Tourette’s syndrome (TS) in adults can be associated with mobility difficulties, unemployment issues, lower socioeconomic status, poorer psychosocial functioning and diminished quality of Life. However, no studies to our knowledge have assessed these additional needs and the extent to which this population is accessing and receiving social care.

This project is seeking to understand the difficulties adults with TS experience and their access to social care. It will also explore how receiving care affects an individual’s everyday life, personhood and embodiment. It’s objective is to provide data which will inform current policy and practice regarding TS.

The study will be small scale and exploratory. An England-wide online survey of about 50 adults with TS will be followed by in-depth interviews from a subsample; 10 interviews with those who receive care and 10 interviews with those who do not. Data will be analysed using statistical and qualitative methods.