About Addison's Disease Newly diagnosed? Working with your GP practice We discuss how to build a positive working relationship with your GP or healthcare professional to manage your condition effectively. Addison’s disease and adrenal insufficiency are very rare, so the GPs at your practice are likely to see only very few (if any) people with Addison’s and adrenal insufficiency – even in a big, shared practice. This is also true of other forms of steroid-dependence and so your GPs’ understanding of adrenal issues and replacement steroids may only be limited and theoretical. Add to that the fact you may well have one or more other conditions, and it becomes apparent that you may have to give your GP a helping hand in understanding your medical needs. 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 appointments schedule run to 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. We have two templates to support on our appointment page. Making the most of your appointments You are the expert on you 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. They can only help with the issues they are aware of. Expert Clinical Practice for Addison’s and adrenal insufficiency Do give your GP copies of all relevant information from the ADSHG website, especially 'Caring for the patient with Addison's: information for GPs'. It can help if you highlight on the leaflet what you are keen for them to do on your behalf, such as writing repeat prescription lengths of 3+ months for essential replacement hormone tablets, and including injectable hydrocortisone supplies on your repeat. Be prepared and ready to explain the reasons for this, and don’t assume they will be familiar with what they need to do for you. You may be the first adrenal patient they have ever written a prescription for, and they may lack confidence. Highlighting the expert recommendations in our leaflets, written by the Addison’s Clinical Advisory Panel, can help to make your relationship a more positive one. Let your GP know about the free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” which they can undertake as part of their ongoing CPD. This module was created with ADSHG and the Addison's Clinical Advisory Panel (CAP). 3 months reserve supply of essential steroid medicine Due to the Sick Day Rules it is necessary to always have 3 months reserve supply of your essential steroid medicine. This is to ensure you have enough to keep you safe through an episode of illness which requires increased dosing, or to cover if there is a shortage of your medicine. During COVID, this has become even more important to prevent an acute adrenal crisis. If you need to discuss with your GP adjusting your repeat prescription length, you may find it helpful to give them the following information: The ADSHG GP Care leaflet to emphasise that this is the recommended clinical practice for essential replacement steroid therapy. The 'Treatment' section of the NHS website for Addison's, where this is the advice given under the 'Sick Day Rules' header. The free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” The advice from the Society for Endocrinologists for people with adrenal insufficiency 3 months provision of essential steroid medication is standard practice and is the advice given by the ADSHG Clinical Advisory Panel, Society for Endocrinology, and on the NHS page for Addison's disease. Here is some guidance on next steps, if your GP refuses to increase your prescription: 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 months provision of your essential steroid medication. 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 adjust your prescription. Next steps inc PALs: After sending this email/letter, if your GP still refuses - ask them to answer why they are going against the expert advice and guidance of the Addison's Clinical Advisory Panel (CAP). This is so you have their response in writing and helps provide clarity. Let your GP know it is your intention to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency. Learn more about PALs Hug your GP? No, don’t! But you’re likely to get along better if you bear in mind that your GP’s aim is to help people – that’s why they became a doctor. However, GPs are only human and they have many stresses and constraints in their very busy working lives. So pleases and thank yous can oil the wheels of the consultation and, even if they seem to misunderstand you or refuse your requests, becoming tearful or upset 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 upset, take a moment to re-focus, then speak slowly and quietly. Some key words 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 spluttering or weeping protest! Consequences – remind them of your concerns about the potential consequences and how your health could be put at risk. 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, negative reaction, then politely leave the subject. Be prepared to raise it again at your next appointment. You may be allocated a different partner in the practice, with 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. ADSHG publications Ask your GP to ensure the following have been scanned into your Notes and are highlighted in your Summary Care Notes. Caring for the patient with Addison’s: information for GPs (versions available for Ireland and the UK) ADSHG crisis guidelines ADSHG surgical guidelines Let your GP know about the free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” All our PDFs can be downloaded for free from our Publications page. 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 Twitter, Facebook, Instagram, LinkedIn and YouTube. Manage Cookie Preferences
Addison’s disease and adrenal insufficiency are very rare, so the GPs at your practice are likely to see only very few (if any) people with Addison’s and adrenal insufficiency – even in a big, shared practice. This is also true of other forms of steroid-dependence and so your GPs’ understanding of adrenal issues and replacement steroids may only be limited and theoretical. Add to that the fact you may well have one or more other conditions, and it becomes apparent that you may have to give your GP a helping hand in understanding your medical needs. 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 appointments schedule run to 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. We have two templates to support on our appointment page. Making the most of your appointments You are the expert on you 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. They can only help with the issues they are aware of. Expert Clinical Practice for Addison’s and adrenal insufficiency Do give your GP copies of all relevant information from the ADSHG website, especially 'Caring for the patient with Addison's: information for GPs'. It can help if you highlight on the leaflet what you are keen for them to do on your behalf, such as writing repeat prescription lengths of 3+ months for essential replacement hormone tablets, and including injectable hydrocortisone supplies on your repeat. Be prepared and ready to explain the reasons for this, and don’t assume they will be familiar with what they need to do for you. You may be the first adrenal patient they have ever written a prescription for, and they may lack confidence. Highlighting the expert recommendations in our leaflets, written by the Addison’s Clinical Advisory Panel, can help to make your relationship a more positive one. Let your GP know about the free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” which they can undertake as part of their ongoing CPD. This module was created with ADSHG and the Addison's Clinical Advisory Panel (CAP). 3 months reserve supply of essential steroid medicine Due to the Sick Day Rules it is necessary to always have 3 months reserve supply of your essential steroid medicine. This is to ensure you have enough to keep you safe through an episode of illness which requires increased dosing, or to cover if there is a shortage of your medicine. During COVID, this has become even more important to prevent an acute adrenal crisis. If you need to discuss with your GP adjusting your repeat prescription length, you may find it helpful to give them the following information: The ADSHG GP Care leaflet to emphasise that this is the recommended clinical practice for essential replacement steroid therapy. The 'Treatment' section of the NHS website for Addison's, where this is the advice given under the 'Sick Day Rules' header. The free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” The advice from the Society for Endocrinologists for people with adrenal insufficiency 3 months provision of essential steroid medication is standard practice and is the advice given by the ADSHG Clinical Advisory Panel, Society for Endocrinology, and on the NHS page for Addison's disease. Here is some guidance on next steps, if your GP refuses to increase your prescription: 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 months provision of your essential steroid medication. 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 adjust your prescription. Next steps inc PALs: After sending this email/letter, if your GP still refuses - ask them to answer why they are going against the expert advice and guidance of the Addison's Clinical Advisory Panel (CAP). This is so you have their response in writing and helps provide clarity. Let your GP know it is your intention to include their answer when writing formally to PALs about their unsafe management of your Addison’s or adrenal insufficiency. Learn more about PALs Hug your GP? No, don’t! But you’re likely to get along better if you bear in mind that your GP’s aim is to help people – that’s why they became a doctor. However, GPs are only human and they have many stresses and constraints in their very busy working lives. So pleases and thank yous can oil the wheels of the consultation and, even if they seem to misunderstand you or refuse your requests, becoming tearful or upset 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 upset, take a moment to re-focus, then speak slowly and quietly. Some key words 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 spluttering or weeping protest! Consequences – remind them of your concerns about the potential consequences and how your health could be put at risk. 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, negative reaction, then politely leave the subject. Be prepared to raise it again at your next appointment. You may be allocated a different partner in the practice, with 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. ADSHG publications Ask your GP to ensure the following have been scanned into your Notes and are highlighted in your Summary Care Notes. Caring for the patient with Addison’s: information for GPs (versions available for Ireland and the UK) ADSHG crisis guidelines ADSHG surgical guidelines Let your GP know about the free RCGP eModule "Adrenal insufficiency with a focus on Addison's disease” All our PDFs can be downloaded for free from our Publications page. 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 Twitter, Facebook, Instagram, LinkedIn and YouTube.