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 commission NHS services to help people with (a) hypermobile Ehlers-Danlos syndrome and (b) hypermobility spectrum disorders receive a multidisciplinary, coordinated approach to care.

One of the four priorities of the UK Rare Diseases Framework is better coordination of care for rare diseases, such as hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders, with rare disease action plans ensuring delivery. Significant steps were taken during 2022 to deliver on the commitments made in England’s first Rare Diseases Action Plan. This includes the creation and rollout of a toolkit for virtual healthcare consultations to help people with complex, multi-system rare diseases access multiple specialists without needing to travel.

In England’s 2023 Action Plan, NHS England will be taking forward work to improve the way in which services for rare diseases are commissioned, placing patient voice at the centre of service delivery, and ensuring coordinated access to specialist care, treatment, drugs, social care, mental health and special educational support.