Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to include a) Ehlers-Danlos syndromes and b) hypermobility spectrum disorders in plans to improve the delivery of treatment for people with chronic illnesses.

The National Health Service recognises that people with chronic conditions, including Ehlers–Danlos syndrome (EDS) and hypermobility spectrum disorders (HSD), require personalised, coordinated care. EDS comprises 13 rare inherited connective-tissue disorders affecting multiple body systems. Hypermobile EDS (hEDS) is the most common sub-type and, along with HSD, is frequently associated with chronic, high-impact musculoskeletal pain. Patients may be managed across primary care, community services, and secondary care services, and diagnosis and management of the most complex cases is supported by the nationally commissioned diagnostic centres in London and Sheffield.

The Getting It Right First Time (GIRFT) Rheumatology report published in July 2021 highlighted that non-inflammatory musculoskeletal conditions, such as hypermobility-related chronic pain, benefit most from multidisciplinary, personalised pain-management strategies delivered in primary and community care, rather than routine referral to rheumatology. The GIRFT Chronic Pain workstream, introduced in 2025, is reviewing service delivery across all care settings to improve access, equity, and outcomes for patients with persistent pain.

These initiatives align with wider NHS and Government plans to improve care for people with chronic illnesses by promoting integrated, proactive, and person-centred management, including multidisciplinary support in primary care networks, enhanced specialist input where needed, and better access to evidence-based interventions. For people with hEDS and HSD, this means earlier recognition, holistic management of chronic pain, and coordinated pathways that reduce unnecessary specialist referrals while ensuring complex cases are referred to appropriate tertiary services.