UK charity The Ehlers-Danlos Support UK today launched a hard-hitting campaign calling on government to provide much-needed NHS services for people with Ehlers-Danlos syndromes and related conditions called hypermobility spectrum disorders.
The #EnoughlsEnough campaign highlights the desperate situation for people in the UK affected by the most common types of these connective tissue disorders. A specialist NHS service for rarer types of Ehlers-Danlos syndromes (EDS) is not available to people with the most common type and GPs and hospital doctors have nowhere to refer their patients to.
This has led to inequalities in access to healthcare for those affected and is causing anxiety, distress, and unnecessary pain and suffering for those waiting for diagnosis, those on inappropriate treatment pathways, and their families.
Historically, those showing signs of hypermobile Ehlers-Danlos syndrome (hEDS) or hypermobility spectrum disorders (HSD) have been referred to rheumatology departments. In 2021, rheumatology departments in England and Wales were directed to stop seeing these patients
In favour of their diagnosis and management in primary care. Primary and community care is not currently equipped for this role.
Kay Julier, The Ehlers-Danlos Support UK’s Managing Director said “For years, we have been working behind the scenes, trying to help improve the situation but no-one is listening. We really feel enough is enough! It’s time to make a big noise about the inequalities faced every day by people with hEDS and HSD”.
Dr Hanadi KazKaz, Consultant Rheumatologist, University College London Hospitals said “The lack of specialised services for patients with hEDS often results in delayed diagnoses, inadequate treatment options, and a lack of understanding among healthcare providers. This can lead to prolonged suffering, decreased quality of life, and unnecessary disability.”
D.r V. Saravanan, Joint Clinical Lead for Rheumatology, Queen Elizabeth Hospital Gateshead said “This campaign is necessary not only to improve the health outcomes for patients, but in equal measure to reduce unnecessary health and social costs borne by the patients and the NHS. With limited access to planned care, this patient group is unable to study, train and work and often needs unpaid carers. Most of their healthcare visits are unplanned, often via emergency departments.”
The #EnoughlsEnough campaign calls on the governments in England, Scotland, Wales and Northern Ireland to fund or commission suitable NHS services for those with hEDS and HSD. It also calls on the governments in Wales and Northern Ireland to commission suitable NHS services for those with rare types of EDS.
People can support the #EnoughlsEnough campaign by signing the petition in their country and using the charity’s online application to email their local MP. People with the conditions can create a social media graphic to create awareness around the campaign.