Self-Advocacy Toolkit

What can you do?

• Feel informed / prepared, know what information to share and how to explain the diagnosis to others if you need to.

• Look after yourself – find your support, look after your mental health, maintain regular gentle exercise.

• Set your goals, vEDS may change some of your plans but it shouldn’t stop them. Think about what you want to do and what you can do and make your new wish list.

• Annabelle’s challenge have lots of resources to help you. Go to the support groups and meet other people. Join the facebook group, get involved, fundraise. Share your experiences, not just for your own benefit but to help others, it really does make everything easier to deal with. Support as well as be supported.

Knowledge-sharing

What is Vascular EDS?

School Support

Talking to children

Mental Well-being

Counselling Service

Mental Health Resources

Support Groups

Emergency Preparedness

Emergency Toolkit

Ambulance Marker

Medic Alert

Education

Conference videos

Podcasts

Steering Group

Research

Research Projects

Surveys

NEEDS Study

Support

Benefits

Travel Insurance

Life Insurance

A unique collaborative model providing supportive and self-advocacy tools to the rare disease community

The recommendations from this unique collaborative model include eight specific domains of self-advocacy: increasing knowledge of rare disease, taking care of mental wellbeing, 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.

Knowledge of rare disease/knowledge sharing

People with rare and complex disease can find learning about the disease difficult especially if there are life-threatening or serious complications.

However, self-knowledge enables self-awareness, the knowledge of personal limitations, a recognition of when to seek medical help and advice in both routine and urgent care, and when and how to self-advocate.

Being prepared starts with building relationships with your health care providers.

GP – suggest 6 month visits to catch up even when you are well. Also allows for a health check up and a chat about how you are getting on. Builds bridges and means that when you need the help of the GP they feel in the loop. Update the GP on clinic visits, meds review, and get them to help with ambulance marker and TWIMC letter. Hopefully if you have a good relationship with them they also won’t charge for letters etc.

Medical receptionists – are your allies especially at the GP’s surgery. Talk to them, explain the condition and get them on your side. Never get angry or be rude to them, they are the gateway to your care. Always ask for help rather than demand.

Consultants – there may be many over a number of difference disciplines, hospitals and trusts. Make sure they all know about each other and clinic letters get copied to all as well as your GP. Important they all know what treatments and meds you are on.

Northwick Park/Sheffield – are great for the overall picture and help with consultants and just generally talking to someone who understands. In an emergency they are good to email for advice. Get to know them and keep them in the loop as well.

Emergency departments – talk to them, take in information whenever you go and share it liberally, emergency care information, AC leaflets etc. Offer to go in and give a presentation.

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.

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. Self-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.  

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

In case of emergency – feeling prepared

Emergency Information for Medical Professionals

The EDS Service have created an Emergency information for Medical Professionals available as an A4 document and blue wallet card. You must take these with you to ensure all medical professionals have information needed about vEDS in an emergency medical setting.

Give copies of the emergency information to the ambulance crew and/or hospital staff on arrival to the emergency department, every nurse and doctor who you come into contact with should be given this information. Consider storing this important information on your mobile device along with the hard copies provided to you.

Medic alert, set up with emergency letter/ A4 emergency information sheet. Explanation of when this will be useful – will be looked at if you can’t share the information yourself, won’t generally be looked at otherwise.

Ambulance marker, the role of this and how to set one up

How to explain the diagnosis to others

Talking to medical professionals and building rapport – what to say, who needs to know about your diagnosis: all medical/health/dental professionals. What information to share – may be helpful to pass on a copy of the A4 emergency sheet, as well as a recent letter. You will always know more about yourself than any medical professional so be sure to explain your history and diagnosis. People often confuse the different types of EDS, or assume someone has the most common subtype, so be clear, say vascular EDS rather than VEDS, and share written information.

Being prepared starts with building relationships with your health care providers.

GP – suggest 6 month visits to catch up even when you are well. Also allows for a health check up and a chat about how you are getting on. Builds bridges and means that when you need the help of the GP they feel in the loop. Update the GP on clinic visits, meds review, and get them to help with ambulance marker and TWIMC letter. Hopefully if you have a good relationship with them they also won’t charge for letters etc.

Medical receptionists – are your allies especially at the GP’s surgery. Talk to them, explain the condition and get them on your side. Never get angry or be rude to them, they are the gateway to your care. Always ask for help rather than demand.

Consultants – there may be many over a number of difference disciplines, hospitals and trusts. Make sure they all know about each other and clinic letters get copied to all as well as your GP. Important they all know what treatments and meds you are on.

Northwick Park/Sheffield – are great for the overall picture and help with consultants and just generally talking to someone who understands. In an emergency they are good to email for advice. Get to know them and keep them in the loop as well.

Emergency departments – talk to them, take in information whenever you go and share it liberally, emergency care information, AC leaflets etc. Offer to go in and give a presentation.

Sharing the information with other family members.

Acknowledge it can be hard getting a diagnosis and then finding out it may be relevant to other people in your family. It is ok to take a bit of time thinking about how to share the information, but it is important information for others to know. Yours genetic counsellor can help by providing a letter to pass on. Once the information has been shared, relatives can decide for themselves what to do with the information. If questions come back to you to that you don’t feel able to answer you can direct people to AC, or their GP. Could link to other websites on this?

Who do you need to tell?

Anyone involved in healthcare - medical professionals, allied health professionals, dentist. You may want to tell your employer….add reasons. You will need to share the information with family members if you have relatives who could also have the diagnosis and your genetic counsellor can discuss who this would be in your family. If you have a partner, you may find it helpful to talk to them and they may find it helpful to know where to get more information for themselves. You may want to talk to friends for support….

Friends and family – give them the information, explain the condition and make sure they understand so that they can be supportive. Make sure they have your emergency information on their phones and know where your emergency wallet is, have someone who you can call to advocate on your behalf when you need it and practice with them what you would like them to say and do.

Don’t do this on your own, Share share share and ask for help from family, friends, the charity, doctors, paramedics, nurses, consultants, everyone.

What can you do?

• Feel informed / prepared, know what information to share and how to explain the diagnosis to others if you need to.

• Look after yourself – find your support, look after your mental health, maintain regular gentle exercise.

• Set your goals, vEDS may change some of your plans but it shouldn’t stop them. Think about what you want to do and what you can do and make your new wish list.

• Annabelle’s challenge have lots of resources to help you. Go to the support groups and meet other people. Join the facebook group, get involved, fundraise. Share your experiences, not just for your own benefit but to help others, it really does make everything easier to deal with. Support as well as be supported.

Note: 999 UK ONLY- Please refer to the emergency phone number relevant to your country. Annabelle's Challenge cannot be held liable in the event of an emergency and the appropriate procedures not being followed and/or the response from the attending ambulance crew and/or the hospital staff.

U.S. Patients: The VEDS Movement has prepared a VEDS Emergency Preparedness Kit for people affected by vEDS living in the United States.