My A&E “go away” story

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.”

Please don’t.

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’.

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5 thoughts on “My A&E “go away” story

  1. Ian Bish

    My story is nowhere near as bad as yours, but a while ago I developed a very fast heart rate (>130bpm). I knew it wasn’t normal for me, became quite worried, and rang NHS Direct. They advised I ring the OOH GP service. I did, and had an appointment for about an hour later. The GP seemed quite disinterested, but as I was very anxious she (reluctantly) gave me a letter to go to a nearby MEAU.

    As soon as I arrived I had an ECG and blood tests. I was told to wait overnight to repeat the test for cardiac muscle damage. After a long night watching repeats of Jeremy Kyle, I had another blood test, a chest x-ray and an echo-cardiogram. All seemed well and I left there about ten in the morning.

    They treated me well at the MEAU, but I did feel, although they didn’t say, that I’d wasted their time. That was probably true with hindsight.

    But my point is that I *knew* something didn’t feel right for me. If I’d ignored it I may not be here to reply to this. As it turned out that wasn’t the case. But I wasn’t to know that.

    Reply
  2. Dr John Hughes

    Unfortunately not an isolated occurrence – and I think junior staff are more judgemental than we used to be, perhaps as a result of a toxic combination of target and workload stress (hours less but intensity increased) plus lack of experience and knowledge of less common differential diagnoses.
    Perhaps I am being unfair, but there does seem to be a prevalent attitude amongst many hospital staff nowadays (and not just the doctors) that patients are a nuisance which interferes with whatever the HCP feels they should be doing (???) rather than the central focus and raison d’etre of the job. Is this a natural consequence of society’s unquestioning acceptance of political unevidenced spin to view all disabled and those on benefits as ‘scroungers’ and all immigrants as opportunist healthcare and benefits tourists? We do seem to be becoming (with some notable exceptions) a much less caring and tolerant society.

    Reply
  3. Julia

    Although not quite so ghastly, this reminds me of some aspects of my partner’s experiences.

    Probably most of the difficulties in A & E are short-staffing, but this is not the whole story. Staff attitudes can come into it. My partner has a chronic condition.

    Once when we called an ambulance the staff refused to take him because he only scored 1 out of 10 on pain (He had other problems like fever) and one member of the ambulance crew was giving off strong whiffs of general disgust. He was eventually taken by ambulance car … and admitted. (He was very ill.) On another occasion the GP told him to get an ambulance. The hospital decided there was nothing wrong with him (There was, as it emerged a little later on.) and we were very sniffily told to make our own way home (Luckily I had enough money for a taxi) because ambulances were not for well people.

    My partner has deformed kidneys which make him a kidney stone factory and he has various permanent damage to his body because of this, a body covered in scars from operations and a medical history as long as your arm. We have lost track of the times that a (usually) young doctor has looked at him a little contemptuously and said ‘So what makes you think you have a kidney stone problem then?’ and we have been forced, often when he is in pain and feverish, to recite complex medical history which is then busily scribbled down at great length (sometimes inaccurately I have realised) before anything else happens. (And we almost always, deliberately go to the hospital where most of the work has been done.) He is also VERY allergic to penicillin – after a very bad reaction he has been told that if he takes it again he will probably die: Again, quite often the same slightly contemptuous look: ‘So what makes you think you are allergic to … ‘ Quite often we could both scream.

    Reply
  4. drcrunch

    Reblogged this on drcrunch and commented:
    thank you for sharing this – I’m a junior doctor and it has made me think about what kind of message we give patients based on the manner in which we discharge them from a&e.

    Reply
  5. drt

    thank you so much for sharing this. I am a junior doctor and like drcrunch above, it is very helpful for me to hear these stories — both yours as well as comments. i have a few points, if i may, to add to the discussion.

    first of all, about myself and my own flaws. by training, we are taught to be skeptical and examine the evidence of pretty much everyone (including other doctors, other staff and most importantly yourself) — this doesn’t mean patients (or anyone) should be treated without respect. Whenever I am communicating with patients, I try to understand their concerns, ideas of health and expectations and alter my treatment and communication adequately. After all, we can be treating whatever condition you have perfectly but if we don’t address your concerns and worries, this is not good enough. I do try to listen to my patients and try not to interrupt or judge their description like Julia was saying– but after a long day of oncall (usually 12 hours but more like 13-14 hours) with no-break and after several oncall days like that in a row with still lots of patient to be seen, I do get abrupt and could appear ‘rude’.

    I know this is not acceptable but I know that I still need to work on it. I apologise to whoever I may have acted in such ways.

    Secondly, it is a systems issue. The primary (community) care and secondary (hospital) care are both significantly stretched at the moment. This is because of increasing demand (sicker patients, unrealistic demands from a handful of people- see below and more complex patients) and reduced supply (closure of community hospitals, GP clinics, physiotherapy, psychiatry services). This combination is a perfect storm for current crisis. Frankly, my own experience as a patient and speaking to other patients, a lot of people would rather be treated effectively in the community by the person who knows you (in the case of betabetic — her own GP) but current cuts means none of that is going to be possible.Like your other post, once community care is reduced, whatever happens patients end up in A&E, which stretches secondary care significantly.

    I have also seen patients so many times in A&E who require intervention but not acutely and not as in-patient. Due to the way system work, I cannot refer them to the relevant specialist but has to be done by their own GP. and good luck getting appointment with your GP. The best I can do in this circumstances is to personally ring and speak to the GP or sometimes have to write a verbatim letter that GP can essentially copy/paste for hospital referral and fax it. So the referral system currently is designed for an ideal world –and we all know fully well the world isn’t.

    Finally, we are not supposed to but we do suffer from ‘cognitive bias’. A&E staff particularly have the hardened, battle-ready faces as almost everyone who has work in A&E long enough has personal stories of being threatened, being spat upon, or even worse attacked. After a while, you have developed that hardened attitude.

    This is my two cents. hopefully we will be able to get a health system which is better for patients and better for doctors. 🙂

    Reply

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