A research summary by Rena C. Zito, Elon University, USA
This study by researchers at the University of Nottingham (UK), Newcastle University (UK), the University of Sheffield (UK), and four TS and neurodiversity organizations explored how children, adolescents, and adults in the UK access healthcare services for Tourette Syndrome (TS) and other tic disorders.
The research was guided by input from a TS steering group to ensure it reflected the priorities of people with tic disorders. Data were collected through seven focus groups led by a person with TS, including separate groups for young people with tics, adults with tics, and parents or guardians of children with tics. In total, 23 people participated.
The researchers identified five themes:
- Knowledge of TS among healthcare professionals is essential. Informed providers spend more time with patients, are more engaged, and help facilitate treatment, whereas less informed providers are often dismissive.
- A diagnosis is necessary for accessing information, support and acceptance. Timely diagnosis helps people obtain treatment and explain tics at work, yet the diagnostic process is typically long and difficult.
- There are significant barriers to accessing treatment. A shortage of specialists and challenges obtaining referrals leave many without needed care.
- People with TS devise their own tic management strategies. Many learn to cope with tics on their own and rely on peer support groups, which are often more helpful than healthcare services in managing everyday problems related to TS.
- The healthcare system is not structured to prioritize and support TS. Complex conditions like TS require a healthcare system where providers work together as a team rather than having separate specialists address one issue at a time without communicating with one another.
The authors conclude that there is a need for (1) greater training about tic disorders for medical professionals and (2) holistic care systems that extend beyond the neurologist’s office. They argue for a multidisciplinary, personalized care model that focuses on functional impairment rather than medication management alone. In this approach, providers with different forms of specialization would work together to create individually tailored plans that address functional impairments across multiple life domains.
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Summary of:
Babbage, C. M., Davies, E. B., Jones, D. P., Stevenson, P., Salvage, J., Anderson, S., McNally, E. & Groom, M. J. (2025). ‘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.
BMJ Open, 15(9), e098306. https://doi.org/10.1136/bmjopen-2024-098306