The recently released film, I Swear, captures how little was understood about Tourette syndrome when John Davidson was growing up in the 1980s. The film shows John facing misunderstanding and discrimination, while struggling to find acceptance in school, work and everyday life. In doing so, it raises awareness of the challenges that many people with tics still face today.
Since its release, the film has brought renewed attention to Tourette syndrome and sparked wider discussion in the media about the realities of living with tics. This increased visibility is important, helping to build understanding, challenge misconceptions, and raise awareness of experiences that are often overlooked. The impact of the film can also be seen in the responses of people with lived experience of tics. James, a member of our patient and public involvement (PPI) group, said:
The film accurately shows the variety of difficulties of living with Tourette’s in a way that made me, as someone with tics, feel genuinely represented.
Eve, a researcher working in the tic disorder field, reflected:
I truly believe that if more people watched this film, they’d gain a deeper understanding of life with tics, and a greater sense of empathy.
What is Tourette syndrome?
Since the 1980s, research has come a long way. We now understand Tourette syndrome as a neurodevelopmental condition that typically begins in childhood and affects around 1% of children and young people (CYP; Hollis et al., 2016). It is characterised by involuntary movements and sounds, known as tics, which can vary in type, frequency and severity over time. For some people, tics are mild, but for others they can cause significant distress, affect daily life, and have a substantial impact on education, relationships and wellbeing.
How is Tourette’s treated?
For decades, families were told that “nothing can be done”. That is no longer true.
In our research group (MindTech at the University of Nottingham) we have developed ORBIT, an online behavioural therapy that teaches young people strategies to reduce tics (Hollis et al., 2023a). This treatment has recently been recommended by the National Institute for Health and Care Excellence (NICE) for use within the NHS while more evidence is generated.
Researchers at Nottingham have also developed Neupulse, a wearable device that uses gentle nerve stimulation to help calm tics. John uses Neupulse in I Swear.
However, even with improved knowledge and understanding about tics and Tourette syndrome, research has highlighted persistent gaps in care across the UK, including delays for assessments and limited access to appropriate treatments.
The ImproviNg Tic Services in EnglaND (INTEND) study
Rattu and colleagues (2025) conducted the INTEND study, which examined how services for tics and Tourette syndrome for CYP are currently organised. The project aimed to:
- Understand how tic services across England for CYP are structured, including access to assessment and treatment
- Explore healthcare professionals’ experiences of assessing and treating CYP with tics
The INTEND study set out to better understand tic disorder services that currently exist in England, and healthcare professionals’ experiences of working within them.
Methods
To map existing service delivery, Freedom of Information (FOI) requests were sent to NHS trusts across England. FOI requests allow access to recorded information held by UK public authorities and were used in the INTEND study to gather data on referrals, assessment and diagnostic processes, and available treatments. 34 NHS organisations and 62 local health service providers responded to FOI requests.
To identify barriers and facilitators to delivering effective tic care, 184 healthcare professionals from across the UK completed an online survey. Respondents came from a range of clinical backgrounds, including Child and Adolescent Mental Health Services (CAMHS), paediatrics and neurology, and included psychologists, psychiatrists, nurses, and allied health professionals. They were asked about their experiences of working in tic services and additional training needs.
Quantitative survey data were analysed descriptively to identify patterns in service provision and clinician experiences, while free-text responses were examined using qualitative thematic analysis.
Results
FOI request
Responses to the FOI requests demonstrated that tic service provision is inconsistent and very limited across England. Despite evidence-based treatments being available, many CYP still cannot access appropriate care because the NHS lacks clear care pathways.
Based on initial FOI requests, 80 service providers were identified as providing care for CYP with tic disorders. Out of the 62 services that responded to a second FOI request, only 12 offered a full diagnostic and treatment pathway for tic disorders. This means that within a single service, CYP can access assessment, diagnosis, treatment and ongoing support for tics without being passed between multiple services. Five of these pathways were in London, while no NHS trusts in the Northeast or East of England reported providing a complete pathway.
Further findings suggest that tics were not always considered a sufficient reason for referral on their own, particularly when CYP did not also present with co-occurring mental health or neurodevelopmental difficulties. Information about referrals received and accepted, and the number of CYP assessed and treated was often not recorded, but psychoeducation, behavioural therapy and medication seemed to be more common than family interventions.
Online survey
Of the 184 clinicians surveyed, the results highlighted widespread frustration about the lack of resources available for tic disorders. Clinicians described limited funding, insufficient staffing, and a lack of national clinical guidance as major barriers to delivering effective care.
Confidence in assessing and treating tics was also reported to be low among healthcare professionals, with many respondents stating they had received little or no formal training in tic disorders. This is particularly concerning given that many CYP with tics are first seen in general community, paediatric or mental health services rather than specialist clinics.
Out of the 62 services that responded to Freedom of Information requests, only 12 of them had a full pathway for diagnosing and treating tic disorders in children and young people. Five of these 12 services were in London.
Conclusions
While we have come a long way since the experiences portrayed in I Swear, there is still much more work that we need to do. We now have evidence-based treatments, growing public awareness, and promising innovations such as online behavioural therapies and wearable technologies. Films like I Swear help bring these experiences into public view, challenging stigma and helping people with tics feel seen and understood.
However, the INTEND study highlights a major gap between what research suggests is possible and what many CYP can actually access in practice. Across England, tic services remain inconsistent, under-resourced and difficult to navigate, with access to support often depending on where a family lives.
The message is clear: awareness is important, but it must be matched by investment in clear clinical pathways, training and equitable access to evidence-based care.
A range of different treatments now exist that can help to reduce tics in young people and provide families with coping strategies, but are these services accessible in practice?
Strengths and limitations
A key strength of the INTEND study is its use of FOI requests to gather data directly from NHS organisations and service providers across England. This approach enabled the researchers to build a national picture of how tic disorder services are organised, highlighting substantial regional variation in access to assessment, diagnosis and treatment. This is particularly valuable because there has previously been very little detailed information about how services are delivered in practice. Understanding these gaps in provision is essential for identifying inequities in care and supporting the development of clearer national pathways for CYP with tics.
Another strength is the study’s multi-method design, which combined service-level data with survey responses from healthcare professionals working in tic services. This allowed the researchers not only to map where services exist, but also to explore the practical barriers clinicians face when trying to deliver effective care. The involvement of clinicians from a range of professional backgrounds and healthcare settings helped provide insight into the complexity of tic care across the NHS.
The study was also informed by PPI, ensuring that the perspectives of CYP with tics and their families contributed to shaping the research questions and interpretation of findings. This is particularly important in service development research, where lived experience can help identify priorities that may otherwise be overlooked.
However, the study also has several limitations. Although organisations are legally required to respond to FOI requests, a number did not, meaning the true extent of variation in tic service provision may not have been fully captured. As the authors note, services with stronger existing pathways may have been more likely to respond, potentially leading to an overly positive picture of current provision. Additionally, healthcare professionals who completed the survey may have had a particular interest in tic disorders, which could limit how representative their views are of the wider workforce. There were also relatively few participants from highly specialist tic services, and the sample lacked diversity in some areas, limiting the extent to which the findings reflect all professional and patient experiences across England.
The INTEND study provided the first detailed picture of how tic disorder services are organised across England, but may not be fully representative due to non-response and inconsistent data.
Implications for practice
Now that we have a clearer picture of the scope of the issue, the question becomes what needs to change in practice. The INTEND findings point to a clear need for more consistent, joined-up care pathways so that access to assessment and treatment does not depend on where a young person lives. This also requires investment in training across CAMHS, paediatrics and neurology, so that clinicians feel confident identifying tics early and either delivering or signposting to appropriate support.
At the same time, there is an opportunity to rethink how tic care is delivered. Digital interventions such as ORBIT demonstrate how effective, evidence-based interventions can be delivered in ways that reduce reliance on highly specialist clinicians, helping to ease workforce pressures while widening access. This kind of innovation is particularly important in a system where specialist tic services are limited and unevenly distributed. For policymakers and funders, the implication is clear: improving outcomes will require not only recognising what works, but actively supporting its implementation through commissioning, training and service redesign.
Alongside this, future research needs to focus on how interventions proven to be effective can be embedded into routine care at scale. Understanding how to implement and sustain these approaches within real-world NHS pathways will be key to closing the gap between evidence and access, and ensuring that effective treatments reach the young people who need them most.
What is being done about it
Based on the findings from this study, the INTEND team has worked with clinicians, policymakers and people with lived experience to design a best-practice care pathway for tic disorders in England. The goal is simple: make evidence-based treatments like ORBIT available to everyone who needs them, wherever they live. The research shows that structured, early intervention not only improves quality of life but also saves the NHS money by reducing demand for crisis services later on (Hollis et al., 2023b). Download the INTEND recommended best-practice care pathway of tic disorders in CYP (PDF), developed with key inputs from parents and carers of young people with tics.
Why this matters now
The release of I Swear gives us a timely opportunity to move from awareness to action. John’s story captures both the progress we’ve made and the gaps that remain. It reminds us that scientific breakthroughs only matter if people can actually benefit from them.
Our PPI members shared their thoughts on the film, and their message was clear: awareness campaigns like this are incredibly important; they challenge stigma and help people feel seen.
But I truly believe that this film could be a game changer for the public’s understanding and acceptance, and I’ve come away with a renewed feeling of optimism for the future of living with Tourette’s. – James (PPI member)
However, awareness alone is not enough to deliver therapy appointments, diagnostic assessments or access to innovative technology. For that, we need policy change. Our team co-created the National Steering Group for Tics & Tourette Syndrome Policy Brief on Tic Healthcare Pathways.
This film is massively contributing to the awareness half of this progress, but the improvement in the care pathways is essential too. – Eve (Researcher)
Films like I Swear are helping to improve public understanding and reduce stigma surrounding tic disorders.
Statement of interests
Lily Roberts and Olivia Hastings are both researchers within the MindTech team at the University of Nottingham, and work alongside the authors of the INTEND study. However, neither were involved in the INTEND study itself.
James is a member of MindTech’s PPI group, and Eve Park is a researcher involved in this project. Both gave permission for their comments to be included in this blog.
Edited by
Dr Nina Higson-Sweeney.
Links
Primary paper
Nikita Rattu, Sophie Hall, Charlotte Hall, Tara Murphy, Joseph Kilgariff, Nadya James, Emma McNally, Alexia Jeayes, Kareem Khan, Suzanne Rimmer, Louise Thomson, & Madeleine Groom (2025). ImproviNg Tic services in EnglaND: A multi-method study to explore existing healthcare service provision for children and young people with tics and Tourette syndrome. BMJ Mental Health, 28(1). https://doi.org/10.1136/bmjment-2025-301599
Other references
Hollis, C., Pennant, M., Cuenca, J., Glazebrook, C., Kendall, T., Whittington, C., … & Stern, J. (2016). Clinical effectiveness and patient perspectives of different treatment strategies for tics in children and adolescents with Tourette syndrome: a systematic review and qualitative analysis. Health Technology Assessment (Winchester, England), 20(4), 1. https://doi.org/10.3310/hta20040
Hollis, C., Hall, C. L., Khan, K., Jones, R., Marston, L., Le Novere, M., … & Murphy, T. (2023a). Long‐term clinical and cost‐effectiveness of a therapist‐supported online remote behavioural intervention for tics in children and adolescents: extended 12‐and 18‐month follow‐up of a single‐blind randomised controlled trial. Journal of Child Psychology and Psychiatry, 64(6), 941-951. https://doi.org/10.1111/jcpp.13756
Hollis, C., Hall, C. L., Khan, K., Le Novere, M., Marston, L., Jones, R., … & Murphy, T. (2023b). Online remote behavioural intervention for tics in 9-to 17-year-olds: the ORBIT RCT with embedded process and economic evaluation. Health Technology Assessment (Winchester, England), 27(18), 1.
https://doi.org/10.3310/CPMS3211