Provide dedicated funding for diagnosis/treatment of hypermobile EDS and HSD

There is a nationally commissioned NHS diagnostic service for rare types of Ehlers-Danlos syndrome but there is no dedicated funding for the diagnosis/treatment of the most common type (hEDS) and hypermobility spectrum disorder (HSD). We believe this should change.

We believe patients with hypermobile EDS (hEDS) and Hypermobility spectrum disorder (HSD) are not receiving the care and support they need through primary care, and too often do not receive referrals to specialists that have the expertise necessary to diagnose these conditions and advise on treatment. We believe this constitutes a lack of equality in access to healthcare for those with hEDS and HSD, which has resulted in unacceptable suffering for some patients.

Ehlers Danlos syndrome (EDS) comprises a group of inherited conditions affecting connective tissue. People with Hypermobile Ehlers-Danlos syndrome (hEDS) present with chronic pain and a range of associated symptoms. People may be diagnosed with a Hypermobility Spectrum Disorders (HSD) where their signs and symptoms related to hypermobility do not fully fit with hEDS, and other causes have been excluded. There is no specific treatment for either condition, but it is possible to manage many of the symptoms with support and advice.

NHS England (NHSE) commissions a national diagnostic service for certain rare types of EDS with a known or suspected genetic cause, which can be diagnosed using a genetic test. Unlike some rarer forms of EDS, there is no genetic test for hEDS or HSD, with diagnosis for these conditions based instead on an analysis of signs and symptoms. While the government recognises that people living with hEDS and HDS can face challenges with diagnosis and treatment, there are currently no plans for a nationally commissioned NHS diagnostic service for hEDS and HSD. Clinicians - such as GPs and expert physiotherapists - are being empowered to identify and diagnose hEDS and HSD through the use of validated approved clinical guidelines and toolkits.

This includes for hEDS and HSD. Support includes personalised multidisciplinary pain management strategies, delivered in primary and community services. These management strategies, proposed by rheumatologists and other clinicians, will require access to appropriate allied healthcare professionals and supportive self-management resources. Integrated Care Systems (ICS) also commission services to meet the needs of their local population, including those with hypermobility, usually via local physiotherapy services.