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
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:
- Medical alert wristband
- NHS Steroid Emergency Card - place it by your bed in clear sight
- Adrenal Crisis Action Plan
- Medical Summary: filled in with your health information, medication and allergies
- Steroid dependency drug-chart stickers: drug charts are digital, 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 yourself and to keep your hospital team informed, including adrenal crisis guidelines, adrenal insufficiency action plan, medical summary, notes for nurses and surgical guidelines.
Time-critical 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.
- Make sure your healthcare team are aware of your condition and the importance of the timing of your medication
- Have your medication accessible to you: Make your hospital team aware of 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. Some Trusts have medication self-administration policies that allow patients to self-medicate, so do ask about this.
Steroid Dependency Awareness
Patient-held prompts alert healthcare professionals to ensure steroid treatment is given appropriately and promptly. Always talk to staff if you’re concerned..
Summary Care Record
To ensure that all healthcare professionals, including paramedics, are aware of your steroid-dependency, make sure your Summary Care Record is up to date.
Talk to your hospital healthcare team
- Make sure they are aware of your condition and the importance of the timing of medication
- 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 - here is an 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.
If this has happened to you, read more about how to raise your concerns, and consider completing a Patient Safety Event form.
Raising concerns about your NHS care
Patient Safety Event Form
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.
Learn from the experiences of others:
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.
