Tourette Syndrome (TS) is a complex inherited neurological condition for which there are no NICE guidelines, so no national clinical pathway to diagnosis or dedicated treatment pathway.

Young people with Tourette Syndrome experience involuntary vocal and motor tics that can wax and wane and change, making them unpredictable. They vary from seemingly “mild” but exhausting to more intense and potentially harmful. The repetitive nature of tics can also make them painful, and many people suffer from fatigue and problems sleeping.

The majority of people with Tourette Syndrome also experience co-occurring conditions including intrusive thoughts, anxiety, rages and ADHD, Autism and OCD. Many people with Tourette Syndrome try to suppress their tics, which are often misinterpreted as bad behaviour. As a consequence, many young people spend a lot of time out of the classroom, are often bullied and written off as a failure. They may struggle to make friends, leaving them isolated, lonely and anxious.

This three-year project will support children and young people with TS through an Annual TEENfest for teens with TS, providing them with the chance to ‘fit in’, make friends and build their confidence.

Tailored training and support sessions will be also provided for schools that may be in crisis/struggling to support a pupil with TS and online information about TS will be updated and improved.