This is intended as an awareness post, not me using it as an opportunity to slag off the NHS or particular members of staff. The main problems I encountered recently in a&e were because of a lack of awareness, not because of a lack of skill. There were many people who were on my side during my recent hospital admission, and I was happy with the way senior staff eventually handled my issues. However it was probably the most horrendous admission to date and is, sadly, the way that a lot of patients with Adrenal Insufficiency are treated when accessing emergency care. Hence the need for an awareness post.
I felt ill fast, oral HC wasn’t shifting it so I rang 999. The dispatch found my red flag and said I was on a red 1 (fastest call out) but there was a high number of users so she couldn’t guarantee how long. I decided I’d better do my injection myself to be safe but the crew arrived before I’d had time to draw it up fully and administer it so were able to give it to me IV. That’s a super quick call out by the way- 4 minutes from me picking up the phone to paramedics on scene. If I’m in suspected adrenal crisis, things are supposed to move that quick. An example of the system working at its best and most efficient.
I think their speed and our joint decisions possibly might have saved my life that night, because when we got to hospital is when it started to go horribly wrong.
I was triaged incorrectly on arrival
This was the major problem. An administrative error/lack of knowledge nearly killed me. The wonderful paramedic rang ahead to resus to let them know I was coming in but resus said that because the crew had stabilised me, I could avoid resus providing I stayed that way by the time I got to hospital. Yep, we all agreed that was a good plan. The paramedic handed over- it was the best hand over I’ve ever had- but the receiving nurse hadn’t heard of adrenal insufficiency or addisons and didn’t write it down and triaged me as ‘abdo pain’ instead, which was one of my symptoms, but not the cause. This meant that instead of having immediate bloods, fluids, IV HC and pain relief, I didn’t get anything and was put low down on the priority list, assigned to a very junior doctor with very little experience.
There was a delay in bloods
It took them an hour to come and bleed me, and that hour is crucial. A suspected heart attack patient wouldn’t have to wait that long, neither should I. They also should come back asap to either rule in crisis or rule it out, but it wasn’t prioritised because my chart was wrong.
I wasn’t given pain relief for an hour and a bit.
This is bad for any patient but particularly bad for me. Pain drains cortisol fast and I already didn’t have enough on board. The doctor wouldn’t write any up for ages so the nurses couldn’t give me any.
The doctor dismissed me to the nursing staff
I complained of feeling very unwell a number of times. I kept telling my nurses I needed more IV HC but they kept coming back saying ‘the doctor says your BP is fine so he’ll come when he’s ready’. I kept saying it wasn’t and tried to explain how my BP goes up rather than down when I’m acutely ill. But the doctor refused to take me seriously and kept passing messages via the nursing staff, making judgements based on my incorrect chart and his textbook knowledge.
I had a drug interaction/sensitivity which wasn’t dealt with
One of the anti sickness IV meds made me feel really ill and I blacked out for a few seconds. The nurse immediately told the doctor but he wasn’t bothered. This should have been followed with an IV dose of HC stat to counteract the further stress to my body. but it wasn’t given despite me asking for it. I hadn’t had an anaphylaxis reaction, which is what the doctor was concerned about, but he wasn’t aware that any kind of reaction in a patient with AI causes us huge complications without appropriate treatment.
I developed a temperature which justified an IV dose
But again, my request was ignored because the doctor wasn’t aware of sick day rules.
I was refused IV HC despite clear, clinical reasons to back it up.
Which is unacceptable. I tried to get my HC refusal letter out, given to me by Addisons U.K., which basically says ‘I have made you aware that I have a life threatening condition which you have refused to administer medication for. Giving me IV HC won’t cause me any harm in the short term but could kill me if I don’t have it’. But I must have handed it over in my pack the last time and forgot to replace it- that’s completely my fault. But the letter is meant to be used as a last resort, so I shouldn’t have remotely needed to have got that far in the first place.
The doctor tried to cover up his mistakes
Some doctors find it hard to admit when they’ve made a mistake and plough on regardless. Which might work if you’re not a frequent visitor to a&e, but doesn’t when you know how everything is supposed to work. When he eventually came to see me, he didn’t take a patient history. He didn’t ask me about other medical conditions. He said he’d run a set of bloods but because I was triaged incorrectly and he didn’t come to see me before ordering them, they didn’t include ones that were appropriate for me, but for abdo pain instead. Aside from that, this admission was caused by emotional stress not infection, so that won’t show up on the blood tests he’d run. He then waved the chart at me and declared me fine and that I could go home. Basically he had his plan worked out based on my chart and I had to fit into it. I’d used my injection, meaning I no longer had one, so I said I was worried I’d decline again and wouldn’t make it back to hospital in time if I needed it. His reply was awful- I’d be fine because I had my oral meds. No. Oral meds won’t save my life. And at this point I couldn’t sit up let alone walk.
He insisted he’d followed addisons protocol and gave me a patronising lecture as to why he was right and I was wrong. Except he hadn’t followed any addisons protocol at all, which I pointed out. His reply was ‘I’m not taking responsibility for this, you only became my problem 10 minutes ago’.
Stress makes me more sick so by now I was a big mess. And feeling terrible.
I asked for the nurse in charge who went and got the most senior doctor in the department. She apologised profusely many, many times and tried to help sort a plan for that night and for the future. I liked her thinking, she was fantastic. And I got my IV HC stat. She started off backing up her colleague, which is to be expected, but once I’d explained she said she hadn’t been told the full story. In short, people were either not communicating or they were choosing what to communicate to each other.
If junior doctors are reading this (or any HCPs for that matter), I don’t expect you to know everything and I’m happy to help fill in the blanks. But you can’t and shouldn’t rely on a chart telling you everything is ‘fine’ when the nurses are coming and telling you it isn’t. Take responsibility when you mess up- yeah you’re liable but patients have a lot more respect if you say you’re unsure rather than trying to quote a protocol which you’re getting wrong anyway and definitely didn’t follow. Patients who go to hospital a lot know a lot about their illness, don’t patronise us. Don’t call me ‘a problem’. What a way to show compassion! Bite the bullet and apologise on behalf of your colleagues/whatever went wrong because a lot of healthcare is handholding- if he’d apologised I maybe wouldn’t have eaten him alive so much. Yeah it sucks, but say something like ‘I’m sorry you’ve had such a rough night’ or ‘I’m sorry you felt your care hasn’t been very good, what can I do to make it better now’ if you can’t bear to actually apologise. It’s apologising but not actually taking liability for it. And it goes a long way in improving patient experience.
I shouldn’t ever have to say the words ‘I could die if you don’t listen to me’, which I did say a lot that night. Why wait until I’m critically ill because you can’t think outside the box? Think about the bigger picture. I’m not just a bp and a set of bloods. In 19 years of having worked for the ambulance service, I was the paramedic’s second AI patient and she was genuinely gutted that her student was on his day off because she wanted him to have learnt about it. As a chronically ill, rare patient, no one is expecting you to diagnose or wave a magic wand. But you need to treat the patient, not the chart. If you can’t see beyond that and aren’t willing to learn, to be blunt, you shouldn’t be a doctor.
I’ve been incredibly lucky in that I usually have very good care at that hospital and that night was a blip. But that’s unfortunately how a lot of patients with AI or are treated a lot of the time. It’s not because the staff aren’t skilled enough to be able to manage it, it comes down to a lack of awareness of the condition and how we can deteriorate very quickly. There is nothing more terrifying than having to argue for drugs you need to stay alive when you feel like you’re going to lose consciousness at any second and are panicking that if you did pass out, the staff wouldn’t know what to administer or why. A little bit of education would go a long way in treating this disease.
I don’t like ending on a negative note, and actually I’ve had some very positive A&E experiences. Read this post to see how good emergency care for Adrenal Insufficiency can be 🙂