I’m normally a fan of Resilient GP but today’s blogpost on how to manage ‘inappropriate demand’ in acute services filled me with dismay. It makes many points that I nodded along with, but then slips further and further into patient-blaming, culminating in:
“Patients who attend A&E or OOH inappropriately need to be told to go away.”
Two years ago, I had a series of A&E attendances where my primary complaint was asthma that was objectively moderate-to-severe, and subjectively not-normal-for-me.
The first time, my GP sent me in. My breathing improved after a couple of nebs, but a senior consultant was concerned by the fact that it wasn’t my standard pattern, and noted my unusually low blood-pressure. He admitted me for 24 hours for monitoring. I spent a night in MAU and went home the next day – under strict instructions to come sooner next time and never to hesitate if I couldn’t get my asthma under control.
The next time came about six weeks later. I’d had an acute attack that wouldn’t resolve overnight, though I also felt generally terrible. I saw my GP late morning and she was concerned enough to ring an ambulance. The paramedics were great. The department was busy. After a couple of nebs my breathing improved a bit but I still felt awful. I knew, I just knew, that something was wrong. Again my blood pressure was low, but based on matching my previous admission it was passed off as ‘probably normal for you’.
As the 4 hour mark approached the junior (FY1, 1st week in A&E) doctor became impatient with my reluctance to say “I’m fine now!” I was scared by how unwell I felt, I had palpitations and chest pain on every breath and she decided that this was due to ‘anxiety’. I asked what I should do if I deteriorated and she said ‘You don’t need to come back – if you do, it will be treated as a new attendance and you’ll have to start from scratch and be triaged and have a long wait and we won’t give you any more treatment anyway.’
In short – she told me to ‘go away’. She specifically said “It is not appropriate to treat this in the hospital – you can be treated in the community.”
At exactly 4 hours, I was turfed out of the cubicle to sit in the waiting area until my partner could collect me. It was embarrassing because I couldn’t stop crying because I was scared. While I was still waiting for my lift, the doctor came to find me – “your bloods came back a bit weird, you’ve probably got an infection or something… see your GP”. The same GP who sent me here because, having met me several times before, she felt I was seriously ill? Right.
The whole experience was humiliating and terrifying. I probably should have gone back to hospital a few times over the following weeks, but hanging on at home, just-about-able-to-breathe, seemed preferable. My GP had referred me to the asthma clinic so it was just a waiting game. And then one night I had anaphylaxis to a new medication, and we followed the drill and after I’d used my epipen, we dialled 999. The ambulance took almost an hour, and by the time they arrived the adrenaline, piriton and masses of salbutamol had worked pretty well. They were openly grumpy at having to come ‘out of area’ due to cuts in our local services. They dumped me at A&E saying my heart rate was still high but it was ‘probably anxiety’. (I challenge anyone to have an epipen and not have symptoms of anxiety afterwards.)
I was put in a cubicle with no monitoring, no nebs, no oxygen, no obs. I started to get worse again but the nurse told my partner to go away from the nurse’s station, where she was asking for help, and that I was just having a panic attack – according to my previous admission I ‘had anxiety’. I was refused IV hydrocortisone. I went back in to anaphylaxis, had a total bronchospasm and ended up having to use my second epipen. Because my second attack wasn’t observed, the nurse doubted that it had actually happened. I was chided like a small child for having administered the epipen myself. Then we were told that because I’d used my second lot of adrenaline I would have to be admitted. There then followed a surreal 36 hours in MAU in which I was refused treatment and ignored by the nurses, refused discharge on ‘psychological grounds’ and also refused a psych consult. On the basis of one very inexperienced Jr Dr and physiological symptoms of anxiety following administration of adrenaline I now had a ‘diagnosis’ of anxiety disorder.
Eventually on the Monday I saw a respirologist, who diagnosed severe mucus-plugging asthma – I had no wheeze because much of my chest was silent. He prescribed hourly nebs and had me moved to the respiratory ward, where I got great treatment for a few days until I was stable enough to leave. Anxiety wasn’t mentioned again.
I was left terrified of A&E. It became the place where people who could help you tell you to ‘go away’. I didn’t have anxiety before, but I certainly did afterwards.
I’m just very lucky that my GP never once hinted a ‘go away’ – in fact she told me she’d written to complain about my treatment at A&E. Over the next few weeks I got sicker and sicker but she was always there, always welcoming. Finally a new symptom hinted at an endocrine problem and she managed to persuade a really top endocrine consultant at the big hospital in the city to see me – I was admitted that day. He didn’t find exactly what he expected, but he found enough weirdness to justify a lot of tests. About a week later I got a phone call saying “come to hospital… you need to be admitted” and they diagnosed me with Addison’s.
The ‘anxiety’ and ‘panic’ and high heart rate and low blood pressure were symptoms of Addison’s crisis. As another endo in our department says “An Addison’s crisis is about as poorly as you can feel without being able to point at a specific symptom.” In my case the only clear symptom was asthma and allergies – due to having pretty much no cortisol in my body. I had so little cortisol that they don’t really know how I was walking around. The next minor infection or accident would have killed me. I was in crisis at diagnosis. I felt like I was dying, which was accurate, but I refused treatment until they had finished the tests the following morning and had a cast-iron diagnosis, because I was so desperate to have something to counteract the ‘go away’.
But it hasn’t worked. Even though I’m now officially diagnosed with Addison’s, diabetes and brittle asthma, even though I have leaflets and a care plan that give specific circumstances in which I should go to A&E, and an official card from my consultant that describes the treatment I need (as a minimum), those ‘go away’ experiences still stay with me. And not just me, my partner, my step-son, my parents – we all lost faith that when you are seriously sick the NHS won’t just turn you away with a flea in your ear.
We no longer use the little A&E who told me to ‘go away’. For clarity that was Airedale hospital. Instead we drive about 2 hours to go to the A&E at St James’s Hospital, where I have only ever had great treatment in A&E. But we still go through a few hours at least of me bargaining with the universe that I’ll do anything, anything, to avoid having to go to A&E and face the possibility of a ‘go away’.
I’d rather deteriorate until my obs are bad enough that I know there is no possibility of the ‘go away’. I know other people with LTCs who do the same. I have friends who will sit in the car park until they are confident that they will get taken seriously, because the earlier you go, the more the chance of a ‘go away’. It feels safer to go in unstable and straight to majors than to have the ‘go away’ and then have to come back a few hours later and contend with being treated as though you are a hypochondriac.
So – please, if you feel that they’ve used the wrong path, redirect patients kindly. Give advice about self-care, apply layers of triage, have an on-site pharmacy, run multiple queues, get rid of the ridiculous 4 hour target, but never, ever tell a patient to ‘go away’. Because once in a while, that person that you think is being ridiculous will be really sick. And if that person is really sick, they might need to present at A&E repeatedly in future, and making them extra miserable about that experience doesn’t fit with ‘first do no harm’.