Ehlers-Danlos Support UK and University College London Hospitals NHS Foundation Trust (UCLH), have announced (26 July 2019) that they will co-fund the world’s first Ehlers-Danlos syndrome (EDS) nurse. The two organisations have together pledged £119,500, for a two-year pilot. The nurse will be part of a four-person specialist team at UCLH, which sees approximately 600-700 new EDS cases a year.
The care pathway for an EDS patient is extremely complex. For example, one recent patient attending the clinic at UCLH had 97 appointments over a period of one year and was under seven different hospitals. All too often, people with EDS attend multiple appointments with no clear outcome because knowledge about and treatment of EDS greatly varies. Ehlers-Danlos Support UK and UCLH believe that once the EDS specialist nurse is in post, and people with EDS are referred to the UCLH Hypermobility Clinic, patients will benefit from better coordinated care so that when they return to their local area they have one specialist point of contact and move from a fragmented care pathway to a streamlined one.
This will both improve the local management of people’s EDS and reduce the number of hospital appointments they need. At the same time, by contributing to the understanding of the prevalence of systemic EDS symptoms and tracking the healthcare needs of these patients, the EDS nurse will be able to provide valuable input into the ongoing evolution of EDS patient care in the UK.
UCLH consultant rheumatologist Dr Hanadi KazKaz said: “This is an important step in ensuring that EDS patients can access joined-up care and be signposted to a specialist clinic which can greatly improve their treatment plan. We are delighted to be able to offer this additional specialist expertise to patients in partnership with Ehlers-Danlos Support UK.”
Kay Julier, CEO, Ehlers-Danlos Support UK said: “Being able to fund the world’s first EDS nurse is a real milestone in how EDS is diagnosed and treated. Despite affecting at least one in 5,000 people, it remains misunderstood and the result is that people with EDS experience extremely cumbersome and frustrating care. Thanks to the funding from the EDS community who have donated and fundraised over the years, we are now in a position, through our partnership with UCLH, to affect what we hope will be real change.
“The EDS nurse will be able to ensure a much more effective post diagnosis care pathway for patients. By also reducing the cost of care to the NHS we are hopeful that after the trial the NHS will be willing to fund the position long term, and we are looking at how we can seed fund similar positions across the UK,” Julier concluded.
The Ehlers-Danlos syndromes are a group of genetic connective tissue disorders, which impact the whole body. One type of EDS (vascular EDS) is life-limiting. Those suffering with EDS can have chronic pain, frequent joint dislocations, fatigue, allergy-like symptoms, gut, bowel and bladder problems as well as sudden collapses. Currently in the UK, the average time to diagnosis is 10 years. It is hoped that interviews for the role will commence on Monday 19th August 2019, with a view to the successful applicant being in place by early November 2019.
If you would like to apply for the role, please visit: jobs.uclh.nhs.uk.