Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will take steps to promote and enable surgical intervention to treat people with hypermobile Ehlers-Danlos syndrome.
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