CANDAL members, led by Dr Maddie Groom, and in collaboration with the charity Tourettes Action, are leading a steering group to campaign for better services and NICE guidelines for Tourette Syndrome.

The steering group includes academics from the University of Nottingham, clinical experts, charities and those with lived experience or parent/carers. The group is campaigning to raise awareness of the challenges faced by people with this complex condition.

Their work so far includes qualitative research to explore the experiences of accessing healthcare for tics, brief videos to highlight the struggles of living with Tourettes, and contacting MPs and ministers to gain their support. Further updates will be posted here, and you can find out more by following the campaign on social media.  

Watch our video, highlighting the lived experience of people living with Tourette Syndrome and tic disorders.

Trigger warning: references to suicide

Advisory viewing age: 15+

About the video

In February 2022, Maddie Groom, Bethan Davies and Camilla Babbage applied for funding from the Institute of Policy and Engagement at the University of Nottingham to carry out research into the experiences of young people and adults with tic disorders in accessing healthcare. This is part of a wider piece of work being led by a steering group led by Maddie and a range of stakeholders, campaigning for national healthcare guidelines for TS. The funding was granted, which allowed us to bring our partner organisations on board, TIC, NeuroDiverse and Tourettes Action, our expert lived experience panel, Paul Stevenson, Emma McNally, Marie Ralph, Seonaid Anderson, Daniel Jones and a research assistant, Jennifer Salvage.

Over the year, we recruited 3 young people and 10 adults with tic disorders, and 10 parents of children with tics. We ran 7 focus groups, split by adults, parents or young people and asked questions including:

1. How has your journey been accessing support for your tics?
2. Do you think your life would have been different if your medical journey was different?
3. What are your experiences of living with Tourette’s Syndrome or with a tic disorder?
4. What do you do to help with your symptoms?

The focus groups were put together and facilitated by members of our lived experience panel.

Since the focus groups were completed, our group has been working with Woven Ink, an animation company, to develop a video of the findings from the focus groups. The transcripts of the focus groups were given to Woven Ink, who created a script from the quotes of participants who agreed for their voices to be used as part of the animation. As a group, we continuously met with Woven Ink to decide on the style, quotes, scenes and music to be used in the animation, with many iterations of the video being developed.

As of February 2023, we have a final version of the video to share with the public. We are immensely proud of this co-produced piece of work, which we have dedicated to those with tics who have lost their lives to suicide. We are working on a published piece of research to accompany the video. Our aim is to share this video widely to persuade those decision and policy makers to support us in making changes to healthcare guidelines for Tourette Syndrome.