This petition was submitted during the 2019-2024 parliament
Petition 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.
More details
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.
This petition is closed This petition ran for 6 months
Government responded
This response was given on 5 July 2023
There are no plans for a national service for diagnosis or treatment of hEDS and HSD. Our plans for musculoskeletal conditions will be outlined in the major conditions strategy.
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.
In terms of treatment, NHSE is exploring improving access and personalised support for those with chronic pain, closer to home in the community, in line with the ambitions of the 2021 Getting it Right First Time (GIRFT) rheumatology report, and the NICE guidance for chronic pain (primary and secondary) in over 16’s. 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.
Given that most with hEDS and HSD report chronic pain attributable to the musculoskeletal (MSK) system, their healthcare needs are similar. The Department has been working closely with NHSE with regard to addressing inequalities in MSK health and access to services to support the management of MSK conditions. The major conditions strategy will set out a clear vision for six major groups of conditions including MSK conditions, covering treatment and prevention.
Department of Health and Social Care