International Addison's Day Twitter Chat - Being Prepared For Emergencies - 20/05/2020 On International Addison's Day we met for a Twitter Chat on the theme of 'Being Prepared - Getting Ready For Emergencies'. Here are some of the highlights. We were delighted to have an international expert panel join us, consisting of consultant endocrinologists, specialist endocrine nurses and ADSHG members, ready to answer our #AddisonsQA questions!The chat attracted tweets from Brazil, Australia, America, Canada and the UK to name just a few! Having published the findings from our survey about preparedness for emergencies, we knew that a large number of people with Addison's or Adrenal Insufficiency (who are therefore steroid-dependant) were without the basics of extra medication and an injection kit in case of adrenal crisis. So our volunteer Sophie gathered the most frequently asked questions from our members for our Twitter Chat about readiness for adrenal crisis and illness. Below we’ve included the questions we asked our expert panel and some of the great advice and tips sent in by medics and people living with Addison’s. The key pieces of advice we took away were: Symptoms: It is important to find out the symptoms of an adrenal crisis and to tell family, friends and colleagues the ones which particularly apply to you. NHS Steroid-Card: print a copy and keep with you at all times. Refusal of injection kits: While people with Addison's or adrenal insufficiency may want an emergency hydrocortisone injection kit, many are being refused one because they "live near to a hospital". This does not account for speed of which receiving the injection is vital to avoid precipitating an acute adrenal crisis. Not having a kit for daily travel, exercise, holidays and also accounting for A&E and ambulance wait times could be life-threatening. It is a dangerous assumption a steroid-dependant person would receive the hydrocortisone injection without delay, if they do not have a kit on their person, home or place of work. Every minute counts. Visit our injection kit webpage for more resources on the next steps if you have been refused a kit. Injection training: Some hospitals run emergency injection training. It's worth asking your Endocrine Nurse about attending or starting sessions like this. Many also use our online videos, narrated by Prof John Wass, to teach their loved ones and colleagues. Emotional Impact of COVID-19: Many people with Adrenal Insufficiency have experienced more symptoms as a result of the emotional impacts of COVID-19. We are very grateful to all who gave their Friday afternoon to join us for a great tweet chat and for raising awareness of this rare endocrine condition. Thank you! Follow us on Twitter at @AddisonsUK to hear about our next twitter chat. Questions? Please get in touch on [email protected] Q1. What steps can people with Addison's take to ensure they are prepared for an emergency? A1. One thing I intend on doing soon is preparing an emergency bag that can be left for just in case style scenarios. Otherwise, I always carry my injection kit, even to the local shop; all friends and family know how to use & I always have med alert bracelet on 😊 #addisonsQA https://t.co/k8OmNH5XIV — Sam ✨ (@Miss_Sunder1and) May 29, 2020 A1, ensure that their emergency kit is complete and in date. Keep a note of when it expires. Have the new steroid alert card with them at all times Register with their local ambulance service so that they are red flagged in case of a crisis #addisonsQA — Alex TLC (@alexTLCsupport) May 29, 2020 A1. Take advantage of the system!! Register your #Addisons with your local ambulance trust, get steroid education refresher sessions when needed from your friendly local endocrine team, join ADSHG #AddisonsQA https://t.co/LWXyKbhATS — Anna Mitchell (@Anna_L_Mitchell) May 29, 2020 Resource links: How to register ("red flagged") with your local ambulance. Print your own copy of the NHS Steroid Card Tips on what to keep in your emergency injection kit Q2. What additional steps can people with Addison's/adrenal insufficiency take during covid-19 to stay safe? A2: As Sofia says an understandable fear but you MUST go to hospital if required. Jennifer recently shared her positive experience of attending hospital during #COVID19 on our website https://t.co/5QbTZLDc3C#AddisonsQA https://t.co/aCjWjz9XVd — Addison's Disease (@AddisonsUK) May 29, 2020 Consider.... NEVER remove alert bracelet/tag no good in bedside drawer if ambulance called when you’re unwell #AddisonQA — Julie Hetherington (@skimlattewoman) May 29, 2020 #AddisonsQA A2 I have been surprised to find that the emotional toil has had an impact ... do not know why I was surprised really https://t.co/jL4xmRmcVY — ⚫️Clare Fenwick (@csf0961) May 29, 2020 Q3. What can carers/families do to support those with Addison’s or adrenal insufficiency and ensure they’re prepared in an emergency? A3. I find there’s nothing more reassuring sometimes than people being honest and just asking for a refresher on how to use injection kit and it gives me opportunity to refresh my memory too. 💖 #addisonsqa https://t.co/7fuBb5lnSk — Sam ✨ (@Miss_Sunder1and) May 29, 2020 A3. Train them up on injecting (probably better using an orange rather than your leg on this one!), educate them on emergency procedure, where kit is kept, etc. Add them as emergency contact on phones. #AddisonsQA — AMEND (@AmendInfo) May 29, 2020 #AddisonsQA A3 Learn the triggers (if known) of their adrenal crisis. You may end up being their advocate if unwell. Be insistent to HCP and show NHS steroid card if you feel they don’t understand. Talk to their local endocrinology team if needed https://t.co/UwUti6MGAb — Lisa shepherd (@lisashepherdcl1) May 29, 2020 Q3: Again, letting everyone know the possible triggers - with children - discuss care plans with school or nursery - wear a medicalert bracelet. Encourage children to recognise the signs that they are unwell and not to be afraid to speak to a grown up — Kate Pickup (@sausmash) May 29, 2020 Q4. What is the most effective thing healthcare professionals/medics do to support patients and ensure they are well-equipped in an emergency? A4 #AddisonsQA https://t.co/q2PyguCk2D — AMEND (@AmendInfo) May 29, 2020 #AddIsonsQA A4 listen to person or relative with Adrenal Insufficiency, ensure they prescribe sufficient steroids for sick days, provide emergency hydrocortisone injection and training https://t.co/vhT1i10GsP — Lisa shepherd (@lisashepherdcl1) May 29, 2020 Q5. What are the signs a person with Addison's/adrenal insufficiency may need emergency care? #AddisonsQA A5. This varies from person to person. I'm going to swerve the answer here & leave it to the experts. What I would say is become an expert in how you feel & recognise exactly what constitutes an impending Adrenal Crisis FOR YOU. Then describe it to others in your life #AddisonsQA https://t.co/chhSIk2p4F — Carl Hall (@esc4p33) May 29, 2020 A5. Dizziness when they sit up. Not answering questions clearly ie“Not making sense”... Vomiting a 2nd time —> E&A #AddisonsQA — Julie Hetherington (@skimlattewoman) May 29, 2020 A5. Key signs/symptoms of #adrenalcrisis: weakness, feeling terrible, headache, thirst, vomiting, dizziness, back/abdominal pain, confusion, drowsiness, loss of consciousness - vital to intervene before the latter 3 if possible #AddisonsQA https://t.co/88IMJnAe0j — Anna Mitchell (@Anna_L_Mitchell) May 29, 2020 A5 We think this graphic from @Research2note is a great visual on this! #AddisonsQA https://t.co/niS6ZRxaZw — The Pituitary Foundation (@Pituitary_org) May 29, 2020 Q6. Where have you seen the best outcomes for patients with adrenal insufficiency? #AddisonsQAA Great Ormond Street for children and University College London Hospital have great doctors and excellent information #addisonsQA — Alex TLC (@alexTLCsupport) May 29, 2020 A6 Can only comment on my own experiences but endocrine consultants and nurses have been fantastic in Glasgow - thank you to all the consultants and also Donna, Karen and other nurses. You've literally been a lifeline xx #AddisonsQA — Vicki HM Dale (@vickihmdale) May 29, 2020 A6. Team work (between the patient and the medics) and mutual respect are key #AddisonsQA https://t.co/gseMpDpAY7 — Anna Mitchell (@Anna_L_Mitchell) May 29, 2020 A big thank you to our expert panel: Lisa Shepherd, UK, Endocrinology Advanced Nurse Practitioner, Heart of England NHS Foundation Trust. Birmingham. Julie Hetherington, Australia, A founding member of the Federation of International Nurses in Endocrinology and Karen Harrison, UK, Support Services Manager, Alex TLC Sofia Llahana, UK, Consultant Nurse & Past Chair of the European Society for Endocrinology Kaz, UK, Adult Support Group Co-ordinator at CAH Jo, UK CEO at AMEND Simona, Brazil, Morbodi Addisons (Addison's Disease Support Group in Brazil) Anna Mitchell, UK, Consultant Endocrinologist at the Newcastle upon Tyne NHS Hospitals Foundation Trust Kate Davies, Senior Lecturer in Children's Nursing and Non Medical Prescribing at London South Bank University And to all our wonderful members who fed in their experiences and encouraged new friends to share their thoughts.