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!
1. Increase funding to provide support and research into Tourettes Syndrome
15/02/2021 - Petitions
Found: Tourettes affects 1 in 100 children, yet the support provided is minimal and very patchy across the UK
2. Written Evidence: Action for Children (DAB39)
16/06/2020 - Bill Documents
Found: Written evidence submitted by Action for Children (DAB39)
Call for written evidence: Domestic Abuse
Found: priorities for a national strategyCurrent roles across departments Current spending and barriers to investment Local
Found: disability that affects how a person communicates with, and relates to, other people. It also affects how they
The UK Strategy for Rare Diseases
1. Long Covid
14/01/2021 - Commons Chamber
1: co-sponsored the debate. Most of all, I want to thank everyone who has written to me, the all-party group or - Speech Link
2. Acquired Brain Injury
02/07/2019 - Westminster Hall
1: the Chamber—has been campaigning to ensure that everyone who does any kind of assessment for the Department - Speech Link
2: teens or early-20s. Sometimes they get put into support groups with people in their 60s or 70s. That is - Speech Link
3: injury. The most recent research suggests that every year tens of thousands of children are born in this country - Speech Link
3. Diabetes: Artificial Pancreas
12/12/2018 - Commons Chamber
1: Hospital; the Juvenile Diabetes Research Foundation; Incisive Health; and Diabetes UK. I thank them all for sharing - Speech Link
2: Minister wears one—are still not being allowed to children and young people who would benefit from them because - Speech Link
3: the proportion of people with type 1 diabetes attending specialist services who are treated with pumps - Speech Link
4. Covid-19: People with Neurological Conditions
27/05/2021 - Grand Committee
1: access to health and care services; and what steps they will take to restart specialist neurology services - Speech Link
2: order to hear the Government’s plans to restart specialist neurology services after the devastating pandemic - Speech Link
5. Ovarian Cancer: Diagnosis and Treatment
30/10/2018 - Westminster Hall
1: for allowing the debate, as well as everyone who is here to support this important and timely event—both - Speech Link
2: tends not to receive the bulk of the attention or funding. That is partly because that it does not affect - Speech Link
3: friend Jane Sagar had a cyst of 6.5 cm, which a specialist identified. However, its removal was not recommended - Speech Link
You may be interested in these active petitions
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!
Monday 19th 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.
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