Objective
To improve outcomes for vEDS patients when accessing emergency care.
Introduction
Raising awareness of vascular EDS amongst Health Care Professionals (HCPs) has been of huge concern for the vEDS community for many years. In a survey conducted by Annabelle's Challenge in 2018, 91% of individuals said the main challenges they faced with vEDS is a lack of awareness amongst medical professionals.
We now feel it is time to address this gap in the service we provide at Annabelle’s Challenge and in June 2021 the Emergency Care Project (ECP) was launched.
ECP Working Group
Whilst we know that this project is a huge undertaking, we have devised a working group specifically tasked to plan and deliver this project alongside Annabelle's Challenge and the EDS Service.
The working group is voluneteer led by Clare Sadgrove who joined the charity in June 2018 and has a diagnosis of vascular EDS. Clare took on the role of volunteer ECP Chair in December 2021 and the group is supported by genetic counsellors representing the EDS Service in Sheffield and London.
Thank you to Clare S, Gemma, Jacqui, Clare E, Jessica and Juliette for being part of the ECP working group and helping to improve patient outcomes in emergency care.
It's not "just hypermobility"
The Rare Disease Podcast 4 Medics
Vascular Ehlers-Danlos Syndrome (vascular EDS / vEDS) is just one of 13 sub-types of a group of connective tissue disorders called Ehlers Danlos. Due to a deficiency in collagen the walls of blood vessels are prone to dissection, rupture or aneurysm with potentially fatal consequences. However, considering the serious complications of vascular EDS its presentation can be subtle and hard to spot.
Clare, Jared and Dr Paddy Coughlin explain how patients with vascular EDS may present and what challenges they face.
Early Observations
Based off initial research, survey results and patient self-advocacy workshops we have evaluated the patient pathway from initial emergency through to discharge across NHS England. It was clear from the results of the survey that due to the rarity of vEDS, its presentation - which can often be subtle - was widely misunderstood:
We learned from the responses that there are 5 main themes that influence your ability to be good self-advocates: background knowledge of vEDS, approach to routine medical care, emergency preparedness, and mental and physical well being.
ECP focus areas
The group will be focusing on 3 main areas: Raising Awareness, Self-Advocacy and Emergency Preparedness:
VEDS Information Pack
The latest version of the VEDS Information Pack is now available exclusively to Annabelle's Challenge vEDS members and patients of the EDS Service. The pack includes vEDS management advice including: