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Lookup NU author(s): Daniel Jones
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© Author(s) (or their employer(s)) 2025.Objectives Chronic tic disorders (CTDs)—such as Tourette Syndrome (TS)—are neurodevelopmental disorders affecting at least 1% of the population, causing repetitive involuntary movements and vocalisations known as tics. This study aimed to explore the lived experiences of accessing healthcare for people with CTD or TS and their families in the United Kingdom (UK), as part of a larger programme of work to inform change to healthcare services for this population. Design Informed and designed with extensive patient and public involvement, the design utilised qualitative research using focus groups. Reflexive thematic analysis was used to analyse the data. Setting Participants were recruited via online support groups, social media and research registers. Participants Seven focus groups were held separately with young people with tics (n=2), adults with tics (n=10) and parents/guardians of children with tics (n=11), led by a lived experience expert (coauthor PS) and facilitated by researchers. Discussion focused on three areas: the impact of living with tics, experience accessing healthcare for tics and management of tics. Results Five themes were developed highlighting challenges across the healthcare pathway, including gaining a diagnosis, and receiving treatment, resulting in the use of self-support methods to reduce tic expression or the impact of tics. Themes also illustrated perceptions that healthcare provider's knowledge impacted initial interactions with the healthcare system, and how healthcare systems were not felt to be prioritising CTDs. Conclusions The findings highlight a lack of prioritisation for tic disorders compounded by a healthcare structure which does not support a complex condition that requires a multidisciplinary approach. This research calls for improvements to UK healthcare services for CTD.
Author(s): Babbage CM, Davies EB, Jones DP, Stevenson P, Salvage J, Anderson S, McNally E, Groom MJ
Publication type: Article
Publication status: Published
Journal: BMJ Open
Year: 2025
Volume: 15
Issue: 9
Online publication date: 05/09/2025
Acceptance date: 22/07/2025
Date deposited: 16/09/2025
ISSN (electronic): 2044-6055
Publisher: BMJ Publishing Group
URL: https://doi.org/10.1136/bmjopen-2024-098306
DOI: 10.1136/bmjopen-2024-098306
Data Access Statement: Due to the sensitive nature of this topic, the datasets generated during the current study are available from the corresponding author upon request due to their containing sensitive and personal information. Further information can be found at the University of Nottingham data repository (doi: 10.17639/nott.7597).
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