Steroid Emergency Card
In August 2020, the Society for Endocrinology (SfE), Royal College of Physicians, and NHS England’s Patient Safety team released an NHS Steroid Emergency Card (SEC).
This is a patient-held prompt that you must carry with you to highlight your steroid dependency and to support early recognition and treatment of adrenal crisis.
What does the card say?
It includes basic personal details (name, date of birth, etc), with a space for why you have been prescribed a steroid. It also includes space for an emergency contact.
The back describes the emergency treatment of adrenal crisis alongside a QR code linking to SfE specialist guidance on managing adrenal crisis.
To help explain the purpose of the Steroid Emergency Card to healthcare professionals (HCPs), a National Patient Safety Alert was issued alongside the card.
The ADSHG version is a concertina card which includes space for additional personal and health details (such as prescribed medication and allergies). As such, it acts as a form of medical ID as well as giving guidance on adrenal crisis management.Further resources:
Medical ID Jewellery
As well as carrying a Steroid Emergency Card, it is highly recommended that you also wear some form of medical ID jewellery, which might feature the internationally recognised 'Staff of Aesculapius' pictured right.
It is another way of highlighting to healthcare professionals that you are steroid-dependent.
Consider the following when you choose your item:
- Wearing your medic ID jewellery at a pulse point (wrist or neck) will make it easier to locate. Smaller and more obscurely situated items might be overlooked.
- Choosing a style that is more easily identifiable and uses the Staff of Aesculapius will help healthcare professionals recognise it more easily
- The wording you use on self-designed items should be medically accurate. Also, 'Addison's disease' may be less useful if a healthcare professional is not familiar with it, so we recommend terms such as 'steroid-dependent' or 'adrenal insufficiency' and 'at risk of adrenal crisis.'
Member discount on Butler & Grace medic ID jewellery
We are thrilled to team up with Butler & Grace, who make fashionable medical jewellery with your essential medical info or a family phone number.
They are offering ADSHG members 10% of all orders.
Medic-alert Tattoos
Increasingly, people are using tattoos to show that they have adrenal insufficiency, including Addison's, and are steroid-dependent.
It is recommended that these tattoos are not used in place of a medical alert identification, but in addition to medical jewellery and your steroid alert card.
Healthcare professionals cannot rely on medical tattoos alone when treating a patient in an emergency. While a tattoo stating a medical condition may act as a helpful prompt, it is not considered an official or reliable form of medical identification.Below, some of our community share their tattoos, which have been inspired by their Addison's disease or adrenal insufficiency diagnosis.
Telling family & friends about your condition
In the weeks and months following your diagnosis, you and the people close to you will have lots of questions about your condition and what it means for your future.
Letting people know that you have Addison’s disease and adrenal insufficiency may not feel easy, so it can be helpful to think about it beforehand.
Sharing your diagnosis
- There is no right or wrong time, except what feels right or wrong for you. Consider what support you are going to need as you stabilise after the diagnosis, and who it makes sense to speak to. You can share as much or as little information as you feel comfortable with .
- The ADSHG website and resource hub, with its various leaflets and materials, can be a great place to signpost to if they want to learn the fundamentals about adrenal insufficiency.
- If you are not sure how you are going to share your 'news', plan a little in advance, and prepare for likely questions.
- You are absolutely within your rights to ask people to respect your privacy by keeping your information to themselves.
- To keep you safe, in case of an adrenal crisis, it is often best to have a few close friends, family/colleagues whom you spend time with, be aware of your diagnosis and the risk of a crisis. They can learn the signs and symptoms of adrenal crisis, as well as where you keep your emergency injection kit.
- Everyone is likely to respond to you differently. Whilst you might wish for just the right mix of sympathy, matter-of-factness, support and positivity. Instead, you might get anything from weeping to "It could be worse", seasoned with unwanted advice and ill-informed opinion – possibly including questioning the diagnosis or leaving the room because they’re overwhelmed. Give time to digest what you have shared. You can help them to meet your needs by sharing what works for you, e.g., would you like a hug, or silent listening. You're more likely to 'get' if you 'ask'.
- Telling children under 18: Let them know it is not their fault, not contagious and that sometimes the condition might require urgent action.
Advice & Support
Managing your emotional wellbeing
Having Addison's disease or adrenal insufficiency to manage on top of life’s normal ups and downs can, in itself, be stressful. We have resources that may support you with the emotional side of adjusting to your diagnosis and sharing it with others.
Connect to others via our online community platform (members-only)
