UK charity Ehlers-Danlos Support UK has launched a campaign calling on the government to provide much-needed NHS services for people with Ehlers-Danlos syndromes and other related conditions.
Ehlers-Danlos syndromes (EDS) are a group of genetic connective tissue disorders which are caused by gene mutations. There are several types of EDS that may share some symptoms including an increased range of joint movement (joint hypermobility), stretchy skin or fragile skin that breaks or bruises easily.
The #EnoughlsEnough campaign highlights the desperate situation for people in the UK affected by the most common types of these connective tissue disorders. Specialist NHS services are often not available for patients and primary and community care is not currently equipped to care for patients with rarer forms of EDS.
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 and those receiving inappropriate treatment.
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 EDS”.
Dr Hanadi KazKaz, Consultant Rheumatologist, University College London Hospitals said
“The lack of specialised services for patients 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.”
Dr V. Saravanan, Joint Clinical Lead for Rheumatology, Queen Elizabeth Hospital Gateshead added:
“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 all UK governments to fund or commission suitable NHS services for those with EDS.
For more information and to get involved with the campaign visit www.ehlers-danlos.org.