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 help increase the availability of treatments for Ehlers-Danlos syndrome in Cornwall.

Integrated care boards (ICBs), including the Cornwall and Isles of Scilly ICB, are responsible for the commissioning of treatment services for people with Ehlers Danlos syndrome (EDS). NHS England commissions some specialist services for patients with rare forms of EDS, which are currently delivered by two centres in England, namely the London North West University Healthcare Trust and the Sheffield Children’s NHS Foundation Trust. The complex EDS service provides diagnosis and advice to referrers on the treatment and management of complex cases.

ICBs, including the Cornwall and Isles of Scilly ICB, have a statutory responsibility to commission services which meet the needs of their local population. It is the responsibility of ICBs, working with clinicians, service users, and patient groups, to develop services and care pathways that are convenient and which meet patients’ needs.