Novel Coronavirus (COVID-19) - 24/02/2021 Reviewed 24/02/2022: This page is currently up-to-date, based on the most recent guidance available and is the best advice we have for people with Addison's and Adrenal Insufficiency at this time. Please also visit the NHS website, NHS Wales website, NHS Scotland website or HSE in Ireland for the latest health related information for people living in the UK and ROI. Our trustee medics and Clinical Advisory Panel alongside Society for Endocrinology, will continue to review our guideance. We hope you find it useful and it answers some of your questions. Medics - read COVID-19 Adrenal Crisis Information for Endocrinologists Unwell with COVID-19? Larger than usual steroid doses are required. Read our Sick Day Rules for advice on appropriate dosing. Watch our video on COVID-19 dosing. On this page: here are our eight COVID-19 (coronavirus) precautions for people who have Addison's Disease or Adrenal Insufficiency. 1. Protecting Yourself & Vaccines 2. Preparing for Emergencies 3. Managing Your Medication 4. Keeping Informed 5. Managing Employment and Finances 6. Getting About Safely 7. Recovering from COVID-19 8. Children and Schools 1. Protecting Yourself & Vaccines Risks of catching COVID-19 still remain. With the possibility of new varients emerging, the advice remains that caution is still needed. If you're looking for more information on vaccines, including Booster jabs, please visit our vaccine page. Coronavirus Vaccines and Adrenal Insufficiency In the UK and ROI varying levels of guidance are in place to keep the general public safe now that we are living with Covid-19. England Coronavirus Guidance Northern Ireland Coronavirus Guidance Wales Coronavirus Guidance Scotland Coronavirus Guidance ROI Coronavirus Guidance People who take steroids for Addison’s Disease and adrenal insufficiency are not at significant increased risk of contracting coronavirus but may become more severely unwell, and possibly have an adrenal crisis if they develop coronavirus. Whilst there is some research suggesting patients with Addison’s disease have a small increased risk of infections, this is not to the same degree as patients who are immunocompromised. People with Addison’s disease and adrenal insufficiency fall into the vulnerable group and vaccine priority group 6 as a minimum. According to the Summary Advice Statement released by Society for Endocrinology, and in line with government guidelines, you should be particularly stringent in following the local coronavirus guidance. Please read the sections on this webpage for more detailed information on each point. But here are our top tips for being prepared in case you become unwell with coronavirus: Ensure you have sufficient supplies to cover increased doses if you become unwell and have an emergency injection of hydrocortisone 100 mg. If you need to provide your health care professional with more information about dosages and current medical guidance - please visit the Society for Endocrinology COVID-19 website. Get confident - practise how to use your injection kit with our tutorial videos, teach those who live with you and print off our 'how-to' leaflets for your injection kit. These leaflets are included in the kits sold on our online shop if you don't have access to a printer. Take control - get prepared and wear your medic alert band at all times as well as carrying a steroid card and emergency injection kit. Take time to read our Sick Day Rules so you know how to change your doses when ill. Keep yourself up-to-date with our COVID page and the government guidance for where you live. Ask your healthcare team if unsure about your own level of risk given any health conditions you are currently managing. Coronavirus Testing - getting tested is the only way to know if you have the virus. You can order free tests online from the NHS website here. If you test positive and are required to, self-isolate, it helps stop the virus spreading. In the UK, home lateral flow tests are available (see the NHS Covid-19 Testing Guide) in addition to those available at test centres. Visit our sanctuary of support page to help if you feel lost, concerned, puzzled or poorly. Vaccinations The most important way people living with Addison's disease and adrenal insufficiency can lower their risk of becoming seriously ill from coronavirus is to avoid catching the virus in the first place. A vaccine is the most effective way to prevent infection and that’s why we strongly encourage you to get the vaccine when you’re offered it. The independent Joint Committee on Vaccination and Immunisations (JCVI) released guidance about who should get a vaccine, and when for the first round of COVID-19 vaccinations. Adrenal insufficiency is specifically mentioned in this guidance, in the JCVI COVID-19 Green Book Chapter 14a that provides COVID-19 vaccination information for public health professionals and is classed as band 6 priority. Everyone aged 12 and over, and some children aged 5 to 11 who live in England, can book an appointment online to receive vaccines. You can also book using by calling 119 free of charge, anytime between 7am and 11pm seven days a week. Book your COVID-19 vaccine appointment In the UK the Janssen, Moderna, Oxford AstraZenica and Pfizer vaccines are included in the vaccine delivery programme. Arrangements in Ireland may differ as they are governed separately. Read our guide to Vaccines and Adrenal Insufficiency which explains more about COVID-19, priority groups as well as Flu, Pneumonia and other vaccines. Explore the personal stories members of our community who have kindly been sharing, in our magazine, news alerts and on our blog, their personal experiences of receiving the COVID-19 vaccinations, booster jabs and third dose vaccines: First and second COVID-19 vaccine dose personal experiences Booster jab and third dose COVID-19 vaccine dose personal experience Shielding advice Your local government, NHS (or HSE in ROI) directly may advise the pausing or resuming of shielding in response to developments in the pandemic. Managing your mental wellbeing It’s important to look after your mental health right now, whether you’ve had coronavirus or not. Think about ways to keep your stress levels down, what you can control and how being prepared can be a great help. Talk to someone if you are feeling stressed or anxious. Over on our blog we discuss the different feelings our community are experiencing as restrictions ease. You can read our advice on coping with psychological stress. If you are an ADSHG member, we have a useful coronavirus thread on our online forum where you can talk about how you feel. Others can then support you, as other members share information and experiences. For further support in looking after your mental here, here are some useful link to organisations that can help you do that: Every Mind Matters Clear Your Head (Scotland) Rethink Mind Mental Health Foundation The World Health Organisation has also published advice here about managing your mental wellbeing during the time of COVID-19. Support for living well If you meet certain criteria you can access support from volunteer responders. They may be able to help with things like helping you with shopping, getting prescriptions or just checking in to see how you are doing. England NHS volunteer responder support online or call 0808 196 3646. Scotland additional support webpage or call 0800 111 4000. Wales support page for vulnerable people phone numbers are listed for each region on the support page. ROI Community Support helpline or call 0800 915 4604. Northern Ireland support for vulnerable people You may be caring for a person in an at-risk group. If you are, take extra care to protect yourself and the person you care for from coronavirus. 2. Preparing for Emergencies Get your Emergency kit and Emergency Letter ready Make sure you have an Emergency Injection Kit containing hydrocortisone vials available from your GP or Endocrinologist, syringes, injection instructions, and plastic vial snaps. Make sure it is up to date, that you have the instructions and practice a self-injection using our videos. Make sure you have a completed Emergency Letter and it is up to date. Keep your NHS Steroid Card handy if you live in England Keep a copy of both the NHS Steroid Emergency Card and ADSHG charity Adrenal Crisis Emergency wallet card, filled in with your details, in your wallet or purse. Learn more about steroid emergency cards Visit our 'Be Prepared - Resources to help you' page for more support Prepare in case you need to be admitted to hospital Put together a hospital folder with your key information in and/or ADSHG leaflets, NHS steroid emergency card, spare medication and a list of your current medication. This can then be picked up and taken there easily by you, your carer or patient advocate. If living in the UK, register with your local ambulance trust. Make sure you can stay hydrated: Make sure you have plenty of non-alcoholic drinks, salty snacks and rehydration fluids (available in most chemists) or salts available in your home. Learn about Self Isolation (different to shielding) in case you are asked to isolate: It's advisable to self isolate if you have COVID-19 symptoms or your are found to be a contact of someone with confirmed COVID-19. The following links explain what self isolation is, when to isolate and where to look for advice if isolating impacts your employment or finances. Familiarise yourself with the the local advice on self isolation so that you are prepared in case you are told to self-isolate: NHS England advice on self-isolation HSE self-isolation and limited social interaction NHS Scotland advice on self-isolation Northern Ireland government advice on self isolation Welsh Government's guidance on self isolation Get familiar with how to get medical help in an emergency: If you're based in the UK: If you need to use the NHS 111 service please use the NHS 111 website in the first instance so that the service can handle more urgent cases over the phone. If you need to contact NHS 111 or call 999 in an emergency, be sure to mention 'steroid-dependent' and 'adrenal insufficiency' when explaining your health status. Or in ROI: the HSE contact details are: Callsave: 1850 24 1850, Phone: 041 6850300 or Tweet: @HSELive 3. Managing your medication Keep taking your tablets as normally prescribed unless you are ill. Steroids taken for adrenal insufficiency are replacement doses and increasing the dose during illness is to try and mimic your body's natural physiological response. In the correctly tailored dosages, they should not suppress your immune system or make you more susceptible to infection. Make sure you have a good supply of medication that cover you, in the event, you have to self isolate and fall ill enough to increase your dosing as per our Sick Day Rules. Please read our Sick Day Rules before increasing your dosing and make sure you have extra medication. If your UK or ROI based GP or Endocrinologist does not wish to provide additional prescriptions to provide the above cover, please print and provide them with the below documents as a guide and politely ask again: The advice from the Society for Endocrinologists for people with adrenal insufficiency. The ADSHG Caring For the Addison's Patient leaflet The Pituitary Foundations's Letter to GPs - Digital Template Please note: The ADSHG cannot become involved in individual disputes, but our resources can be downloaded to raise awareness amongst medics. Over on our blog we've taken a look at the use of high dose corticosteroids - including hydrocortisone and dexamethasone - in the treatment of COVID-19: Behind the news: Hydrocortisone as a treatment for COVID-19 4. Keeping Informed Make sure you have useful ADSHG publications printed, filled in and stored in an easy to find location. Talk to your family about the support and/or treatment you need - make a plan. You could use our Personal Emergency Plan to think everything through together. Our Sick Day Rules are an excellent set of principles to follow if you become ill. Print them and share them with those who are likely to be looking after you if you become ill. The Government, NHS and HSE are providing regular updates so follow them online or keep an eye on the media for their latest updates. UK Department of Health and Social Care On Facebook On Twitter UK NHS On Facebook On Twitter ROI HSEOn Facebook On Twitter Tailored information for people living in Wales, Scotland and Northern Ireland can also be found at: • Public Health Wales • Health Protection Scotland • Public Health Agency (NI) Tailored information for British Sign Language users Read the advice from the Society for Endocrinologists regarding adrenal crisis. Please familiarise yourself with the NHS advice on self-isolation in case you are asked to self-isolate. Follow the ADSHG on Twitter, Facebook or if you are a member all our updates will also feature on our forum. We'll also include advice on our ADSHG website. Misinformation can be troubling and misleading. Please review the WHO's Mythbusters to verify the things you are hearing, reading or sharing. 5. Managing employment and finances Depending on restrictions in place in the UK or ROI you may receive recommendations to work from home if you're able to. For some, working from home is not possible. You may be concerned about returning to face-to-face working. If you are employed, talk to your employer about their plans and your needs. As the Citizen's Advice Bureau advises: "Talk to your employer if you think there’s more they could do to keep you safe. Try to be constructive and explain what you need to happen so that you’ll feel safe when working." Read the your local governments advice for working during the time of COVID-19 and advice if you're worried about working: UK and Welsh Government Worker Support page Scottish Government advice for working safely ROI Citizen's Advice Bureau's Returning to Work Safely page Northern Ireland's Government advice for workers You can find the latest advice from the Citizens Advice bureau or in ROI from Citizen's Information, if you are concerned about going to work, sick pay or any benefits you receive. If you are unable to work from home, your workplace is required to meet any COVID secure obligations that apply as set out by your local government. You might see measures in place like working times are staggered so people aren’t arriving and leaving at the same time; it's possible to stay socially distant from colleagues in a well ventilated room (keep windows and doors open as much as possible); you can wash your hands or use hand sanitiser frequently or wear a face covering. In the UK, use GOV.UK’s coronavirus employee risk assessment tool to find out what the risks are for attending your workplace in England and the measures your employer should put in place to reduce those risks. Outside the UK, follow guidance for Scotland, Wales, Ireland and Northern Ireland. Please note: The ADSHG cannot become involved in individual disputes, but our resources can be downloaded to raise awareness amongst employers, those in HR or occupational health or healthcare professionals involved in supporting you. Sick Note. If you get coronavirus symptoms and can’t work, then you shouldn’t need a sick note for the first seven days, but most employers will want to see one after that. In the UK, if you have been told to self-isolate and you need a note for your employer, the NHS can give you a digital isolation note. You can access this service through the NHS 111 website which will be sent via email, or can be sent directly to your employer. If you’re part of the NHS and public sector, occupational health (OH) services are involved in assessing the risk of people with health conditions going to work. If you’re working in these areas, this information 'Keeping our Workforce Safe’ could be useful. Unable to Work. If you can’t work and are on a low income or you are self-employed and have been negatively affected by coronavirus, you'll find more information about benefits, allowances, grants and other schemes available from the Citizens Advice bureau or in the ROI from Citizen's Information. 6. Getting out and about safely Follow the local guidance for outdoor activities and exercise. Dwithin those guidelines is down to your attitude to risk. It might be helpful to think about how much you’d benefit from going somewhere and how much you could potentially be exposed to coronavirus. Always follow the latest guidance from your local government and healthcare providers. Generally, outdoor activities should be lower risk than indoor activities as long as the latest government guidance is followed. Travel. If you are planning to travel, please check the travel advice from your local government about the countries you'll be travelling to and from. UK Government Travel Advice Welsh Government Travel Advice Scottish Government Travel Advice ROI Travel Advice We also have advice on our website about managing your Addison's when travelling. If you have been travelling abroad, and you think you may have been exposed to Coronavirus, the most up-to-date advice on what to do can be found on the NHS, HSE ,Public Health Wales, Health Protection Scotland, Public Health Agency (NI) or UK Government websites. Going to appointments or into hospital. If you have a medical appointment, check the current advice at the medical centre in question and discuss any concerns with them when considering if you will attend or not. It is important to contact the NHS if you have any healthcare concerns. It's important not to put off talking to your GP or endocrinologist. Many GP surgeries now have a website or app that allows you to get help without visiting a surgery so do ask the receptionist for details. You might find it useful to talk to friends, family or a health care professional about your individual situation, taking into account your Addison's disease or adrenal insufficiency. You can also check out our blog for our hospital and COVID-19 posts: Q&A with Dr Helen Simpson (Consultant Endocrinologist) and Professor John Wass about going into hospital during COVID-19 - read read about the Q&A.. ADSHG member Jennifer shares her experience of having emergency surgery during COVID-19 - read about it in our blog. 7. Long COVID and recovering from COVID-19 If you have experienced COVID-19 yourself, make an appointment with your GP to discuss how you are recovering since your were ill. It seems to be that recovery from COVID-19 can sometimes be a long haul so you might benefit from being referred to a COVID-19 follow up clinic if you are having persistent problems. It might well be worth your seeing your endocrinologist for an up to date assessment. Visit the dedicated NHS website for Long Covid As it is still very early days for the medics generally to know how people are going to recover, there will be no 'one size fits all' approach, so contact your healthcare team, who know your circumstances, and find out the best strategy for you. Long Covid Support Charity Long Covid Support was formed by a group of people struggling to recover from Covid-19, who found each other online and have been facilitating international peer support and campaigning in the UK for recognition, rehabilitation and research into treatments since May 2020. Long Covid Support is a charitable company, registered in the UK, but with affiliations in over 100 countries and territories. A group of 50 volunteers, all themselves with lived experience of Long Covid, are involved in our core work streams. 8. Children and schools. Schools should be following the latest government guidance to help your child when they are at school and encouraging regular hand washing, to prevent the virus from spreading between children and your home. For the latest information on what parents and carers need to know about schools and education during the coronavirus pandemic visit your local government website. GOV.UK pages about school and education Scottish government pages about school and education Welsh government pages about school and education Northern Irish government pages about school and education If you are worried about the safety of your child returning to school if they have Addison’s or adrenal insufficiency, speak to the school and to your child’s endocrine team about your concerns. There are also some key things you can do to before your child returns to school: Medication - Resupply the school with an in-date hydrocortisone emergency injection kit and medications as prescribed and following your child’s Individual Healthcare Plan (IHP). An Individual Health Care Plan - Individual Health Care Plans (IHPs), are called different things depending on the nation you live in. But these plans are used to make sure your child’s Addison’s or adrenal insufficiency is managed properly during school time. Make sure your child’s IHP is up-to-date and includes a copy of the latest letter from the medical professional coordinating your child’s care. A sample IHP template is included in our booklet "When a student has Addison's: a guide for schools and parents." Be Prepared - If your child is old enough, you can support them in making sure they know how to use their emergency injection kit. Read more about kits on our website and watch our Emergency Injectionvideos on YouTube about how to correctly use an emergency injection kit. For more information on the COVID-19 advice for schools for the four nations, please follow the links below: Schools guidance in England Schools guidance in Northern Ireland Schools guidance in Scotland Schools guidance in Wales Schools guidance in Ireland Are you a member of our charity? 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. Join the ADSHG Say hello! Follow us on Twitter, Facebook, Instagram, LinkedIn and YouTube.