Ehlers-Danlos Syndrome: Health Services

Integrated care boards (ICBs) have a statutory responsibility to commission services which meet the needs of their local population, including for those with Ehlers-Danlos Syndrome (EDS). It is the responsibility of ICBs, working with clinicians, service users, and patient groups, to develop services and care pathways that meet patients’ needs.

When commissioning services, ICBs should take into account best practice guidance, such as that published by the National Institute for Health and Care Excellence (NICE). The NICE guideline Chronic pain (primary and secondary) in over 16s provides a framework for healthcare professionals to consistently and effectively assess and manage chronic pain in people aged 16 years old and over.

The 10-Year Health Plan will improve services for people with EDS and other long-term conditions across England by shifting care to the community with neighbourhood teams, expanding access to physiotherapy and rehabilitation, and using digital innovation to help patients self-manage and receive more integrated, personalised care. This approach aims to provide more proactive and accessible support by bringing services closer to home and making it easier for patients to access the help they need.

We will also publish a 10 Year Workforce Plan to ensure that the National Health Service has the right people in the right places, and with the right skills, to deliver the best care for patients, when they need it, including those with EDS. We have recently published a call for evidence to gather views from stakeholders on the specific professions, roles, skills, and training needed to implement the reforms outlined in our 10-Year Health Plan for England.