Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether NHS England plans to commission dedicated multidisciplinary clinics for patients with Ehlers Danlos Syndrome.

NHS England commissions a national diagnostic service for complex and rare types of Ehlers-Danlos syndrome (EDS) via two specialist centres. This service supports patients with a suspected or confirmed diagnoses of rare types like classical, vascular, or kyphoscoliotic EDS, and aims to provide accurate diagnoses, minimise unnecessary tests, and provide management plans for local care providers to implement.

A primary goal of the Complex EDS Service, which is commissioned by NHS England, is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefits general practitioners (GPs), who are on the front line of patient care. Additionally, other resources like the EDS GP Toolkit, developed by the Royal College of General Practitioners and Ehlers-Danlos Support UK, is specifically designed to provide information and guidance to GPs.

For the more common types of EDS, diagnosis and management are handled locally and are commissioned by integrated care boards (ICBs), which have a statutory responsibility to commission services which meet the needs of their local populations, including for those with EDS. It is the responsibility of ICBs, working with clinicians, service users, and patient groups, to develop services and care pathways that meet patients’ needs.

Neighbourhood Health Centres, as outlined in the 10-Year Health Plan, will improve care for people with EDS by providing integrated, multidisciplinary community-based care and support. This approach will offer a more coordinated and holistic support system for people with complex conditions like EDS.