Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to increase specialist capacity for complex and rare connective tissue disorders.

We recognise the significant challenges faced by those living with complex and rare connective tissue disorders such as Ehlers-Danlos Syndrome (EDS). Optimal management of these conditions is across services beginning with primary care, including various services and pathways within primary and intermediate care, which allows for appropriate identification of those patients who have the rarer and more complex manifestations and appropriate resources for them. Integrated care boards have a statutory responsibility to commission services which meet the needs of their local population, including for those with complex and rare connective tissue disorders.

A primary goal of the Complex EDS Service, which is commissioned by NHS England, is to educate referring doctors about the diagnosis, investigation, and management of patients with complex and atypical forms of EDS. While the service focuses on rare types and accepts referrals from secondary and tertiary care, its development of guidelines and educational initiatives also benefits general practitioners who are on the front line of patient care.

Under the UK Rare Diseases Framework, the government is working to improve coordination of care across all rare conditions including rare connective tissue disorders.