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.

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?

Resource links:

Q2. What additional steps can people with Addison's/adrenal insufficiency take during covid-19 to stay safe?

Q3. What can carers/families do to support those with Addison’s or adrenal insufficiency and ensure they’re prepared in an emergency?

Q4. What is the most effective thing healthcare professionals/medics do to support patients and ensure they are well-equipped in an emergency?

Q5. What are the signs a person with Addison's/adrenal insufficiency may need emergency care? #AddisonsQA

Q6. Where have you seen the best outcomes for patients with adrenal insufficiency? #AddisonsQAA

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.

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