Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what plans her Department has to improve training and clinical awareness of Ehlers–Danlos syndrome among GPs and primary care clinicians to support earlier recognition and referral.

The Department recognises that Ehlers-Danlos syndromes (EDS) are complex, multi-systemic conditions that can be challenging to diagnose. While no formal assessment of average diagnosis times has been made, the Department is aware that many patients experience significant delays for a confirmed diagnosis. These delays are primarily due to low awareness among clinicians, the absence of a single diagnostic test for hypermobile EDS, and the need for multidisciplinary input.

For rarer genetically confirmed types of EDS, NHS England commissions a national diagnostic service. In addition to investigating and diagnosing complex and rare EDS types, the national diagnostic service supports general practitioners (GPs) and specialists in secondary and tertiary care by issuing detailed reports with management recommendations, developing guidelines and pathways of care, and offering clinician-to-clinician advice. It helps GPs by clarifying referral pathways and guiding ongoing care, while supporting hospital specialists through access to genetic testing, multidisciplinary input, and best practice guidance. This collaboration ensures accurate diagnosis, reduces unnecessary investigations, and promotes coordinated care across all levels of the health system, helping to avoid inappropriate referrals and ensuring that patients are able to access the correct specialist care efficiently.

We also recognise that GPs can find it challenging to diagnose EDS because these conditions share symptoms with many other disorders. The EDS GP Toolkit, developed by the Royal College of General Practitioners in partnership with Ehlers-Danlos Support UK, helps GPs in managing EDS by improving recognition, diagnosis, and management of these multi-system disorders. The toolkit aims to reduce delays in diagnosis and helps to prevent long-term disability through appropriate early management.

The Department is engaging with patient organisations to identify further opportunities to streamline referral processes and ensure equitable access to assessment and care.