Tourette's Syndrome Learning Day

November 2022 was the month for RCPsych Wales’ first Tourette Syndrome Learning Day for clinicians. The event was well attended by various professionals, including the Deputy Minister for Social Services, Julie Morgan.

Dr Amani Hassan, Consultant Child and Adolescent Psychiatrist (CTMUHB) and Chair of the Child and Adolescent Faculty RCPsych Wales, kicked off the day by briefly highlighting the current difficulties individuals with tic disorders face on their path to diagnosis. She acknowledged the keenness that many clinicians possess to make the journey easier for these individuals, however they need more support to make this a reality.

Our first speaker was Dr Andrea Cavanna, a Consultant Behavioural Neurologist and Associate Professor in Neuropsychiatry in Brimingham, who has conducted extensive research into Tourette Syndrome whilst working with other international experts in this field. With his smooth Italian accent, he guided us through past and current literature on all things Tourette Syndrome and other tic disorders, from neuroanatomy to diagnosis and treatment. Tics are the most common hyperkinetic disorder in children, and Tourette Syndrome has an international prevalence of 1%. Given this it is unsurprising that interest in this area can be noted as far back as 1975 in a letter from A Lurija to O. Sacks that stated, “This is truly of a tremendous importance.”

Up next was Joe Kilgraff, a neurodevelopmental advance nurse and behavioural therapist, who co-runs a specialist CAMHS tic disorders clinic in Nottinghamshire. He explained how to deliver effective psychoeducation about Tourette Syndrome and other tic disorders, as this can increase the likelihood of engagement with behavioural therapy.  In his experience, for some young people psychoeducation and reassurance can be all they need to live in harmony with their tic disorder. Habit reversal therapy and exposure response prevention are behavioural treatments that can be used to reduce the occurrence of tics. Joe discussed how these, and other behavioural interventions, can interrupt the currently proposed brain pathways for tic genesis and expression, and thus can prevent or reduce tics.

The day was rounded off by Seonaid Anderson, a Chartered Research Psychologist and Freelance Neurodiversity Consultant from Belgium, who has worked with Tourette’s Action in the past. A Tourette’s Action Survey showed that 56% of people waited more than a year to receive their diagnosis and 19% more than 3 years, highlighting how problematic the journey to diagnosis and treatment can be for many. Seonaid spoke about the lack of NICE guidelines and established pathways for Tourette and other tic disorders, as well as the lack of trained behavioural therapists. From her experience, current services across other developed nations vary significantly with some actively encouraging improvement and others having no services at all.

These lectures, and other interesting conversations that were had over the day, left delegates minds fuelled with thoughts of “so what next...?”.