Published on: July 22, 2024
Christina Wilford, Supervising Practitioner at Compass Changing Lives, is part of a steering group that aims to improve support and services for those with Tourette’s Syndrome and tic disorders.
The group is part a wider study called INTEND (ImproviNg Tic Services in EnglaND), funded by the National Institute for Health and Care Research and led by Dr Maddie Groom, that aims to establish an evidence based co-produced service model for the referral, assessment, and treatment of tics in Children and Young people.
The group is linked to the University of Nottingham, and includes health care professionals, researchers, experts by experience and charities like Tourette’s Action and TIC Yorkshire.
Tics are repeated involuntary movements or sounds made by people affected by Tourette’s or other tic disorders. Many with these disorders struggle to get diagnosis, support and treatment, as support options in the UK are very limited. In addition, many experience co-occurring difficulties including Autism, OCD and depression. These circumstances can lead to negative impacts on the mental health and wellbeing of those that suffer from tics, as well as their families.
The INTEND study aims to be solution focused, with the hope being that it will have a positive impact on services. By developing a designated pathway for those with tics and Tourette’s to seek support, services will be able to signpost those affected to accesses the support they need.
Christina, as well as being a healthcare professional with years of experience of supporting CYPF with mental health, also has lived experience of tics herself. Talking about her experience, she says:
“I have struggled with my own tics since I was a teenager, I remember going to my GP panicking and worrying what was happening to me and why! They gave me very little information with made me feel even more worried. One of my friends is diagnosed with Tourette’s and was lucky to receive a diagnosis but even after that, there was no support or guidance.
I have found it common that professional knowledge on tics can be limited and I am passionate about making sure young people with tics/Tourette’s have a positive experience and that we as mental health professionals are equipped to be compassionate, understanding and supportive of the needs of these young people and families. I believe this research is a key part of that journey.”
Christina and the steering group have reached out to Compass services, seeking more expertise to contribute toward the research. Many practitioners have already got in touch, and will give their views in future meetings.
To find out more about the research click here. To listen to the Association of Child and Adolescent Mental Health podcast episode discussing the INTEND study, click here.