“For the love of God, just refer me”

Posted on 15 September 2025 by Pippa McClounan

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A community-led research project aiming to improving healthcare for people with tics and Tourette syndrome

Researchers from the University of Nottingham are excited to share the results of a powerful research project that explored the experiences of children, young people, adults, and families when accessing healthcare for tic disorders and Tourette syndrome in the UK.

You may remember the powerful animation that was developed for the #TourettesHearUs campaign back in 2023: https://institutemh.org.uk/research/national-steering-group-for-tics-tourette-syndrome/about-us

This animation began from conversations between researchers and members of the National Steering Group for Tics & Tourette syndrome, as the community wanted a way of documenting their experiences trying to get support for their tics. The plan was to run a project that would lead to visual and research outputs, that could be used to bring attention to, shape and change policy.

Together, the group co-designed a research study including writing a funding application and having members of the tic community facilitating meetings with participants. This meant the data was collected by those who also experience tics, supported by researchers.

To do this, they held focus groups with children and young people with tics, adults with tic disorders and parents and carers. Questions focused on people’s journeys accessing help for their tics, what might have been different if access to help was different, and what people do to support with symptoms.

The research article includes findings which shared the many challenges participants revealed, including:

• “The NHS does not have a mechanism to diagnose Tourette’s in adulthood” – Participants shared their experiences of long delays in receiving a diagnosis and accessing treatment, often waiting years for referrals.
• “When I did get diagnosed and I never heard back from anybody” – Participants talked about experiences with healthcare professionals felt to be shaped by the professionals' understanding (or lack of) and leading to missed opportunities for support.
• “I have never ever seen a Tourette specialist” – Participants found there were fragmented and limited treatment options, leaving them feeling that healthcare services were inequitable and restrictive.
• “All of my techniques have all been my own suggestion” – Participants highlighted the lack of professional support, causing them to need to develop their own coping strategies.
• “If he had a broken leg, it’ll be fixed” – Participants reflected that the healthcare system is not structured in a way to meet the needs for those with tic disorders.

For those who gave additional permission, their voices were included in the co-created animation, designed by Woven Ink, to bring these experiences to life. This was shared widely on social media and reached over 500,000 people.

Since, the group have continued work with the National Steering Group to develop a policy brief, which aims to raise awareness and drive change in how healthcare services are commissioned and delivered across England. The research group plan to continue working with lived experience partners and healthcare professionals to push for better access to healthcare for those living with tics, including clearer referral pathways and national clinical guidelines.

Read the article here:
https://bmjopen.bmj.com/content/15/9/e098306

View the policy brief here:
https://institutemh.org.uk/research/national-steering-group-for-tics-tourette-syndrome/policy-brief

The project team want to extend a huge thank you to their lived experience partners, and to all the participants who shared their powerful stories. 

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