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 (a) support research into and (b) improve healthcare for young people with Ehlers Danlos Syndrome.

A primary goal of the Complex Ehlers-Danlos Syndrome (EDS) Service, which is commissioned by NHS England, is to educate clinicians about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare condition 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.

Integrated care boards (ICBs) have a statutory responsibility to commission services which meet the needs of their local population, 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.

EDS is diagnosed by a combination of GPs, specialist clinicians, and the national diagnostic service for rare types. GPs can diagnose common types like hypermobility EDS and may refer to a specialist if needed. We are investing in additional capacity to deliver appointments to help bring waiting lists and times down. The Elective Reform Plan, published in January 2025, sets out the specific productivity and reform efforts needed to return to the constitutional standard, that 92% of patients to wait no longer than 18 weeks from referral to treatment, by March 2029.

Additionally, the shifts outlined in our 10-Year Health Plan will free up hospital-based consultants’ time by shifting care from hospitals to communities, utilising digital technology to reduce administrative burdens, and promoting prevention to reduce the onset and severity of conditions that lead to hospital admissions. This includes expanding community-based services, employing artificial intelligence for productivity, developing integrated neighbourhood health teams, and investing in digital tools and data. These shifts will allow specialists to focus on more complex cases of EDS, enabling earlier identification and management, and improved patient outcomes.

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including EDS and any related conditions. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.