Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that people with (a) hypermobile Ehlers-Danlos syndrome and (b) Hypermobility spectrum disorders are able to access treatment.

Patients suspected of having Ehlers Danlos Syndrome (EDS) are assessed and diagnosed in United Kingdom regional clinical genetics clinics and various other secondary and tertiary specialty clinics such as dermatology, rheumatology, paediatrics, vascular surgery, gastroenterology and neurology. Patients with EDS may be looked after by their general practitioners (GPs), within community services, in secondary care and in tertiary care.

Integrated care boards commission secondary care services for patients who have EDS and NHS England commissions some specialist services for patients with EDS. A service for patients who have complex EDS is delivered by two centres in England, London North West University Healthcare Trust and Sheffield Children’s NHS Foundation Trust. The Complex EDS service provides diagnosis and advice to referrers on treatment and management of complex cases.

NHS England does not hold information centrally on Hypermobility Spectrum Disorders. Integrated care systems commission services to meet the needs of their local population, this includes commissioning services for Hypermobility Spectrum Disorders, usually via local physiotherapy services.