The struggles of living with Tourette Syndrome

The video animation is dedicated to those with tics who have lost their lives to suicide. The aim of the video is to persuade those decision and policy makers to support us in making changes to healthcare guidelines for Tourette Syndrome.

Funding from the Institute of Policy and Engagement at the University of Nottingham has allowed researchers to carryout 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 Groom from the University of Nottingham and arrange of stakeholders, including myself, who are campaigning for national healthcare guidelines for TS. A group of us worked with an animation company, Woven Ink, worked to create a hard hitting animation. The group included educational professionals, charity representatives, researchers and lived experience advocates including Paul Stevenson, Emma McNally, Marie Ralph, Dr Seonaid Anderson, Daniel Jones and Dr Jennifer Salvage.

Over the year, the researchers at University of Nottingham recruited 3 young people and 10 adults with tic disorders, and 10parents of children with tics. The researchers co-ran 7 focus groups, split by adults, parents or young people and asked questions Including about peoples journey accessing support and whether their life would have been different if they had been able to more easily access support.

This working group I have been part of group has been collaborating 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.

We want as many people as possible to share the videos on Facebook, Twitter, Instagram, LinkedIn and Tik Tok using the hashtag #TourettesHearUs

We are also asking for people to tag in their MP and other people local to them who can bring about change within the NHS.

We are hoping this animation may help us be heard if we all come together, so any help is much appreciated

Please share with others in the TS community

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