Emergency Care Project
Emergency Care Project (ECP)
Supporting improved emergency care for people with vascular Ehlers‑Danlos syndrome (vEDS)
Overview
The Emergency Care Project (ECP) has been established by Annabelle’s Challenge to improve outcomes for patients with vEDS when accessing emergency and acute care services. VEDS is a rare genetic condition associated with significant clinical risk, and timely recognition in emergency settings is essential to ensure safe and appropriate management.
A survey undertaken by Annabelle’s Challenge in 2018 identified that 91% of respondents reported limited awareness of vEDS among Health Care Professionals (HCPs) as a major barrier to receiving effective care. The ECP aims to address this gap by providing clear, accessible resources for both patients and clinicians.
Project Development
The Emergency Care Project was launched in June 2021 and has since delivered several key resources designed to support emergency departments, acute medical teams and inpatient services. These include:
- VEDS Emergency Pack - A patient‑held resource containing essential information for emergency situations.
- Hospital Inpatient Alert Document - A clear, concise clinical summary to support safe inpatient management.
- Emergency Care Resources - A growing library of tools and guidance for emergency departments, paramedics and hospital teams.
These resources help ensure that vEDS patients receive appropriate care quickly, reducing risk and improving outcomes.
Prepared patients. Informed clinicians. More tomorrows.
ECP Working Group
Our Working Group
The Emergency Care Project is overseen by a dedicated working group established to plan, coordinate and deliver project activity in collaboration with the EDS National Diagnostic Service.
The group is chaired by Jacqui Fish, who joined Annabelle’s Challenge in 2014 following her son’s diagnosis of vascular EDS. Jacqui assumed the role of Group Chair in January 2025.
The working group includes genetic counsellors from the EDS Service in Sheffield and London, ensuring that project outputs are clinically robust and aligned with national specialist expertise.
How We Work
The ECP working group usually meets monthly to:
- Review progress against project objectives
- Develop and refine emergency care resources
- Identify opportunities to strengthen clinical pathways
- Support engagement with NHS services and clinicians
Our goal is simple: to ensure every vEDS patient receives safe, informed, and timely care when it matters most.
What We Focus On
The Emergency Care Project (ECP) works on three main areas to help people with vEDS feel safer, more confident and better supported when they need emergency care.
1. Raising Awareness
Many doctors and nurses don’t often come across a vEDS patient, which means they may not understand the severity and complexity of it straight away. The ECP aims to help change this by:
- Sharing clear information about vEDS with hospitals and emergency teams
- Helping medical staff understand the challenges people with rare conditions face
- Encouraging better communication and awareness so patients get the right care quickly
2. Self‑Advocacy
Being able to speak up for yourself, or for your child or family member can make a big difference in an emergency. The ECP supports patients and carers by:
- Creating easy‑to‑use resources that explain vEDS clearly
- Helping people understand what information to share in an emergency
- Making sure everyone knows where to find these tools
3. Emergency Preparedness
Having the right information ready can save time and help doctors make safer decisions. The ECP encourages patients and carers to:
- Keep important medical information easily accessible, on paper and on your phone
- Wear a medical alert bracelet so emergency teams know you have vEDS
- Use the Emergency Information for Medical Professionals document written by the EDS National Diagnostic Service
- Carry the vEDS emergency wallet card with key details for medical staff
- Ask your GP about adding an ambulance marker to your record
Self-Advocacy
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:
- Nearly half of respondents felt that their vEDS diagnosis and concerns were not taken seriously in A&E or their treatment adjusted accordingly.
- Many vEDS patients described having to explain the condition themselves since so few HCPs know about the condition.
- Over 2/3rds described being discharged while still in acute pain.
- Those who said they had a good experience felt included in the decision making process.
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.
- You told us repeatedly that "knowledge is power”
and
“to educate yourself, as many doctors will never have heard of vEDS”.
- You recommended learning to know your own body and listen to it, to know your limits, triggers and symptoms, to know how to adjust, when to self-manage, and when to get help.
- You said to learn from others who can pass on their experience and, in turn to share your story so others can learn – whether to HCPs or other people with vEDS.
A unique collaborative model providing supportive and self-advocacy tools to the rare disease community.
Juliette M. Harris, Jacqui Fish, Jared Griffin, Gemma Hasnaoui, Clare Stacey, Neeti Ghali, Fleur S. van Dijk.
This is a great example of collaborative work of the EDS Service, a highly specialised service commissioned by NHS England and Annabelle's Challenge Vascular EDS Charity including health care professionals, patients, carers and members of the emergency care project team.
The recommendations from this unique collaborative model include eight specific domains of self-advocacy: increasing knowledge of rare disease, taking care of mental well-being, taking care of physical well-being including routine care, the development of good working relationships between patients and health care professionals, information accessibility, emergency preparedness, taking part in education and outreach, and involvement in research and feedback opportunities.
Highlights
- Having a rare disease presents a unique set of health care challenges.
- Self-advocacy can help people with a rare disease get their needs met.
- Empowering health care professionals in rare disease is important.
- Specialised services are uniquely placed to help people with rare diseases.
- Collaborations between patients and health care professionals support self-advocacy.
