An NIHR-funded project led by Professor Maddie Groom at the University of Nottingham and supported by the UK charity Tourettes Action, launched on November 1st, 2023. The ImproviNg Tic services in EnglaND (INTEND) study explored current service provision for tics and Tourette syndrome in England by contacting NHS organisations.

We also asked healthcare professionals working in children and young people’s services about their experience of assessing and treating tics and whether they felt they would benefit from more training in this area. We then worked with experts throughout England to develop a recommended care pathway for the referral, assessment and treatment of tics.

Responses from NHS organisations demonstrated that tic service provision was inconsistent and very limited across England. Only 12 service providers were identified as providing a full care pathway that offered both assessment and treatment, and 5 of these providers were located in London.

The national survey was completed by 184 healthcare professionals. They highlighted a lack of resources, including funding, training and national clinical guidelines for tics. Most survey respondents identified a need for further resources to support them with both assessing and treating tics, including training. FOI and national survey responses together emphasised that tic services need urgent improvement.

Experts rated 62 service features on their level of importance to include within a care pathway. Based on these ratings and a team workshop, a final 43 service features were approved to guide the design of the care pathway.

Our Patient and Public Involvement (PPI) panel consisting of ten parents/carers of young people with tics provided vital input throughout the study. They shared feedback on study findings, including how findings reflected their personal lived experiences. Their input on key aspects of the INTEND Pathway also ensured that its design suited the needs of young people with tics and their families.

We are now meeting with clinical teams and commissioners in several NHS Trusts in England to gather their feedback on these recommendations. We will then seek further funding to implement and evaluate the recommendations and accompanying guidelines within clinical services.

See an infographic summarising the INTEND study here

If you need a written version of the above infographic, please contact the team This email address is being protected from spambots. You need JavaScript enabled to view it.

The INTEND Expert Pathway

Download the INTEND expert pathway here

Guidelines for implementation

Copyright statement:

The INTEND Integrated Care Protocol (pathway) and accompanying written guidelines are licensed under a Creative Commons Attribution–No Derivatives 4.0 International Licence (CC BY‑ND 4.0).

You may share this material in any medium or format for any purpose, including clinical, educational, or organisational use, provided that:

• Appropriate credit is given to the original authors/organisation (Professor Maddie Groom, INTEND study team, Institute of Mental Health, University of Nottingham)
• A link to the CC BY‑ND 4.0 licence is included; and
• No changes, adaptations, or derivative works are made to the pathway or the written guidelines.

This licence ensures the integrity of the clinical content while allowing wide dissemination.

Full licence text

Publications

Read our first publication paper here: 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

INTEND Newsletters

June 2025

February 2025

Videos

Patient and Public Involvement and the INTEND Project

Watch our video about the collaborative work we completed with parents/carers as part of INTEND

The Struggles of Living with Tourette Syndrome

Watch our short animation capturing the lived experience of people struggling to access healthcare services for their/their child’s tics.

Trigger warning: references to suicide

Advisory viewing age: 15+

Learn more about the CANDAL team collaborating with Tourettes Action to address gaps in service provision

Exploring the INTEND Project podcast episode from the Association for Child & Adolescent Mental Health

In this In Conversation episode, Dr Seonaid Anderson is joined by Dr Maddie Groom to discuss the research project INTEND, alongside a focus on tics and Tourette Syndrome, exploring the evidence-based research, education, treatments, and the influences of the pandemic and social media. Listen to the podcast episode on the ACAMH website or wherever you listen to your favourite podcasts, just search for ‘ACAMH’.

If you would like to find out more about this study, or get involved as a service user, healthcare professional, or a commissioner/service lead, please email This email address is being protected from spambots. You need JavaScript enabled to view it..