Philippa's story: stomach bug triggers adrenal crisis
Philippa explains what made her most recent emergency hospital admission, with gastroenteritis, a smoother and more successful inpatient experience...
A disastrous encounter with gastroenteritis one evening, involving more than 12 unpleasant episodes of diarrhoea and vomiting in two hours, swiftly led to an unplanned emergency admission to the nearest hospital.
I self-injected after the second episode of vomiting, feeling so unwell I lay on the bathroom floor to inject. The glass vial shattered, scattering shards of glass over the floor, but fortunately, I had spares.
My family called an ambulance. To my relief and surprise, my care was well managed at the local general hospital – both in Accident & Emergency and during my subsequent stay on the endocrine ward.
Q: What made the difference this time, compared to a previous dismissal from an unspeakable A&E unit elsewhere?
- Implementing the ADSHG adrenal crisis guidelines
- Being registered with the ambulance service: My mother was able to tell the 999 control room I was flagged for priority ambulance response. My parents could have driven me to the hospital, but knew from previous experience that I would get a better response if I arrived by ambulance. The paramedics would have carried out a preliminary assessment at home and put me on a drip. Just as importantly, I would be lying down and would continue lying down until I was reassessed in A&E, putting less strain on my low blood pressure.
When the First Responder arrived, my parents handed her my medical summary document from the ambulance service. This made it clear I wasn’t just someone with a stomach upset but an Addison’s patient on the edge of a crisis. She immediately phoned for a paramedic on ‘code red’. The nearest available ambulance was 40 minutes away. The First Responder was not trained, and therefore not allowed to inject hydrocortisone, so it was important that I had my injection kit readily accessible and knew how to use it, as do my family, having watched the ADSHG injection 'how-to' videos.
- Using my Latest hospital letter: The First Responder asked my parents to find my latest hospital letter. This became one of the most important pieces of paperwork throughout my care as it bullet-pointed my diagnoses, medications and dosage along with a summary of my recent history and tests being conducted. Each time I was handed over from one care team to another, it was photocopied, discussed and passed on.
Adrenal crisis steroid emergency card
This was referred to both by the ambulance crew and the A&E team, and again gave authority to anything that I, or my parents, suggested. The emergency card was then kept propped up on my hospital bedside cabinet – so everyone knew that an Addisonian crisis was a ‘life-threatening condition’ to be treated seriously. It meant the many different doctors and nurses who saw me knew what they were dealing with immediately, whether I was awake or not. Each time someone would come up to my bed, it was helpful that they could see the card, so they knew the type of care I needed, more quickly and accurately than I could describe in my semi-conscious state!
ADSHG Update: since Philippa's experience, the NHS Steroid Emergency Card and National Patient Safety Alert have come into place. We recommend carrying the NHS Steroid Emergency Card with you at all times.
Hospital steroid stickers
We put a steroid alert sticker on the front page of my hospital notes. So everyone knew I needed continuous steroid cover. Without fail, every nurse who cared for me asked what would happen if I didn’t get my steroids! And I was in the hospital for three days, so that was a fair number of different staff who didn’t know.
Buy 'steroid-dependent' stickers online
Patient advocate
I was so wiped out by it all that I needed someone else who knew about my condition to speak on my behalf and to alert busy staff to the need for more IV hydrocortisone when I started dipping into auto-consciousness. Fortunately, I had my parents with me.
My own medication
I keep a selection of all my different drugs in a make-up bag, so it’s a discreet and easy thing to pick up and go. I kept it with me throughout my hospital stay, failing to admit to its presence when it was suggested in A&E that I might want to hand over any drugs I had brought with me. When I was later transferred to a ward and was no longer on IV hydrocortisone, this proved useful as some of my drugs are 'special order' and not regularly stocked in hospital pharmacies.
Lovely, caring people
Every single person who was involved in my care was lovely, no matter how busy or tired they were. They were willing to listen to us, and the ADSHG made their job easier by providing online guidance that is clear and authoritative, for ambulance, medical and nursing staff to follow.
The whole thing was still horrible and scary, but having the knowledge and resources to guide those in authority through the situation, gave me and my family control and meant that I received the care I needed. Having the information printed and with me in hospital was vital. I’ve had Addison’s since I was 16, and in the seven years since then, I have had multiple crises. This was my longest stay in hospital, and my best managed episode. I really feel like I’ve learnt a lot even though I thought I was prepared before!