Ehlers-Danlos Syndrome and Hypermobility: Health Services
The question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve integrated care pathways for patients with Ehlers-Danlos syndromes and hypermobility spectrum disorders, including coordination between primary and secondary care services.
Answered by Mrs Sharon Hodgson
The Department recognises that people with Ehlers-Danlos syndromes (EDS), including hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD), often require coordinated, multi-disciplinary care across primary, community, and specialist services.
In England, services for these conditions are commissioned locally by integrated care boards, which have a statutory responsibility to meet the needs of their populations. Care is typically delivered through existing primary, community, and secondary care pathways, including musculoskeletal, rehabilitation, pain management, cardiology, neurology, and mental health services.
There is no single national service specification or clinical framework covering these conditions, reflecting the variability of presentations. These conditions are best managed through personalised, multidisciplinary care across existing services rather than a standardised national specification or framework.
More broadly, the Government’s 10-Year Health Plan sets out reforms to improve care for people living with long‑term and complex conditions, including greater use of multidisciplinary teams, improved coordination between services, and a shift towards more personalised, community‑based care, which will benefit people with hEDS, HSD and related conditions.
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