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 ensure that patients with suspected craniocervical instability in the context of hypermobile Ehlers-Danlos syndrome are not (a) misdiagnosed and (b) inappropriately managed.

The Government recognises the challenges faced by patients with hypermobile Ehlers‑Danlos syndromes (hEDS) and associated conditions, including suspected craniocervical instability (CCI), which can be complex to diagnose and manage.

In England, decisions about diagnosis, investigation, and treatment are made by clinicians based on individual clinical need and the best available evidence. In doing so they can access consensus-backed guidelines from the Ehlers-Danlos Society and Ehlers-Danlos Support UK, which can help differentiate benign joint hypermobility from true neurological instability, minimising misdiagnosis and ensuring safe, conservative management.

Integrated care boards are responsible for commissioning services to meet the needs of their populations, including access to appropriate specialist services. Where clinically appropriate, patients can be referred across specialties, including neurology, rheumatology, pain management, and neurosurgery, to support a multidisciplinary approach to care.

We will continue to work with NHS England and stakeholders to improve awareness, coordination of care, and clinical understanding of complex multi‑system conditions such as hEDS and CCI.