Improving tic services in England (INTEND) survey data

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.