Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether his Department has considered establishing a national multi‑disciplinary team for neurosurgery for craniocervical instability (CCI) to improve outcomes for people with EDS, HSD and related conditions.

The Department recognises that people with Ehlers‑Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions such as postural orthostatic tachycardia syndrome, mast cell activation disorders, myalgic encephalomyelitis, also known as chronic fatigue syndrome, and Long Covid often experience complex, multisystem symptoms that require joined‑up care.

There is currently no single National Health Service service specification covering all these conditions collectively. However, care for people with EDS, HSD, and overlapping conditions is supported through a range of existing NHS service specifications, clinical guidelines, and frameworks. NHS England continues to keep service specifications and clinical frameworks under review to ensure they reflect emerging evidence and patient need.

The Department also recognises the concerns raised by patients and clinicians about craniocervical instability (CCI), particularly where it is suspected in people with EDS, HSD, and related conditions.

At present, the Department has not established a national multi‑disciplinary neurosurgical service for CCI. Neurosurgical services in England are commissioned by NHS England and are provided through established regional neuroscience centres, which already operate within multidisciplinary team arrangements to support complex spinal and neurological cases.

The evidence base for the diagnosis and surgical management of CCI remains limited and is an area of ongoing clinical debate. Decisions about service configuration, including whether to develop new national service models, must be informed by robust clinical evidence on effectiveness, safety, and patient outcomes, as well as by advice from NHS England and relevant clinical experts.

NHS England continues to keep specialised neurosurgical service arrangements under review, and patients with complex or rare presentations can be considered for assessment and management through existing specialist pathways. The Department will continue to work with NHS England and others to ensure that services for people with rare and complex conditions are safe, evidence‑based, and focused on improving patient outcomes.