by Clinical Commissioning Groups, who are best placed to plan the provision of services subject to local prioritisation and funding. Services are commissioned through local community paediatric services or Child and Adolescent Mental Health Services, with the pathways to one or the other varying across the country. These 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 condition.
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 increase the number of trained clinical psychologists available, Health Education England has supported a 60 per cent expansion in the clinical psychology training intake over the past two years. Trainees are able to undertake specialist placements focusing on Tourette’s syndrome, in addition to Tourette’s syndrome featuring as part of the broader neuropsychology curriculum.
For those who require more detailed specialist support, there are a small number of recognised services with focused multidisciplinary teams assessing and supporting children with tics, Tourette’s syndrome and motor stereotypies and their families. The focus of these teams is either from a neurology, behavioural or neuropsychiatry perspective, or a combination of these specialties. These centres have internationally recognised expertise in the assessment and management of Tourette’s syndrome, and frequently discuss complex patients in an informal clinical network. National and international guidelines for management have been published to support care pathways.
The Department of Health and Social Care funds research into conditions through the National Institute for Health Research (NIHR). NIHR welcomes funding applications for research into any aspect of human health, including Tourette’s syndrome, although it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. Since 2018, £2.1 million has been invested into research on Tourette’s syndrome through NIHR’s research programmes. This includes a study on deep brain stimulation in people with Tourette’s syndrome and a digital behavioural intervention for tics in children and adolescents.
Department of Health and Social Care
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