We are a team of academics and lived experience experts and advocates who have worked together to lead an innovative co-produced research study investigating the experiences of people with tics and Tourette Syndrome (TS) trying to access healthcare in the UK. Despite TS affecting at least 1 in 100 people, there are currently no guidelines for TS and no services in many parts of the country. Moreover, those affected often face stigma and misunderstanding from the public and healthcare professionals. We aimed to amplify their voices in the public domain and amongst healthcare policy makers.

This project includes co-delivered research and public engagement funded by the Institute of Policy and Public Engagement. The research comprised focus groups with adults and young people with tic disorders and parent/carers to explore their experiences of accessing UK healthcare for their tics. As part of the process, participants were given the option to provide additional consent for their voices to be used in an animation developed by Woven Ink, an external design company. The animation can be viewed here.

The project idea was driven by discussions between the academic team and lived experience partners. The research design, funding application and ethics application was cowritten with our lived experience partners. Designing a project with our lived experience team enabled an empathic and meaningful approach to our participants and wider community. Examples include: co-designing of the focus group questions, having a lived experience partner as a focus group facilitator, support with participant recruitment, appropriate debriefs and support offered to participants, and qualitative analysis contributions. The funding included payment for project partners for their time, an essential component of patient and public involvement in research. Participants and partners have also been invited to co-author the publication.

On completion of the focus groups, transcripts were shared with Woven Ink, who we carefully selected for their expertise in capturing lived experience voices and their iterative codesign process. All meetings with Woven Ink were attended by academic and lived experience partners with design and content decisions discussed and revised until unanimous. These decisions included the choice of script, artist, music, font, and captions, with a particular focus on accessibility. Our dissemination strategy was co-designed with our lived experience partners to reach specific people and groups on social media. Academics and project partners worked together to coordinate the release of the animation video on a specific date and time to maximise reach. After the first launch (17/02/2023) we reached at least 500,000 people, with 2500 likes and 1000 shares via Twitter, TikTok, Instagram, LinkedIn and Facebook. The animation was endorsed by advocates of the tics and TS community. We have been contacted by a prominent MP who is interested in supporting our campaign.

The group plans to re-launch the video and continue social media campaigns throughout 2023, including Tourettes Awareness Month. The video will be played at academic and healthcare conferences including the Institute of Mental Health Research Day (UK) and the European Society for the Study of TS (Belgium).

Publication

‘For the love of God, just refer me’: a co-produced qualitative study of the experiences of people with Tourette Syndrome and tic disorders accessing healthcare services in the UK

Return to Steering Group homepage