For Tourettes Awareness Month we’ve put together some of our current research into tics and Tourettes, highlighting the difficulties people face when trying to access care and treatment for this often misunderstood condition.

Tourettes in the UK today

Tourette Syndrome is a chronic tic disorder which causes significant difficulties across all areas of life, including school/work, home, and relationships. Those with the condition experience stigma and misunderstanding from the general public, which can lead to poor self-esteem and mental health problems, including anxiety, depression, and suicidality. This stigma and lack of understanding is also present in healthcare services, with no clear referral process and a lack of specialist provision.

Many people who have tics go to their GP first for advice and support, but there’s currently no official guidance in the UK on what a GP should do to help people with tics, or who they can refer people to for specialist support. This has meant that the care offered to patients can vary significantly across the UK.

Understanding patients’ and parent/carers’ experiences of accessing care for tics from their GP: a UK online survey

Dr Kareem Khan and Dr Charlotte Hall are leading a study investigating what happens when people seek help for tics, including the experience of visiting a GP and the onward referral process.

It is hoped that findings will go on to inform practice and improve the experiences of people seeking help in future. This research will also contribute towards Christina Marino’s Masters qualification in her MSc Mental Health: Research and Practice degree.

If you’ve tried accessing support for tics from your GP, you can find the online survey here. If you’ve tried to access services for tics as a parent / carer, you can find the online survey here.

Experience of self-identification, diagnosis, and support for adults with tic disorders in the UK 

The journey to diagnosis is being investigated by researchers at the University of Nottingham and University of Hertfordshire, including PhD student Danni Phoenix-Kane under the supervision of Dr Bethan Davies.

They would like to hear from adults who self-identified or obtained a diagnosis of tic disorders after 18 years of age. The study aims to understand diagnostic or self-identification experiences, and the barriers, facilitators, medical mechanism, and resultant support structure for tic disorder diagnosis in adulthood in the UK and inform improvement in available services. 

If you are over 18 and would like to share your experience, find out more about the study and the online survey on the study webpage.

A qualitative study exploring the lived healthcare experiences in children, young people and adults with tic disorders and their families

As we continue to support our charity partners in increasing awareness and understanding of living with tics and Tourettes, we are working with focus groups to co-produce visual materials to share with the public. We’re inviting people with lived experience of tics to share their stories of trying to access help and support. This will help us to understand where services can improve, and to work with our project partners to create easily presentable and shareable materials, such as infographics and a video. Whilst the target audience for these materials is the general public, they are also expected to be valuable for health professionals, MPs, and those in a position to influence change. At the moment, we’re still inviting people to join our focus groups. If you are interested in sharing your experience, more information is available on our online project page.

Tourettes Awareness Month runs from 15 May to 15 June 2022. Find it on social media using the hashtags #ThisIsTourettes and #ItsNotWhatYouThink. For more information, visit the Tourettes Action website.