There is a lot to think about when you have a hospital visit planned, and emergency visits are, by their very nature, stressful already.
Getting good care in hospital involves working with healthcare professionals to help them understand what you need. To ensure that your care as an inpatient or outpatient runs smoothly, there are some key things that you and your healthcare team must be aware of.
Being Prepared
1. Make sure that your medical records are correct before you have a hospital visit, by checking with your GP that your Summary Care Record is up-to-date.
Use our letter template to help explain to your GP practice what they need to check so that you can feel confident that other healthcare professionals will have access to the right information.
2. You may want to have a pre-prepared 'grab and go' bag somewhere at home, with the key things you need for an unexpected hospital visit. You can purchase all of these from our online shop.
- Medical alert wristband
- NHS Steroid Emergency Card - place it by your bed in clear sight - it links to the National Patient Safety Alert.
- Adrenal Crisis Action Plan
- Medical Summary: filled in with your health information, medication and allergies, it helps keep all your information in one place. Give a photocopy to your nurse.
- Steroid dependency drug-chart stickers: drug charts are digital these days, however, these stickers are good to put on your hospital folder, or anywhere staff will see them!
- Hospital folder: We have put together a folder of key leaflets for you and to keep your hospital team informed, including adrenal crisis guidelines, the adrenal insufficiency action plan, medical summary, notes for nurses and surgical guidelines.
Hospital folder
We have put together a folder of key leaflets for yourself and to keep your hospital team informed, including adrenal crisis guidelines, adrenal insufficiency action plan, medical summary, notes for nurses and surgical guidelines.
Making sure your team know how to manage your adrenal insufficiency
This involves;
- Making sure they know you are steroid-dependent using the alerts and resources above
- Making sure they understand how to care for a patient with adrenal insufficiency by providing them with information and resources
Talk to your hospital healthcare team
- Make sure they are aware of your condition and the importance of the timing of medication.
Your replacement steroid medication is time-critical. Delayed or missed medication may lead to low-cortisol symptoms and the risk of having an adrenal crisis.
Have your medication accessible to you and talk to your hospital team about the importance of allowing you to retain your medication, in line with the Royal College of Emergency Medicine's advice on managing time-critical medication in hospital. Medication dispensing times on wards may not align well with your usual medication management schedule, so it is important that you can self-medicate when you are well enough.
- Ensure they understand Sick Day Rules and the requirement to adjust your medication when you are unwell.
- Ensure they are aware of the symptoms and emergency treatment of adrenal crisis.
- If you feel that staff are not confident in the management of adrenal insufficiency, request an Endocrinology consult.
- Ask if they have a steroid alert system on their electronic hospital files: view this example from Royal Bournemouth Hospital.
- Make them aware of any concerns you have about going into hospital; they may be able to advise and reassure you.
Staying overnight
See our quick checklist below of what you might need.
- Medication – adrenal insufficiency medication and anything else you take. Include a copy of your recent prescription/ medication list, so you can easily show healthcare professionals your current medication regime.
- Emergency Hydrocortisone Kit
- A hospital folder with your key information in and/or ADSHG leaflets, such as the Surgical Guidelines, hospital drug chart stickers and Notes for Nurses.
- Important numbers – take your phone and a charger.
- A change of clothes and essential washbag items
- Things to pass the time: like a magazine or a book.
If possible, have someone with you when you arrive at hospital who can support you in telling hospital staff about your condition and your needs (to advocate for you).
When things did not go as planned
Unfortunately, we regularly hear about situations where, for one reason or another, hospital care has not been of the standard it should be. Patients with rare conditions, including Addison's and adrenal insufficiency, do experience situations where a lack of awareness about a condition among staff, or a lack of familiarity with a hospital protocol, can lead to mistakes being made.
Martha's Rule
Martha’s Rule is a patient safety initiative in England, to support the early detection of deterioration by ensuring the concerns of patients, families, carers and staff are listened to and acted upon.
Hospitals implementing Martha’s Rule will have clear signage or leaflets explaining how to request a review from a different clinical team. This might involve:
- Calling a dedicated phone number
- Speaking to a Patient Liaison or Safety Officer
- Using a ward-based escalation protocol
You do not need medical knowledge—just a genuine concern.
If you have had a negative experience, read about how you can raise your concerns, and consider completing an anonymous Patient Safety Event form to report your experience to the ADSHG.
Unfortunately, we are not able to get involved in individual situations, but we will review submitted forms quarterly to look for patterns of where our focus is most needed.
You can find more information below:
Shared personal experiences
It can be comforting and helpful to learn from others who have been in a similar position to yourself. Browse the personal stories on our blog, or explore the articles relating to hospital, below.
Join our online community
Join the ADSHG to get access to our member-only online community. Get practical tips and support from people who have experience in managing their Addison's disease and adrenal insufficiency.
