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.

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.

Participants were recruited via online support groups, social media and research registers.

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.

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.

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.

The COVID-19 pandemic prompted a significant increase in the use of remote consultations—by telephone or video—in both primary and secondary healthcare. The reported advantages of remote consulting for both patients and clinicians include greater efficiency, flexibility and convenience. However, disadvantages, such as the uncertainty created by a loss of face-to-face contact, have also been highlighted. The aim of this study was to explore, explain and interpret patients’ and clinicians’ perceptions and experiences of remote consultations and assist decision-making about their future use.

A qualitative study based on semistructured online interviews.

Primary mental healthcare or secondary care cardiology services, London, UK, February–March 2022.

Primary care mental health patients (n=5), primary care clinicians (general practitioners) (n=15), secondary care cardiology patients (n=9) and secondary care cardiology clinicians (n=5).

The results demonstrate that a range of factors have influenced the experiences of both clinicians and patients and indicate shifts in the norms of professional practice and clinician–patient relationships.

Patients and clinicians demonstrated pragmatic acceptance of remote consultations and, looking forward, a preference for a balanced ‘hybrid model’ of remote and face-to-face appointments. The study also highlights a need to consolidate and build on the informal learning and adaptation to remote consulting that has already taken place.