Video advice for adrenal insufficiency patients

Kerrie Grounds, Lead Endocrine Specialist Nurse (ESN) at the Royal Liverpool University Hospital (RLUH) and her team have produced an educational video for patients with adrenal insufficiency. Here she explains what inspired them to create this invaluable and informative patient resource.

Kerrie Grounds adrenal crisis video image

I work with a team of fabulous, dedicated ESN’s named: Amanda Hamilton, Karen Jones and Michelle Lewin. We have created a short video for all our patients with adrenal insufficiency to access via the internet. This video provides education regarding steroid replacement therapy; sick day rules and demonstrates how to prepare and administer the hydrocortisone emergency injection should this be required in the event of an adrenal crisis. We feel this information is vital for improving quality of life for all patients with adrenal insufficiency and urge you to share the video.

Why did we create the video?

Prior to the COVID-19 pandemic, we commenced group education sessions for all our patients with adrenal insufficiency to deliver education regarding their steroid replacement, sick day rules and hydrocortisone emergency injection training. We ensured that at the end of each session everybody received their emergency injection prescription/ancillaries/travel letter/ sharps bin and patient information support pack, including surgical guidelines /steroid treatment card/medic alert identification etc. These sessions have been well received and the feedback has been very positive. It was delivered in a relaxed environment and I think the tea/coffee and biscuits also helped!

Then COVID-19 arrived! A very difficult and scary time for everyone involved and our main aim was to ensure all our adrenal insufficiency patients had access to an emergency injection. We have over 300 patients at present under our ESN team that we review. As we had to suspend our group education sessions, we created a letter for our patients to take to their own GP’s to prescribe the emergency hydrocortisone injection. Primary care played a vital role in ensuring our adrenal insufficiency patients all had access to this injection. We also sent our patient information packs, which we used to provide in our education sessions, to our patients alongside ancillaries (needles and syringes) to enable them to administer their injections, which also covered guidance from the Society for Endocrinology COVID-19 guidelines. We provided our ESN contact details and advised them to access the ADSHG Professor John Wass video regarding their emergency injection training. We tried our very best to ensure our patients received as much information as possible to protect them in the event of an adrenal crisis. We had an administration clerk, Ann Marie Brookes, whom played a vital role in assisting us with this. I will be forever grateful to my team for working together at such a difficult time.

We can honestly say that although Professor John Wass’ emergency injection video was very informative and inspired us, we felt that our patients would receive the video better if they saw familiar faces….who better to deliver this than their own ESN’s. We also wanted to cover steroid replacement during illness. Due to lockdown we were unable to provide face-to-face education sessions and we felt that creating a video was not only the best way, but the safest way forward. Our departmental manager gained funding for us to record the video, we created the script and practised it on our own and then filmed the video, all in one day. Please remember we are nurses and not actors and it was rather nerve racking for us all!

Why am I so passionate about this?

My ESN role is not just an occupation for me. I am passionate about endocrinology and have learned so much in the 8 years I have worked with the Endocrinology team, here at the RLUH. I work with a fabulous team of Endocrine/Diabetes Consultants at the RLUH and as mentioned above Endocrine Specialist Nurses. It still fascinates me every day and there is always room to learn within this role.

However I also have Addison’s disease. I was diagnosed at the age of 18 and have lived with this condition for 22 years now. I have always been a positive person and my glass is always half full. When diagnosed I weighed about six stone and had been unwell at home for three months, fading away. I could not stand up or eat anything, I was nauseous, vomiting, had headaches, the fatigue was so debilitating and it was frustrating for me and family as we did not know what was wrong. However, a positive side to that was I had a fabulous tan!. When I was eventually admitted to hospital and diagnosed with Addison’s disease I remember being so thankful to all the nurses and doctors who had helped me. This was when I realised I wanted to be able to give something back, so I trained to be an adult registered nurse and have never looked back. I can honestly say that when the ESN job post was advertised I thought I knew quite a bit about my Addison’s disease but I knew nothing! This job has literally saved my life. This is why I will always be thankful to my Endocrinology Consultants and fellow ESN’s here at the RLUH for the education and training they provided me, to be able to not only ensure I have a perfectly normal quality of life but to be able to provide specialist advice and empathy for my patients.

I know only too well the symptoms of low cortisol and adrenal crisis and I would say the fatigue is the worst symptom that we have to learn to live with. However, I am a mother to two beautiful boys and a full-time ESN. I have perfectly normal quality of life and feel blessed every day that I am able to manage my Addison’s disease.

Here is our Emergency Injection Steroid Replacement Video on the RLUH website or watch it on YouTube. Please share this widely and help to keep adrenal insufficiency patients safe and informed.

Learn more about Society for Endocrinology guidance on managing adrenal crisis, including a downloadable NHS Emergency Steroid Card.

Learn more about the adrenal glands and related diseases.