Prescription frequency
A diagnosis of adrenal insufficiency, including Addison's disease, means you need to follow Sick Day Rules and increase your steroid medication at times when you are unwell, and your body needs increased cortisol.
It is therefore crucial to build up a reserve supply of your essential steroid medicine to ensure you have enough to keep you safe through an episode of illness requiring increased dosing, or to cover a shortage of your medicine, without having to wait for a repeat prescription to arrive.
Your GP supporting you to maintain a reserve supply of steroid medication is best practice for the prevention of an acute adrenal crisis.
The Society for Endocrinology (SfE) makes it clear that healthcare professionals should:
Ensure patients have sufficient supplies to cover increased doses if they become unwell and an emergency injection of hydrocortisone 100 mg
Section 1.4.1 of the NICE Guidelines for the Identification and Management of Adrenal Insufficiency (2024) makes it clear that healthcare professionals should:
Offer additional supplies of oral glucocorticoids to cover increased dosing during periods of physiological stress (sick-day dosing).
We know from talking to our community that you all face different obstacles with your GP practice or local pharmacy when it comes to prescription management.
Our recommendations are:
Provide your GP with the SfE and NICE Guidelines information above as needed regarding best practice.
Ensure your GP understands that your steroid medication is a 'replacement' glucocorticoid and that you need to follow Sick Day Rules when you are unwell or under extreme psychological stress (ie, when your body needs more cortisol than 'usual').
When your GP asks you to attend a medication review, it is a good opportunity to chat to them about how your prescription frequency is working for you, in terms of building a reserve of glucocorticoid to allow you to follow Sick Day Rules
Submit early 'repeat prescription' request in order to build up a reserve of around 1-months worth of your usual dose of daily replacement glucocorticoid medication.
The process of how you submit your prescriptions will influence exactly what process you follow to request an 'early' or 'additional' repeat prescription.
Our 3-Month Prescription Request Letter template is for you to complete and share with your GP practice.
It explains why you should be prescribed a 3-month supply of your essential steroid medication, covering Sick Day dosing, spare for travel, GP record prompts and more.
Download a copy to print
Order a copy from our online shop
And still they refuse?
After sending this letter, if your GP still refuses, ask them to put in writing why they are going against best practice guidance. Let them know you intend to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency.
More about PALS
NB: Only increase your dose of glucocorticoid medication in conjunction with advice from your healthcare team, or when following the Sick Day Rules.
Ensuring your Medical Records are accurate
It is critically important that your medical records accurately reflect your diagnosis, that your steroid-dependency is immediately obvious to other healthcare professionals, particularly in an emergency when you may not be well enough to share your details.
Summary Care Record (SCR)
A Summary Care Record is a national database that holds electronic records of important patient information such as current medication and allergies.
It is created from GP medical records; whenever a GP record is updated, the changes are synchronised to the SCR. This allows healthcare professionals outside of your GP practice, (e.g. paramedics and ambulance crews), access to key medical information about you, to provide you with safer care.
NHS SCR information page
Use our Summary Care Record letter template (developed in collaboration with the Pituitary Foundation) to give to your GP, to request they check/update your SCR.
Download SCR letter template
Purchase a printed copy
Making the most of your appointment
GPs have precious little time outside clinics to read and learn about your condition and your appointment is likely to be limited to 7–10 minutes. So, if you have lots to discuss, you could enquire about making a double appointment. Many GP practices now encourage this for patients with complex conditions, to help the appointment schedule run on time.
As everyone knows, preparing bullet points and questions in advance means things can go more smoothly. Do take along a family member/friend if you’d like someone else to make notes, or help prompt you on important issues.
Our Medical Summary might be a useful tool for either GP or endocrine appointments, keeping all your health information in one place and focusing you on what you would like to get out of your appointment.
Download a digital version
Buy a printed version
Being Understood
One of the frustrations of having a rare condition can be feeling alone. Your GP plays an important role in coordinating aspects of your care, and it is hard if they don't understand enough about your condition to support you. Try to be patient; they are only human and have many stresses and constraints in their busy working lives. They also have lots of rare conditions to learn about, which is why we are trying to make it easier for you to support them in gaining better awareness of adrenal insufficiency and Addison's.
It can be difficult, but share how you are feeling physically and emotionally with your GP; how well you are managing and where it is a struggle - they can only help with issues they are aware of.
- Simple pleases and 'thank yous' can go a lot further than annoyance and ruffled feathers. (Take deep breaths and try to keep calm!)
- Ensure they have a copy of our 'Diagnosis & Care of a Patient with Adrenal Insufficiency' leaflet.
- Use our template letters to make requests about your prescription frequency or medical record updates.
- Point out the consequences on your health if they don't follow best practice.
- Share the education e-learning modules with them if you are not confident they have understood your condition.
- Signpost them to the Medical Professionals pages on our website.
- Ask directly to explore other options if you are still not making progress
- Consider asking to see a different GP in the practice, or asking your endocrinologist to support your needs in a letter to the GP.
- Share your frustrations and seek support from our member-only online community You will certainly not be alone and you may pick up some helpful tips!
Diagnosis & Care of a patient with Adrenal Insufficiency, including Addison's disease
