Helping us to identify patterns and focus on where improvements are most needed.
Patient Safety Event form
We know that, unfortunately, things do not always go to plan with healthcare for people with adrenal insufficiency, including Addison's disease. This can be for a number of different reasons, including lack of awareness, lack of protocols being in place or followed, or lack of training.
Unfortunately, we are regularly contacted by members of the adrenal insufficiency community who share an experience they have had where they felt, or were at actual risk of harm.
How can the ADSHG support you after you experience a patient safety event?
Very regretfully, the ADSHG does not have the resources to get involved in individual patient safety situations because we are a small team trying to balance working towards all the goals of our community.
However, there is some general support we can offer:
Making an individual complaint:
We would direct you to our webpage on raising concerns about your NHS care. This explains how to make a complaint about the care you are currently receiving, or have received in the past. It also shares the details on Martha's rule, which supports you in raising immediate concerns at the time you are receiving care. This page will help you to understand the process, stay empowered and access support.
Why Complaints Matter: People with rare and invisible conditions like adrenal insufficiency are sometimes misunderstood or overlooked in healthcare settings. This can be distressing and even dangerous. Speaking up helps improve care - not just for you, but for others too.
Following an A&E experience or an emergency admission, we always recommend contacting your own endocrinologist, particularly if the care/treatment has not been to standard, in the hope they can raise it with their A&E colleagues.
You can read more about making a complaint by clicking on the link below;
Raising concerns about your NHS Care
Repeated issues and patterns
We are aware that there may be patterns and learnings to be taken from collecting information on experiences that have been below standard, and looking for similarities or 'themes'. This is a way that we can better understand what is happening to patients and focus on the areas that need support to change and improve.
For this reason, we have created a Patient Safety Event form to allow people to anonymously share their experience with us.
What is the Patient Safety Event form?
It is an anonymous online form, created by the ADSHG, that asks a series of questions about the healthcare experience you had that made you feel at risk or where you were at risk.
Each form is to record a single patient safety event. If you have experience with more than one event that you would like to share, then each event would need to be recorded on a separate form.
We have compiled and tested our Patient Safety Event Form with volunteers who have experienced a patient safety event.
Complete the Patient Safety Event form
Who can fill it in?
We are only able to collect Patient Safety Event information for people who:
- are more than 18 years old
- are living in the UK
- give permission for the ADSHG to hold the information they share for the purpose of raising awareness of the patient safety events experienced by UK patients with adrenal insufficiency
Also where;
- the experience relates to an NHS healthcare service
- the patient safety event occurred within the last 24 months (since April 2024)
- you may complete this form on behalf of someone else, with their express permission.
Is it worth it?
We know that it can be difficult, emotional and time-consuming to revisit the experience you had. Completing this form is entirely optional. If you are limited on energy or time but still want to share your experience, you can just complete the 'required' questions,and leave the rest.
If you are dealing with emotional trauma relating to your healthcare experience, our Rareminds Webinar recording might be helpful, but you could also go to your GP to ask about Talking Therapies or read the NHS webpage on Talking Therapies, to look into whether EMDR therapy may be suitable for you. EMDR is explained on the NHS page under the header ‘Types of talking therapy’.
We have created this form because every recorded event helps us to fight to improve patient safety for people with adrenal insufficiency and Addison's disease.
Complete the Patient Safety Event form