Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the impact on patient outcomes of there being no single NHS clinical specialty or department responsible for overseeing the care of people living with hypermobile Ehlers-Danlos syndrome and other Ehlers-Danlos syndromes; and whether he will consider establishing a nationally coordinated multidisciplinary care model for patients with these conditions.

Ehlers-Danlos syndrome (EDS) comprises a group of conditions that can affect multiple body systems and, as a result, care is often provided by a range of healthcare professionals depending on an individual's symptoms and clinical needs. NHS England commissions a national diagnostic service for rare and complex forms of EDS through two specialist centres, while the diagnosis and management of more common forms, including hypermobile EDS (hEDS), are commissioned locally by integrated care boards (ICBs).

The Government recognises that people with EDS can experience complex, multisystem symptoms that may require coordinated care. However, there are currently no plans to establish a nationally coordinated multidisciplinary care model specifically for hEDS and other forms of EDS. Responsibility for developing local services and care pathways rests with ICBs, working with clinicians, patients, and patient groups to meet the needs of their populations. NHS England keeps service specifications and clinical frameworks under review to ensure they reflect emerging evidence and patient need.