INTEND - ImproviNg Tic services in EnglaND

Posted on 23 June 2026 by Pippa McClounan

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A summary of a research study supported by TA

A team of researchers at the University of Nottingham conducted a research project which aimed to improve access to care for children and young people with tic disorders.

Why was the research done?

Being able to access NHS services for tics is crucial for helping children and young people manage their tics and maintain healthy, positive lives. It is therefore important that local, efficient services for tics are available to all.

The INTEND study (ImproviNg Tic services in EnglaND) was funded by the National Institute for Health and Care Research under the Research for Patient Benefit Programme and aimed to develop a care pathway for children and young people with tics.

What did the researchers do?

The study had four main areas of work:

1) Sending requests for information to local NHS organisations across England to gather data on tic service provision, including data on referrals, assessment and treatment

2) Conducting a national survey of healthcare professionals to explore their experiences of providing assessment and treatment for young people with tics

3) Surveying a panel of experts in the field of tics and Tourette syndrome to reach agreement on essential features of an effective care pathway

4) Combining these study findings with input from healthcare professionals and members of the lived experience community to develop the pathway and its accompanying implementation guidelines

What were the main findings?

Responses from NHS organisations demonstrated that tic services 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. A majority of 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 and healthcare staff require more guidance and support.

Through the expert survey and a final 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. 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. Click here to watch a video about our work with the INTEND PPI panel.

What’s next?

We are now planning to carry out more research to test the INTEND Pathway in different services throughout England to see whether it improves access to effective, standardised care for children and young people with tics.

Where can I find out more?

The INTEND Integrated Care Protocol (pathway) and accompanying written guidelines have been finalised and can be viewed here.

Click here to read our first paper reporting FOI and national survey findings

Click here to read our second paper on the process of developing the pathway and guidelines

You can also read about other areas of work in tics and Tourette Syndrome by looking at our website

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