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 improve understanding within the NHS of Hypermobile Ehlers-Danlos Syndrome and other hypermobility-related syndromes to improve (a) diagnostics and (b) clinical pathways.

NHS England has asked the Society of British Neurological Surgeons to look at producing guidance on surgical intervention but has no plans to develop any further guidance on treatment for hypermobile Ehlers-Danlos syndrome at this time. We would expect clinicians to use their professional knowledge, clinical judgement and integrity when making a diagnosis or treating patients for any medical condition.

The United Kingdom implements an overarching strategy recognising and responding to the needs of all those affected by rare diseases. The UK Strategy for Rare Diseases is available at the following link:

https://www.gov.uk/government/publications/rare-diseases-strategy