Emergency Preparedness

In an emergency DO NOT CALL 111

YOU MUST CALL 999

People with vascular EDS can be vulnerable in an emergency.

If you’re living with vascular EDS, it’s important to understand the possible complications that can happen because of your condition. This especially includes how to prepare you and/or a loved one for emergencies.

Emergencies can be scary for someone with vascular EDS. Will first responders know anything about your specific symptoms or diagnosis? How will emergency personnel know how to access information about vascular EDS?

Once you’re diagnosed with vascular EDS, you’ll want to ensure you’re treated correctly in a medical emergency. Thankfully, with help from our emergency care project team, your team of healthcare providers and support from Annabelle’s Challenge, you can be well prepared for any emergency with the tools and resources that are available.

What tools will help me prepare for an emergency? If you haven’t done so already, now is the time to create or update your VEDS Emergency Toolkit!

The VEDS Emergency Pack has been designed to give you the tools to help you advocate for yourself in the event of a medical emergency.

The resources in this pack have been developed from the lived experience of people affected by vEDS when accessing emergency care and is available to UK vEDS members of Annabelle's Challenge free of charge.

The resources available to UK vEDS patients only and are provided by Annabelle's Challenge / EDS Service / partner approved organisations.

If you are not a member of Annabelle's Challenge and would like to access all the available resources join here today, membership is free for life.

If you are an existing vEDS member of the charity and a patient of the EDS Service and require a replacement blue wallet card and/or additional resources for emergency preparedness, please complete the following vEDS resource request form:

In an emergency DO NOT CALL 111

YOU MUST CALL 999

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.

Patient Self-Advocacy- It’s a must for anyone who’s managing a serious or rare disease such as vascular EDS and for those who are caregivers. You’ll feel more prepared to self-advocate if you start learning all you can about vascular EDS, especially about how to get access to the medical care you need, and any scans that maybe required such as a CT or MRI.

It is not uncommon for someone with vascular EDS to attend their local Emergency Department only to find that the medical staff have never heard of the condition, they might suggest they know about Ehlers Danlos syndrome (EDS) when in fact they probably know absolutely nothing about the vascular type.

You and/or your caregiver will need to become patient advocates. Advocacy is important because it may reduce the chances of errors, incorrect discharge and harm to a vEDS patient. Primarily, nurses may need to speak on behalf of you and/or your caregiver and collaborate with the healthcare team.

Being a self-advocate means learning how to be direct about what you think you may need in terms of your treatment plan. It also means listening and learning from your health care providers, all of whom are experts in their fields. From these discussions, you and your medical team can develop a plan that works for you. Being a self-advocate also means asking for help when you need it.

Be confident, voice your opinion, be firm and be positive.

Every 3 metre square of the world has been given a unique combination of three words. Used for e-commerce and delivery, navigation, emergencies and more.

Get help faster in an emergency

When it’s hard to describe where you are in an emergency, you only need to read out three words for 999 to know exactly where to find the incident.

To find you more easily in an emergency, many UK Emergency Services are encouraging you to share your 3 word address.

How do I use what3words in an emergency?

1. Find the 3 word address for your current location on the free what3words app for iOS and Android. It works offline – ideal for areas with unreliable data connection.
2. Share your 3 word address over the phone to the call handler.
3. The emergency service can then coordinate a response directly to the exact location where help is needed.