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 support the safety and appropriate care of patients with suspected craniocervical instability; what plans he has to improve access to appropriate imaging and specialist clinical review for such patients, including those with Ehlers-Danlos syndrome; and what assessment he has made of the potential merits of using patients’ lived experience to inform future policy development and service provision in this area.

Decisions on the assessment, diagnosis, and management of suspected craniocervical instability (CCI) are made by National Health Service clinicians on a case‑by‑case basis, drawing on established neurological, neurosurgical, rheumatology, and pain pathways. The Department has not issued specific national guidance on CCI, including in patients with Ehlers–Danlos syndromes (EDS). Responsibility for designing and commissioning pathways for rare or complex conditions rests with integrated care boards (ICBs), which are best placed to plan services that reflect local needs and available specialist expertise.

Patients with symptoms suggestive of CCI may be referred for appropriate diagnostic imaging, such as magnetic resonance imaging or computed tomography scanning, where clinically indicated. Access to imaging continues to expand through the Government’s programme of community diagnostic centres, which is increasing diagnostic capacity and supporting earlier identification of complex conditions as part of the wider 10‑Year Health Plan.

Where specialist clinical review is required, referral decisions are made by NHS clinicians, who can access expertise across neurology, neurosurgery, and associated sub-specialties. ICBs are responsible for ensuring that local pathways support timely referral to the most appropriate service.

The Department recognises the value of patients’ lived experience in improving the design of services for complex conditions. Department officials are working with patient groups to identify service gaps, improve equity of access, and inform future service development. This approach helps ensure that the needs and experiences of patients with suspected CCI, including those with EDS, are reflected in wider policy work.