Will the Minister confirm whether the NHS provides a ketogenic team of nurses and dieticians the treatment of GLUT1?
Support for a ketogenic diet, including those with GLUT1 disease is currently provided in Bristol and Alder Hey Children’s Hospitals, accessible via an individual patient funding request through the Welsh Health Specialised Services Committee (WHSSC).
WHSSC is responsible for the joint planning of specialised and tertiary services on behalf of health boards in Wales, including ketogenic diet support.
WHSSC is working with the Daisy Garland Trust to establish a dietician post within the Children’s Hospital for Wales. It is also working with paediatric neurology professionals to explore whether a paediatric ketogenic service can be established in south Wales. This would involve repatriating patients from the Bristol service and providing a more sustainable service closer to patients’ homes.