Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of integrating (a) Ehlers-Danlos syndromes and (b) hypermobility spectrum disorders with overlapping conditions such as (i) Postural Orthostatic Tachycardia Syndrome, (ii) Myalgic Encephalomyelitis and (iii) Long Covid in (A) NHS service specifications, (B) long-term condition strategies and (C) clinical frameworks.

The Government recognises that hypermobile Ehlers–Danlos syndrome (hEDS), hypermobility spectrum disorders (HSD), and overlapping conditions such as postural orthostatic tachycardia syndrome, myalgic encephalomyelitis, also known as chronic fatigue syndrome, and Long Covid can have a significant impact on people’s health and quality of life, and that symptoms may be complex, multisystem, and fluctuate over time.

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, cardiology, neurology, and mental health services.

There is no single national service specification or clinical framework covering these conditions, reflecting the variability of presentations and the absence of definitive diagnostic tests for some conditions. 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.