Lottie's Story: As a Paramedic with Addison's, My Top Tips for Turning Awareness into Action This Addison's Disease Day, it's time to turn awareness into action. Who better to show us how than Lottie, a paramedic living with Addison's herself! She shares her tried-and-tested tips for ensuring healthcare professionals know your diagnosis when it matters most. Read on, take note, and let this be your prompt to take action! My name is Lottie and I am a paramedic living with Addison's disease. I was a paramedic long before Addison's came into my life, and as I am sure you can all understand, the diagnosis has come with lots of adjustments. A big one is making sure I have everything in place in case I have an adrenal crisis, and that no matter what happens the clinicians facilitating my care are fully informed on my medical history and what that means for my treatment. In my work, I have seen every type of medical alert jewellery you can imagine, as well as numerous other methods of making a diagnosis known, such as alert cards, tattoos, clothing, lanyards, seat belt covers, bags, address tags, the list goes on! So, what actually works, which should you avoid, and which are the gold standard? This article aims to answer exactly those questions, and more, so you can make informed decisions on what would work best for you and your needs. Action 1: Medical Alert Jewellery Where else to start but with the one thing most of you probably already have, or have at least heard about: medical alert jewellery. As clinicians, we are trained to check unresponsive patients for clues which can lead us to a reason for their collapse, and one of the big things we are checking for is any wearable medical alerts. What we aren't doing though, because we simply don't have time if you're severely unwell, is checking little charm bracelets and trying to decipher calligraphy. Medical alert jewellery needs to be clear and stand out. I see so many advertised as “discreet”, which is the complete opposite of what you want in an emergency! So, what types of medical alert jewellery are considered to be ‘good' and what is ‘bad’? I personally wear two medical alerts - a plain silicone wristband with “steroid dependent” on it, which I wear 24/7, and then a more detailed magnetic wristband with more details, including my emergency contact. The ADSHG recommends for engraved identification, without other medical conditions requiring priority attention in an emergency, the suggested wording should be as below (edited to the type of adrenal insufficiency you have): “Primary/ Secondary/ Tertiary Adrenal insufficiency. Steroid-dependent.” If space, you may choose to add: "at risk of adrenal crisis." If you have Addison's disease, for example, the suggested wording is: "Primary Adrenal insufficiency (Addison's disease). Steroid-dependent". For more details visit the medical jewellery section on the ADSHG website. Silicon band options are available from the ADSHG shop. Action 2: Steroid Cards Steroid cards are invaluable tools for clinicians. They are direct and to the point, providing exact guidance on what care to provide in an emergency in the language we speak. These are little cardboard cards you can get from your healthcare team and you complete it with your information on the one side and the reverse has a step-by-step treatment guide. I recommend you buy a card sleeve (a clear sleeve you can get online) to place the card in to protect it. Then, keep your steroid card wherever suits you best - be that your wallet, with your daily medications, in your phone case, in your injection kit, etc. In fact, I have three! One I keep in my injection kit, one I keep in my purse, and the final one I keep in with my daily medications. Action 3: Medical Alert/ In Case of Emergency (ICE) on Mobile Phones I have heard so many myths about paramedics/clinicians of all types not being allowed to check medical alerts and In Case of Emergency (ICE) information on patients’ phones, and I want to be clear: this is in no way true. If I, as a paramedic, arrive at an unresponsive patient where I have no idea who they are/what their medical history is, I enter detective mode, and that includes checking their phone for medical information. Not only is this completely allowed, it is encouraged. This does not mean I use the patient’s fingerprint or face ID to unlock their phone and go scrolling through their camera roll. Frankly, even if that wasn’t beyond creepy, I have bigger fish to fry at that moment! Medical alerts, when granted permission to do so by the user, are accessible through the phone lock screen and do not allow us to access anything on the patient’s phone outside of whatever has been documented within it. I recommend you complete this and include your full name, date of birth, home address, NHS number (if known), allergies, medical history, medications, any other pertinent information, AND the date when you last updated it (this is important so the paramedics can gauge the accuracy - I check and update mine at the beginning of each month, and if nothing has changed, I simply change the date). Action 4: Medical Summary or as I call it “Hospital Passport” This can look different for everyone as it depends on the medical conditions you have. But the principle remains the same, have a piece of paper which includes everything someone needs to know about you in an emergency. The ADSHG have a Medical Summary document you can complete, as well as their Adrenal Crisis Guidelines document. For myself, due to my different health conditions, I’ve created my own and call it a Hospital Passport! It is similar to the medical alert information on my phone, with added information as needed for scenarios where people may be caring for me over a longer period. Whether you call it a Medical Summary or Hospital Passport, these are not only amazing for emergency care, but also in appointments when asked about medications etc. as you can simply hand this over to the clinician to read! On the back of the Medical Summary, there is a section where you can write other information that may be useful for someone caring for me to be aware of. Whether you do this or not, and what you include, is completely up to you! For me this includes things like the best places to get blood and cannula access, which anti-sickness and pain medications work best for me, which adhesives I do and don’t react to, etc. Action 5: Hospital Folder Should I end up in hospital, my partner knows to grab three things: my medications, my hospital bag, and my hospital folder. What is a hospital folder? It is whatever you want it to be! Mine contains 3 copies of my Medical Summary/ Hospital Passport (in case clinicians walk off with them, which often happens), a copy of my most recent hospital discharge letter, a copy of my most recent ECG (I have an abnormality on my tracing which is normal for me, so this helps clinicians quickly identify this), Steroid Medication and Emergency Injection Refusal Letters from the ADSHG website, and a printout of the ADSHG how to inject an emergency injection (that one is more for my partner). On the front, I have the ADSHG ‘steroid-dependent’ sticker, which outlines how to treat me in an emergency - you can buy these as ready-made stickers or, as I did, print one and tape it on! I’ve recently added the new ADSHG Adrenal Insufficiency Action Plan to my folder, which uses a traffic light system to explain to others how to manage adrenal insufficiency through daily medication (green), Sick Day Rules (amber) to adrenal crisis (red). Action 6: Summary Care Record (SCR) and NHS App If you haven’t already, be sure to download the NHS App and check that the information on your GP records is both up-to-date and also that ‘Addison’s disease’ or ‘adrenal insufficiency’ is clearly displayed in your list of ‘health conditions’ alongside any other pertinent diagnosed conditions you have. If anything is missing, contact your GP surgery and request the duty doctor update your Summary Care Record (SCR) appropriately. This can be a pain if your GP isn't sure what you're asking for, so the ADSHG have a template letter you can complete which explains clearly to your GP how they update your Summary Care Record. When paramedics access your medical records (with your consent or with assumed consent if you’re unresponsive), what you see in your GP Health Record is what we can see. If we cannot see you have adrenal insufficiency, we don’t know to treat you for it. In the past ambulance services would place flags on addresses which would alert the crew to a diagnosis of Addison’s or adrenal insufficiency, however, these are now being phased out, with many ambulance services already having stopped utilising them. The only way to get that information to the crew now, in absence of any of my previously suggested methods, is by having it on your Summary Care Record via your GP. So take action, complete the SCR letter and give to your GP! Action 7: Additional Extras! Some quick-fire good, bad, and okay-ish methods of alerting professionals to your diagnosis: Tattoos: Legally, these are not admissible as a medical alert. There is no way of knowing whether that tattoo is for yourself or someone you know with the condition, and also tattoos are not something medical professionals will be checking for medical alert information. Seatbelt covers: These are a brilliant way of making your condition known in an emergency! I recommend having your name and date of birth on it somewhere also, so first responders can quickly verify that it belongs to you. Patches: - I have seen some people have sew-on patches on their bags which alert people to your medical needs. If used in conjunction with other methods, these can be helpful, especially if they indicate that you are carrying an emergency injection kit in the bag they are attached to! I wouldn’t recommend them as the only form of alert, though, as they could be easily missed. Keyrings: Again, these are great additions, but I wouldn’t recommend they be used on their own, especially if it is amongst other keyrings - clinicians won’t have the time to sit there checking every keyring to see if they hold any information, nor will they think to in an emergency. I have the ADSHG keyring as an 'extra' on my keys! Magnets: These depend heavily on where you are putting said magnet. If it is next to/near where you keep your medications, then this may be helpful, but otherwise we are unlikely to notice it unless it is large and clearly labelled itself, such as the “Risk of Adrenal Crisis” magnet from the ADSHG website. Using this to hold your Medical Summary or Adrenal Insufficiency Action Plan on your fridge will make both more likely to be noticed, as letters/papers are something we go looking for to find information, and the kitchen is one of the first places we will be checking! Lanyards and ‘Dog Tags’: Same as jewellery, these are a brilliant way to alert people to your needs! So there you have it! Hopefully this helps alleviate some confusion around medical alerts and medical care, from a paramedic who's lives it personally and professionally! If you have any questions, or would like advice on a specific medical alert, visit the 'Be Prepared' section of the ADSHG website or join the Online Forum to ask questions and hear how others have turned awareness into action! Join the ADSHG today to get started! Lottie Lockwood Lottie is a paramedic for West Midlands Ambulance Service NHS Trust. She lives with Addison's disease and other health conditions. Lottie is an ADSHG volunteer for Paramedic Training in Adrenal Crisis Management. Connect with Lottie on LinkedIn Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! 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