For a long time, our members have been telling us how hard it is to manage adrenal insufficiency, including Addison’s disease, when you’re only given a one-month supply of essential steroid medication. It’s not just inconvenient—it can feel risky and exhausting. 

Below, we share the difficulties, our survey findings, and we introduce resources to help you work with your GP and healthcare team to get 3-month prescriptions

Our Survey Findings

You shared your challenges with us:
  • Having to contact your GP or pharmacy every time you need extra medication for Sick Day Rules 
  • Struggling to get spare medication for travel 
  • Constantly managing repeat prescriptions 
  • Anxiety about supply shortages and having no reserves 
  • Feeling your condition isn’t understood, or your concerns heard 

These aren’t small issues. They affect daily life, peace of mind, and patient safety. 

In June, we teamed up with Professor John Wass (Consultant Endocrinologist, University of Oxford), Dr Antonia Brooke (Royal Devon University Healthcare NHS Foundation Trust), and The Pituitary Foundation to dig deeper. We launched an anonymous survey among UK adults with adrenal insufficiency who use NHS services. 

At the ADSHG we had 325 responses and here is what we learned: 

 

Receive less than 3-month supply of glucocorticoid medication

 

 

Receive only a 1-month supply

 

 

Receive less than 3-months supply of fludrocortisone

 

Behind these numbers are real frustrations:

I was initially prescribed 28 days and when I complained, I was given 2 months. When I asked for 3 months and said it was recommended by ADSHG, the GP pulled a face!

What happens when GPs are asked to increase prescription length?

40% of our responders had asked their GP for a longer prescription—but many were refused.

Reasons ranged from “policy” and “insurance” to concerns about “hoarding.” Some respondents weren’t given any reason at all. 

Survey responses also mentioned practical hurdles; delays of up to a week for prescription fulfilment, difficulty ordering early, and GPs acknowledging they need to learn more about adrenal insufficiency. 

Resources to help you get a 3-month prescription

Turning Voices into Action

The survey feedback isn’t just sitting in a report—it’s driving real change: 

Raising Awareness – We are presenting these findings (jointly with results from The Pituitary Foundation) at the British Endocrine Society Conference in March 2026, reaching up to 1,500 healthcare professionals. 

Policy Engagement – We are working with the UK Clinical Director for Prescribing to align GP and pharmacy practices with a proposed UK-wide shift to 84-day prescriptions. 

Tools to help – We’ve created some resources for people with adrenal insufficiency, including Addison's disease, to use to help them - see below.

Adrenal Insufficiency Action Plan

Leaflet endorsed by the Society for Endocrinology, summarising effective self-management of adrenal insufficiency, including Addison's disease on a 'normal day', a 'Sick Day', and in the case of adrenal crisis. For everyone, from patients to carers to healthcare professionals.

View and download Action Plan

Buy a printed copy of the Action Plan

Prescription length letter template

Letter template endorsed by the Society for Endocrinology, explaining to your GP why you need to have a 3-month prescription of your essential steroid medication, and signposting them to further information.View and download 3-month prescription letter template

Buy a printed copy of the letter template

Why This Matters: Actions for Healthcare Professionals

These captured experiences and insights are more than just stories - they reveal a problem with the current system and make it clear how significantly these issues affect patient quality of life and patient safety.

If you are a healthcare professional supporting a patient with adrenal insufficiency please:

  • Support them to receive 3-month repeat prescriptions so they can follow Sick Day Rules and prevent adrenal crisis. If medications are dispensed in a dosette box, it is essential to provide a separate supply of steroids to allow for increasing the dose when following Sick Day Rules.
  • Take the time to understand their rare condition so you can support them in effectively self-managing it: familiarise yourself with the Adrenal Insufficiency Action Plan and work through it with your patient.
  • Signpost your patient to the ADSHG for further information, support events, and injection training opportunities.
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