16 September 2020

When COVID-19 hit, the Endocrine Specialist Nurses at the Royal Liverpool University Hospital were no longer able to host their steroid education sessions for their patients with adrenal insufficiency. Determined that their patients should still receive this invaluable and informative patient resource, from the familiar faces of their Endocrine nurses, Kerrie, Amanda, Karen and Michelle produced their "Emergency hydrocortisone injections movie".

Lead Endocrine Specialist Nurse, Kerrie Grounds, tells us more and explains her own personal connection to Addison's.  

Hi, my name is Kerrie Grounds and I am the Lead Endocrine Specialist Nurse (ESN) here at the Royal Liverpool University Hospital (RLUH). 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 would like to share this video with you for you to cascade to your members of the ADSHG as we feel this information is vital in improving quality of life for all patients with adrenal insufficiency. 

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 attend 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, very positive. It was delivered in a relaxed environment and I think the tea/coffee and biscuits also helped. 

Then Covid 19 arrived! This has been a very difficult and scary time for everyone involved and our main aim was to ensure all our adrenal insufficient 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 insufficient 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 via post which also covered guidance from the Society for Endocrinology Covid 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 that 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 the 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 be able to record the video, we created the script and practiced it on our own and then filmed the video in 1 day. Please remember we are nurses and not actors and it was rather nerve racking for us all. 

   

So why am I so passionate about this?  

Well 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 fascinates me still every day and there is always room to learn within this role.  

Being a nurse with Addison's

However I also have Addison’s disease. I was diagnosed at the age of 18 and I 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 6 stone and had been unwell at home for 3 months, fading away. I could not stand up, 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 with, to be able to not only ensure I live a perfectly normally quality of life but to be able to provide specialist advice and empathy for my patients also.   

I know only too well the symptoms of low cortisol and adrenal crisis and I can honestly say the fatigue is the worst symptom that we have to learn to live with. However I am a mother to 2 beautiful boys and a full time ESN and I have never looked back. I live a perfectly normal quality of life and feel blessed every day that I am able to manage my Addison’s disease.  

Watch now!

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.

The video has also been added to the charity's YouTube playlist "ADSHG picks from around the web".

Thank you Kerrie for speaking with us and sharing your story and this fantastic resource.

Update Feb 2022: Kerrie was awarded 'Top Nursing Practice Abstract' under the Clinical Endocrinology Trust prizes at the Society for Endocrinology BES 2021 conference, for her work on this video. A huge achievement and fantastic recognition of her hard work. You can read her abstract titled “Assessing the effectiveness of the endocrine specialist nurses (ESN) hydrocortisone education video created during covid-19 pandemic” here. Congratulations Kerrie!

ADSHG resources to help you

• Adrenal crisis guidance. Learn about the warning signs of low cortisol and what to do if you have an adrenal crisis.
• Day to day life. Make sure you always carry your key Addison's and adrenal insufficiency items when you're out and about. A pill pocket, medic-alert bracelet, NHS steroid card and emergency hydrocortisone injection kit are vital items to always have on you. 
• Be prepared - always carry your kit. Carry an emergency hydrocortisone injection kit with you at all times. You may not need it - but if you do, it will save you life. We recommend having multiple kits, for example in your bag and car to keep on you as you carry out your daily activities. Learn more about hydrocortisone injection kits here. 
• Practise makes perfect. Have you reminded those you live with, or spend a lot of time with, where you keep your injection kits? Why not carry out an at home refresher course, practising on an orange so you are all confident in using your kit. Watch our videos on YouTube for more 'How To' videos and download our step-by-step leaflets for your kit.
• #ShareYourKit. Use the hashtag #ShareYourKit to show how you store and carry your kits, to help encourage us all to keep our kits with us at all times and normalise this potentially scary situation. Search the hashtag on social media, read about previous examples in our members magazine or visit our blog post.
• Support. Log on to the ADSHG online forum or follow us on Instagram, Twitter or Facebook, so you can get advice when you need it! 

	If you would like join the conversation with our ADSHG community and their experiences of life with less restrictions, visit the Coronavirus section of our online forum to speak with others.
	View our COVID-19 guidance for more advice on staying safe and well during the pandemic
	Addison's disease or other forms of adrenal insufficiency can affect your emotional wellbeing just as much as your physical health. Read our article for tips to reduce the stress of managing a long term condition and more support for your  mental health.

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