Letters to support you - Steroid Refusal & GP Summary Care Record Working with the ADSHG Clinical Advisory Panel we have created three letters to support and provide you with practical resources when advocating for yourself in a healthcare setting. These three new letters include: Summary Care Record Letter for GPs Emergency Hydrocortisone Injection Refusal Letter Glucocorticoid Medication Refusal Letter Summary Care Record Letter for GPs In collaboration with The Pituitary Foundation, we have created a templated letter for you to give or send to your GP, which requests that they check and update, where necessary, your Summary Care Record (SCR). Why might I need this? Following review in 2024, the AACE (Association of Ambulance Chief Executives) recommended that 'Red Flags' should no longer be used by ambulance trusts as a way of highlighting to an emergency call handler on a 999 call, that there was a person at that address is steroid dependent and at risk of adrenal crisis. Instead, the focus is on a record called your Summary Care Record, which ambulance staff, along with other healthcare professionals, can access. Your Summary Care Record shows the health conditions you have and the treatment you require.For this reason, it's now important to make sure that your Summary Care Record is up-to-date and contains details of both your steroid dependency and what medication you require. Please read our full article about the end of 'Red Flagging' and to understand more about your Summary Care Record. Red Flagging & Summary Care Record Update What does the letter request? The letter lists the checks your GP can easily make on their system to ensure your Summary Card Record is up-to-date. We have worked with GPs and The Pituitary Foundation to co-author this letter for you to complete and then give to your GP at your next appointment, or hand it into reception. This helps ensure that your GP understands what they need to do to ensure your Summary Care Record is correct. Download for free Order from our online shop More support for your GP care Steroid Medication and Emergency Injection Refusal Letters We wish it wasn't necessary to provide our members with a letter for them to present to medical staff in the event that they are refused their steroid medication (whilst an inpatient) or an emergency injection when they are at risk of adrenal crisis. However, feedback from our members tells us that it is. As such, we have created, and had approved by our ADSHG Clinical Advisory Panel, two 'refusal' letters that you can use to try and explain the vital importance of you receiving time-critical steroid medication, or a time-critical hydrocortisone emergency injection. The aim of these letters is not to aggravate healthcare professionals who are there to help support you, but rather to emphasise the critical nature of the interventions required, and to signpost them to the NICE guidelines on the identification and management of adrenal insufficiency. These letters are now available in member packs for new members, can be downloaded and printed for free and are also available from our online shop. Please use the links below. Emergency Injection Refusal Download for free Order from our online shop Glucocorticoid Medication Refusal Download for free Order from our online shop Adrenal Crisis Emergency care Emergency hydrocortisone injection We aim to provide educational and supportive resources to help you feel empowered, support your patient self-advocacy, and receive the medical care you need. Dealing with a rare, chronic health condition can be exhausting and overwhelming, especially when you have to explain the care you require to healthcare professionals who may not have come across Addison's or adrenal insufficiency before. You are not alone in these feelings - please explore our resources below to support you. Stress of a long-term condition How to reduce stress and resources to help you. Online Forum Speak with others who have Addison's and adrenal insufficiency. Join our charity Receive our Welcome Pack and year-round expert, trusted support. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. Manage Cookie Preferences