About Addison's Disease Newly diagnosed? Your GP practice Build a positive working relationship with your GP or healthcare professional to manage your condition effectively. Adrenal insufficiency is rare, and Addison’s disease (primary adrenal insufficiency) is very rare, so the GPs at your practice are likely to see only very few (if any) people with these conditions – even in a big, shared practice. This is also true of other forms of steroid dependence, so your GPs’ understanding of adrenal issues and replacement steroids may be limited, even more so if you also have multiple health conditions. Therefore you may have to give your GP a helping hand in understanding your medical needs and providing you with the most effective care. Here you'll find expert, clinically approved guidance to help your GP give you the care you need. Help your GP to understand adrenal insufficiency: leaflets & e-modules Prescription Frequency Accurate Medical Records to show you are steroid-dependent Being Prepared: making the most of your appointment Getting along with your GP Being Understood Help your GP to understand adrenal insufficiency You may be the first patient with adrenal insufficiency or Addison's disease that your GP has supported, so it is key that they have access to a resource specifically aimed at them as General Practitioners. 1. Booklet for your GP Updated in October 2025, we have a clinically approved publication written for your GP healthcare team, available for you to download as a digital version or to purchase from our online shop. Our comprehensive 21-page colour, A5 booklet, the 'Diagnosis & Care of a Patient with Adrenal Insufficiency' has been designed for you to give to your GP to ensure they have up-to-date clinical information to support them in managing your care. It includes; An introduction to Addison's disease and other types of adrenal insufficiency. GP Role in supporting a patient with adrenal insufficiency Emergency Management of Adrenal Crisis Diagnosis and Screening incl Patient Support Medication Management Preventing Admission through Patient Education (incl Sick Day Rules) Follow up and Care 2. E-Learning Modules for your GP The ADSHG are proud to have co-authored two CPD education modules for your GP. Highlighting the expert recommendations in these modules can improve your care. Let your GP know about these courses by sharing our poster, to help them stay up to date and to ensure they can support you in the best way. Royal College of General Practioners (RCGP) Learning Module Adrenal Insufficiency with a focus on Addison's disease This eModule discusses the causes of adrenal insufficiency, how to recognise and diagnose the condition in primary care, and management. It also covers adrenal crisis, how to recognise this condition, and the emergency treatment which should be delivered before hospital transfer. The eModule can be accessed from the RCGP website. Please share https://elearning.rcgp.org.uk/addisonsdisease with your GP or click the button below. RCGP eModule British Medical Journal (BMJ) Learning Module Medical emergencies in primary care: Addisonian (adrenal) crisis During 2024/5 we worked with the BMJ team on the content for this module, to ensure they are aware of Addison’s disease and adrenal insufficiency, the risk of adrenal crisis, and how to manage it. This course offers a practical guide for GPs, providing them with the knowledge and skills required for the recognition and emergency treatment of Addisonian (adrenal) crisis. Please share https://new-learning.bmj.com/course/30000297 with your GP or click the button below. BMJ Learning Advertise the GP Education E-Modules This poster is an A4 printout to let your GP know about the CPD education modules available on Addison's and adrenal insufficiency. Share it with your GP to help improve awareness and understanding of Addison's disease and adrenal insufficiency. GPs: If you are a GP yourself, why not print out and display as a poster in your staff room to let others know about these courses? Download the poster Prescription Frequency A diagnosis of adrenal insufficiency, including Addison's disease, means that 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 if there is 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) make clear that healthcare professionals should: The NICE Guidelines for the Identification and Management of Adrenal Insufficiency make clear that healthcare professionals should: Prescription Management Practicalities Suppose you are on a prescription frequency of 28 days / 1 month, and have not been issued with a supplementary prescription to provide you with 'spare'. In this case, it can be challenging to build up the necessary reserves of your steroid medication to allow you to follow Sick Day Rules when you need to. 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: Ask your GP to be on a repeat prescription frequency of 3 months, providing 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 Build up a reserve of around 2 weeks worth of your usual dose of daily replacement glucocorticoid medication by submitting a request for your repeat prescription earlier than you need it. Depending on how you submit your prescriptions will influence exactly what process you follow to request an 'early' or 'additional' repeat prescription. We are currently working on a template letter that you can use to send to your GP, with a copy also going to your endocrinologist, to help you to explain your needs, and how they can best support you. Watch this space! NB: Only increase your dose of glucocorticoid medication in conjunction with advice from your healthcare team, or when following the Sick Day Rules. What to do if your GP refuses to increase your prescription We understand that there may be procedural, technical or practical obstacles to your GP or pharmacy agreeing to change your prescription frequency. We know it can be hard work to address these, but we urge you to persevere! Due to Addison's and adrenal insufficiency being a rare disease, medical professionals don't always have the information they need to make certain decisions. With over 7,000 rare diseases, it isn't possible for your GP to be an expert on your condition. Providing them with the information linked above and working with them means they have the medical evidence they need to understand the significance of your request and to seek a solution to any obstacles. Write or Email: If your GP does not wish to extend your prescription to provide the above cover, please put your request in writing, including the information on this page which confirms this is standard practice for your safety. Ask them to read through and then politely request again that you are provided with 3-month provision of your essential steroid medication. Next steps including PALs: After sending this email/letter, if your GP still refuses - ask them to answer why they are going against the expert and best practice guidance of the Addison's Clinical Advisory Panel (CAP), the SfE and the NICE Guidelines. This is so you have their response in writing and helps provide clarity. Let your GP know you intend to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency. Learn more about PALs Raising Awareness at your GP Surgery Download our posters and print for your GP to help raise awareness of Addison's disease and adrenal insufficiency. From a poster for their staff room on the RCGP CPD module, to NHS Steroid Emergency card posters for the GP waiting room. Help make a difference with this simple step! Share our Posters Ensuring your Medical Records are accurate It is critically important that your medical records accurately reflect your diagnosis, and that information about your steroid-dependent condition is immediately available for other healthcare professionals to clearly see, particularly in an emergency where someone may be too unwell to tell healthcare professionals about their condition. Summary Care Record 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 SCR. This enables healthcare professionals outside of your GP practice, such as paramedics and ambulance crews, to have better medical information about you to provide you with safer care. 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). 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. For further information, visit the Visit the NHS information page on Summary Care Records for patients Other information that is helpul to have scanned into your notes for reference: ADSHG crisis guidelines ADSHG surgical guidelines Being Prepared: Make 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. You are entitled to take along a family member or friend if you’d like someone else to make notes, or help prompt you on important issues. You might find our Medical Summary a useful tool to help you prepare for your appointment Getting along with your GP You don't need to be the best of friends, but you’re likely to get along better if you bear in mind that your GP’s aim is to help people. However GPs are only human and they have many stresses and constraints in their busy working lives. So, 'please's and 'thank yous' can go a long way and even if they seem to misunderstand you or refuse your requests, becoming angry or annoyed can ruffle feathers and get in the way of the outcome you want. So deep breaths, keep calm and carry on explaining! If you feel yourself getting emotional, take a moment to re-focus, then speak slowly and quietly. You are an expert patient working to receive the management your condition requires. Helpful Tips If your GP makes a potentially unhelpful suggestion, for example, 'you will have to ask the endocrine clinic for injection materials' or 'your prescription can only be renewed monthly', here is a useful formula for response. Thank them for their response – or something similarly polite, rather than a protest! Consequences – remind them of your concerns about the potential consequences and how your health could be put at risk. Have a copy of our GP leaflet with you to direct them to more information, but below are some brief example answers you could give. 'Endocrine appointments are delayed by many months, but here I have supplied the information a GP needs to supply the injection materials I need to prevent acute adrenal crisis.' or 'By only providing prescriptions monthly, this gives no extra replacement steroid should I become unwell, putting me at risk of adrenal crisis and leaving me unable to self-manage my health.' Ask for help – how could they, as your GP, help you to avoid the worst case risks that might arise? Other options – ask directly: 'please can we explore other options?' If you get a defensive or negative reaction, then politely leave the subject. Be prepared to raise it again at your next appointment, or ask to see a different GP in the practice, who may have a more informed or open outlook. You could consider asking your endocrinology department to write a letter on your behalf. And don’t hesitate to share your frustrations in the ADSHG forum. You will find you are not alone, and others are likely to have some helpful tips in how to win over a resistant GP. Being Understood The aim of treatment for Addison’s and adrenal insufficiency is to enable you to feel well and to lead a full life. That’s you, in your life, not some standardised human being! This means that, blood tests notwithstanding, only you know the effect that your replacement endocrine medications are having on your wellbeing or otherwise. Let your GP know, as factually as you can, how well you are managing, and where it is a struggle. Remember, they can only help with the issues they are aware of. 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
This is also true of other forms of steroid dependence, so your GPs’ understanding of adrenal issues and replacement steroids may be limited, even more so if you also have multiple health conditions. Therefore you may have to give your GP a helping hand in understanding your medical needs and providing you with the most effective care. Here you'll find expert, clinically approved guidance to help your GP give you the care you need. Help your GP to understand adrenal insufficiency: leaflets & e-modules Prescription Frequency Accurate Medical Records to show you are steroid-dependent Being Prepared: making the most of your appointment Getting along with your GP Being Understood Help your GP to understand adrenal insufficiency You may be the first patient with adrenal insufficiency or Addison's disease that your GP has supported, so it is key that they have access to a resource specifically aimed at them as General Practitioners. 1. Booklet for your GP Updated in October 2025, we have a clinically approved publication written for your GP healthcare team, available for you to download as a digital version or to purchase from our online shop. Our comprehensive 21-page colour, A5 booklet, the 'Diagnosis & Care of a Patient with Adrenal Insufficiency' has been designed for you to give to your GP to ensure they have up-to-date clinical information to support them in managing your care. It includes; An introduction to Addison's disease and other types of adrenal insufficiency. GP Role in supporting a patient with adrenal insufficiency Emergency Management of Adrenal Crisis Diagnosis and Screening incl Patient Support Medication Management Preventing Admission through Patient Education (incl Sick Day Rules) Follow up and Care 2. E-Learning Modules for your GP The ADSHG are proud to have co-authored two CPD education modules for your GP. Highlighting the expert recommendations in these modules can improve your care. Let your GP know about these courses by sharing our poster, to help them stay up to date and to ensure they can support you in the best way. Royal College of General Practioners (RCGP) Learning Module Adrenal Insufficiency with a focus on Addison's disease This eModule discusses the causes of adrenal insufficiency, how to recognise and diagnose the condition in primary care, and management. It also covers adrenal crisis, how to recognise this condition, and the emergency treatment which should be delivered before hospital transfer. The eModule can be accessed from the RCGP website. Please share https://elearning.rcgp.org.uk/addisonsdisease with your GP or click the button below. RCGP eModule British Medical Journal (BMJ) Learning Module Medical emergencies in primary care: Addisonian (adrenal) crisis During 2024/5 we worked with the BMJ team on the content for this module, to ensure they are aware of Addison’s disease and adrenal insufficiency, the risk of adrenal crisis, and how to manage it. This course offers a practical guide for GPs, providing them with the knowledge and skills required for the recognition and emergency treatment of Addisonian (adrenal) crisis. Please share https://new-learning.bmj.com/course/30000297 with your GP or click the button below. BMJ Learning Advertise the GP Education E-Modules This poster is an A4 printout to let your GP know about the CPD education modules available on Addison's and adrenal insufficiency. Share it with your GP to help improve awareness and understanding of Addison's disease and adrenal insufficiency. GPs: If you are a GP yourself, why not print out and display as a poster in your staff room to let others know about these courses? Download the poster Prescription Frequency A diagnosis of adrenal insufficiency, including Addison's disease, means that 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 if there is 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) make clear that healthcare professionals should: The NICE Guidelines for the Identification and Management of Adrenal Insufficiency make clear that healthcare professionals should: Prescription Management Practicalities Suppose you are on a prescription frequency of 28 days / 1 month, and have not been issued with a supplementary prescription to provide you with 'spare'. In this case, it can be challenging to build up the necessary reserves of your steroid medication to allow you to follow Sick Day Rules when you need to. 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: Ask your GP to be on a repeat prescription frequency of 3 months, providing 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 Build up a reserve of around 2 weeks worth of your usual dose of daily replacement glucocorticoid medication by submitting a request for your repeat prescription earlier than you need it. Depending on how you submit your prescriptions will influence exactly what process you follow to request an 'early' or 'additional' repeat prescription. We are currently working on a template letter that you can use to send to your GP, with a copy also going to your endocrinologist, to help you to explain your needs, and how they can best support you. Watch this space! NB: Only increase your dose of glucocorticoid medication in conjunction with advice from your healthcare team, or when following the Sick Day Rules. What to do if your GP refuses to increase your prescription We understand that there may be procedural, technical or practical obstacles to your GP or pharmacy agreeing to change your prescription frequency. We know it can be hard work to address these, but we urge you to persevere! Due to Addison's and adrenal insufficiency being a rare disease, medical professionals don't always have the information they need to make certain decisions. With over 7,000 rare diseases, it isn't possible for your GP to be an expert on your condition. Providing them with the information linked above and working with them means they have the medical evidence they need to understand the significance of your request and to seek a solution to any obstacles. Write or Email: If your GP does not wish to extend your prescription to provide the above cover, please put your request in writing, including the information on this page which confirms this is standard practice for your safety. Ask them to read through and then politely request again that you are provided with 3-month provision of your essential steroid medication. Next steps including PALs: After sending this email/letter, if your GP still refuses - ask them to answer why they are going against the expert and best practice guidance of the Addison's Clinical Advisory Panel (CAP), the SfE and the NICE Guidelines. This is so you have their response in writing and helps provide clarity. Let your GP know you intend to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency. Learn more about PALs Raising Awareness at your GP Surgery Download our posters and print for your GP to help raise awareness of Addison's disease and adrenal insufficiency. From a poster for their staff room on the RCGP CPD module, to NHS Steroid Emergency card posters for the GP waiting room. Help make a difference with this simple step! Share our Posters Ensuring your Medical Records are accurate It is critically important that your medical records accurately reflect your diagnosis, and that information about your steroid-dependent condition is immediately available for other healthcare professionals to clearly see, particularly in an emergency where someone may be too unwell to tell healthcare professionals about their condition. Summary Care Record 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 SCR. This enables healthcare professionals outside of your GP practice, such as paramedics and ambulance crews, to have better medical information about you to provide you with safer care. 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). 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. For further information, visit the Visit the NHS information page on Summary Care Records for patients Other information that is helpul to have scanned into your notes for reference: ADSHG crisis guidelines ADSHG surgical guidelines Being Prepared: Make 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. You are entitled to take along a family member or friend if you’d like someone else to make notes, or help prompt you on important issues. You might find our Medical Summary a useful tool to help you prepare for your appointment Getting along with your GP You don't need to be the best of friends, but you’re likely to get along better if you bear in mind that your GP’s aim is to help people. However GPs are only human and they have many stresses and constraints in their busy working lives. So, 'please's and 'thank yous' can go a long way and even if they seem to misunderstand you or refuse your requests, becoming angry or annoyed can ruffle feathers and get in the way of the outcome you want. So deep breaths, keep calm and carry on explaining! If you feel yourself getting emotional, take a moment to re-focus, then speak slowly and quietly. You are an expert patient working to receive the management your condition requires. Helpful Tips If your GP makes a potentially unhelpful suggestion, for example, 'you will have to ask the endocrine clinic for injection materials' or 'your prescription can only be renewed monthly', here is a useful formula for response. Thank them for their response – or something similarly polite, rather than a protest! Consequences – remind them of your concerns about the potential consequences and how your health could be put at risk. Have a copy of our GP leaflet with you to direct them to more information, but below are some brief example answers you could give. 'Endocrine appointments are delayed by many months, but here I have supplied the information a GP needs to supply the injection materials I need to prevent acute adrenal crisis.' or 'By only providing prescriptions monthly, this gives no extra replacement steroid should I become unwell, putting me at risk of adrenal crisis and leaving me unable to self-manage my health.' Ask for help – how could they, as your GP, help you to avoid the worst case risks that might arise? Other options – ask directly: 'please can we explore other options?' If you get a defensive or negative reaction, then politely leave the subject. Be prepared to raise it again at your next appointment, or ask to see a different GP in the practice, who may have a more informed or open outlook. You could consider asking your endocrinology department to write a letter on your behalf. And don’t hesitate to share your frustrations in the ADSHG forum. You will find you are not alone, and others are likely to have some helpful tips in how to win over a resistant GP. Being Understood The aim of treatment for Addison’s and adrenal insufficiency is to enable you to feel well and to lead a full life. That’s you, in your life, not some standardised human being! This means that, blood tests notwithstanding, only you know the effect that your replacement endocrine medications are having on your wellbeing or otherwise. Let your GP know, as factually as you can, how well you are managing, and where it is a struggle. Remember, they can only help with the issues they are aware of. 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.