Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve a) (a) the diagnosis of, (b) clinician training on and (c) access to treatment for patients with Ehlers-Danlos Syndromes and associated Cranio-Cervical Instability.

The Department recognises that Ehlers–Danlos syndromes (EDS) and associated cranio‑cervical instability (CCI) are complex conditions that can be challenging to diagnose and manage, and we acknowledge the concerns raised by patients and clinicians about variation in expertise and access to appropriate care.

Care for CCI is managed within existing specialised neurology and spinal pathways, delivered in centres with the appropriate expertise. NHS England works with clinical experts and integrated care boards to ensure that provision reflects the best available evidence and supports patients with complex connective‑tissue and neurological presentations. Decisions on surgical interventions for CCI must be based on individual clinical assessment, the strength of available evidence for benefit, and consideration of potential risks.

Once qualified, healthcare professionals are responsible for ensuring their own clinical knowledge remains up to date, and for identifying learning needs as part of their continuing professional development. Clinical teams are expected to use the best available evidence and follow national guidance when assessing and managing patients with complex connective tissue disorders.

The Department continues to engage with patient groups, charities, and Members of Parliament on the issues facing people with EDS and CCI. Insights from this engagement, including on the barriers patients encounter in accessing National Health Services, are informing our ongoing consideration of what further action may be needed to strengthen referral routes, support the dissemination of clinical resources, and consider where further system support may improve diagnostic confidence and care coordination.

The Department is aware of a number of individual cases where patients with suspected CCI have travelled overseas for imaging or surgery not routinely available in the NHS.