A debate held this week in the Welsh Senedd has brought renewed attention to the lack of access to specialist healthcare services for children and young people with tic disorders and Tourette syndrome across Wales.
The debate, led by Lee Waters MS, outlined the significant distress experienced by young people and their families due to limited service provision, long waiting times, and the need for some families to fund treatment privately. Members of the Senedd heard first-hand accounts of the impact this gap in care has on education, mental health, and family life.
Responding on behalf of the Welsh Government Sarah Murphy MS, the Minister for Mental Health and Wellbeing, acknowledged these concerns and referenced ongoing work to improve care pathways. During the debate, research-led interventions developed in collaboration with NHS and academic partners were highlighted as potential solutions, including ORBIT, an NIHR-funded digital behavioural therapy programme for tic disorders. The Institute of Mental Health and MindTech (NIHR HealthTech Research Centre for Mental Health) were also referenced, signalling growing recognition of evidence-based innovation within Welsh policy discussions.
Researchers from MindTech have been working closely with Lee Waters MS, welcomed the debate as an important step forward. Over the past year, the team has met with Mr Waters to share findings from their national and international research programmes, including published studies in BMJ Mental Health, and to discuss how proven care pathways for tic disorders could be extended to Wales.
“This debate reflects what families have been telling us for years – that access to timely, specialist care for tic disorders in Wales is inconsistent and often unavailable,” said Professor Maddie Groom. “We are encouraged that research-informed approaches such as ORBIT are now on the radar of Welsh Government and health boards, and we look forward to presenting our evidence-based care pathway to support equitable access for young people across Wales.”
This discussion drew directly on the growing body of peer-reviewed evidence demonstrating effective, scalable interventions for tic disorders, including digital and hybrid models of care that can be delivered within NHS services.
The research team is now following up with Welsh Government officials and local health boards to explore opportunities for collaboration and implementation. Further discussions are planned to consider how existing NHS and NIHR-supported innovations could help address unmet need and reduce health inequalities for children and young people with tic disorders in Wales.