Bad asthma but good SATS. A&E experience

[Cagsy27]

Had a bad attack yesterday and my daughter, a nurse (now community, formerly A&E staff nurse) took me to A&E at 11:30 am. I’m a retired nurse

Although I’ve been asthmatic from childhood, it’s usually well managed and this is only the third bad attack that’s needed hospital treatment and the first time I haven’t been treated really quickly.

A&E was very busy and stretched to the limit. J appreciate that. After an age, I was triaged. My SATS were good but BP much higher. However, they put me back in the waiting room for hours and left me. All the while I felt worse and worse, kept trying to get nurses’ attention saying ‘I’m asthmatic and can’t breathe’ but mostly I was ignored. My daughter kept trying too. One nurse told me that because I could speak in sentences and ‘looked pink’ I could wait.

Eventually I was taken through to a doctor, given a nebuliser with Ventolin and a handful of steroid pills, then x-rayed.

Finally got out of there but it wasn’t until about 9pm at home that chest started to feel easier. Nightmare. Throughout it all I felt that nobody took me seriously. It must have been obvious that I was in distress.

I’m not an asthmatic who wheezes, although when the doctor finally examined me she said she could hear wheezing with the stethoscope.

I do realise that good SATS would perhaps indicate the triage nurse to believe that as I wasn’t in immediate danger so could be sent back to the waiting room for a few more hours but the distress of struggling to breathe wasn’t taken into account.

One of the worst experiences of my life.

Does this happen often?

[Melanie1989]

I have had similar experiences unfortunatly. I do not wheeze and sats are always high but thats from me working really hard to get there! I always have a high heart rate with an attack but that triggers unnecessary heart tests and my asthma is ignored.. Last time i didnt get a nebuliser at all and ended up using a lot of ventolin till it subsided... that last a n e trip i was in the waiting room for 8 hours...

However i have been to a n e and been seen immediatly and treated and admitted all with the same symptoms! I really feel for you as there is nothing worse than being in a waiting room struggling to breathe, hours on end.. It has made me really reluctant to attend a n e now as i would rather be at home struggling than sat in an a n e waiting room!

So yes unfortunatly it is a common occurence, as if its not text book they dont understand but i find that approach very dangerous!

Sorry you had such a rubbish experience, hope you feel better soon.

Mel

[Cagsy27 in reply to Melanie1989]

Thanks for your reply. I’m sorry that you’ve had awful experiences. You seem to have had similar experiences to mine of immediate help, then the opposite.

I can understand your feelings of not wanting to attend an A&E any more.

Frankly, I’d rather die in my own home than go through that again. I’m usually very reluctant to attend A&E but felt so bad yesterday

[Lysistrata Administrator Community Ambassador]

I'm pretty similar to Melanie and have had the same thing with wildly different responses to pretty much the same presentation! Plus the HR and unnecessary investigations thing where they ignore asthma.

I usually go to where I am seen in clinic and the A and E is usually good despite the fact I have weird asthma and manage not to wheeze, not drop peak flow as much as expected even in a severe attack, and often maintain reasonable sats - though the finger monitor can still be fine even when ABG isn't!

I have found often (and I have been way too much!) they can be practical and look at work of breathing and other things, as they should have with you. However, sometimes you do just get someone who is hung up on the textbook and will not listen, and that is horrible. Last time I had a dr who seems very nice but is completely obsessed with peak flow. She knows I attend a severe asthma clinic and I have a summary with how I present but she wouldn't even use my best peak flow to compare - never mind anything else, it is best practice to use the recorded best if you have it but nope, she knew better so ignored that it wasn't far off 50% of best which for me is a drop given I can have a severe attack with higher. She then told me that nebs not helping meant I was fine and didn't need them anyway, when I have been in resus with them worried and deciding on escalation of treatment because I am not improving with nebs! She tried to.send me home saying I was safe and fine but I wasn't even able to make it to the door of the bay. Luckily the consultant came and watched me trying- he decided to admit and give me the treatment the other one wouldn't.

It is horrible and does put me off going unless I really can't avoid it, even though other times I have not been my worst and they have still been lovely and treated me. Sorry to hear you had such a bad experience- I hope you don't need it again but if you do maybe they will ne better next time as it does vary.

Also hope you feel better!

[Cagsy27]

Thank you for replying. It does sound as if better education for health professionals about asthma in A&E departments is needed.

Not wheezing during an asthma attack seems to be quite common from my ‘research’ online. I only ever wheezed during attacks as a child. As an adult shortness of breath without a wheeze has been my MO

Your experiences have been horrendous. No-one should have to wait hours in a waiting room during a severe attack, regardless of SATS results. It’s extremely distressing and inhumane for anyone.

[Lysistrata Administrator Community Ambassador in reply to Cagsy27]

Yep - or plonked in a side room and ignored as I have sometimes had! (That is usually when triage is good but initial dr is looking for wheeze). I can't blame you for not wanting to go back!

Last time the front desk nurse/reception tried to send me to urgent care with a 2 hour wait. I was unable to speak in full sentences so while I usually go with the flow I knew this just wasn't going to work and managed to say I was struggling and really did not think that would work. Luckily they did listen and triage then sent me to majors but sadly Dr Smile and Nod was on! Still, I felt I was right not to be pushed to UCC - it helped that I knew it was not an appropriate triage, which gave me confidence. Usually the front desk is good and I have ended up in resus at that level before so again it does vary!

[TJRN1959]

Yep, sounds familiar. So many NHS people seem to believe that in order to have asthma you need to be wheezing like an old steam train, blue in the face, SpO2 sub-90%, coughing fit to burst, and with a peak flow measured in single units. This is categorically not the case, but as asthma sufferers we appear to be at the sharp end of a diagnostic mind-set that relies on numbers to the exclusion of clinical judgement. The numbers are just a part of a complex jigsaw puzzle of signs and symptoms, but my direct experience is that there is a tendency to over-rely on them. I'm also of the belief that many basic diagnostic tests are incorrectly conducted and recorded. Peak flow, BP and SpO2 need to be taken carefully and accurately if they are to mean anything. Spirometry is to be done under scrupulously controlled conditions if it is to provide a reliable diagnostic pointer.

[Miaxx]

Hi I'm new here and just reading Tru all ur comments...I'm also sick and tired of struggling to breathe but if my sats are normal I'm just brushed off...when my breathing gets bad thou I get flutters in me heart almost like it's struggling to beat does any1 else get tis here???

[Suzsugarbaker in reply to Miaxx]

I get the flutters!

[Miaxx in reply to Suzsugarbaker]

Did ur doctor say tis was normal with asthma...not that it feels normal very scary

[Suzsugarbaker in reply to Miaxx]

He didn’t say. I actually haven’t seen follow up dr with it.

[WheezyAnne]

Exactly the same thing happened to me in January when GP sent me in to local hospital (Consultant at Addenbrookes wanted me in, but it isn't my nearest hospital). Although my peakflow is around 120 to 140 I can speak in full sentences when I am sat down and rested. My body has got used to and adjusted to the smaller volume, so the Consultant has advised,. I asked because I am aware that earlier in my life when peakflow much higher, I would struggle to breathe and talk, even when peakflow 300. Anyway, my local hospital queried whether I really was that bad that I needed to be admitted? I was sent home after one nebuliser with antibiotics and steroids. That was the Monday. On Friday I went to Addenbrookes A and E, and was admitted and kept in for 3.5 weeks.

[Cagsy27 in reply to WheezyAnne]

That’s appalling! I’m really shocked by the responses here. Better education is needed.

[Kashwi1]

Sad to say I have also experience this kinda of treatment in hospital on many occasions too!

[Spikedog66]

Yes unfortunately it happens far to often. I myself was a nurse and at times shake my head and feel ashamed at the state the nhs is in. What has happened to the best free service in the world? Basic care has totally gone out of the window, machinery has taken over. I retired 3 years ago and due to ill health have been on the other side so to speak, oh dear me!!! I could tell you tales some even funny but won't bore you. I suggest you buy a nebulizer for home and ask your GP for ventolin and if you get into trouble you can take one at home until you see your doctor or seek emergency help, you and your daughter will have knowledge especially if your daughter worked in a&e you wouldn't have gone for nothing, maybe the staff didn't know some asthmatics don't wheeze. Cough variant asthma? Hope you feeling better you must have both have been so frightened. Take care😊

[Cagsy27 in reply to Spikedog66]

Thanks. I do have a nebuliser but didn’t have any Ventolin nebs because it was a new purchase.

I share your feelings of horror about the NHS.

I’m still not right and the x ray I had in A&E has revealed something worrying that needs further investigation.

I felt that I was treated as a senile old woman who was imagining things. Obviously not, although I appreciate that A&E staff don’t have the benefit of foresight.

I’ve made a non-official complaint about the department, although felt bad at doing so. If it prevents anyone else from experiencing what I went through it’s a start.

[anjyil]

I haven't been to the emergency yet, but we had some talks back and forth with my doctor here in Japan. basically, if you aren't less than 50% of your personal best, it seems like it doesn't matter. This makes no sense to me, as being at 80% was the worst experience I ever had. Headache, can't move, can barely breath or speak---and yet if I were to go in, I would be shrugged off because I am above 50% and my SATS are above 90. After learning this, I did some research and found that it seems to be the norm. I am coughing variant, no wheeze--and after four years, my doctor had the first test that showed inflammation in the lungs despite my many trials.

Sadly, quality of life doesn't seem to register for many practitioners, and it is hard for any professional to know everything they can encounter--so I have a little sympathy. Still, to be waved off while you are suffering is the worst thing. My husband was very angry at my doctor--he wanted my meds re-examed and possibly changed because they don't seem to help much, just band aid it. I guess the doctor was having a bad day that day, too (this was not ER). In the end, I sat at the station to get an inhaled medicine and I was crying the whole time I was so stressed. I have had myself at 80% only three times that I know of during my diagnosis, and it was just...horrible. I dread it happening again, and I know it will because I know my asthma is not well controlled. That makes it even scarier--so I kind of understand.

I hope you are feeling better and that next time, some one listens.

[Cagsy27 in reply to anjyil]

Thanks and sorry you’ve experienced poor treatment. I’m shocked to read everyone else’s experiences

[anjyil in reply to Cagsy27]

I was shocked at first, too--but after digging in, it seems like *most* of the time, the treatment comes from those that are a) overworked b)never had asthma and an occasional c) elitists who believe if you aren't severe or dying, you are wasting their time. Pretty typical of human nature, I think. Hopefully, things will improve more and more over time. Japan is actually still kind of behind on some things for asthma, at least from what I have read, but that Coalmine asthma scare made them catch up pretty quick on others.

[Spikedog66]

You are certainly not a senile old woman. You knew something wasn't right and you went for help. which wasn't the best of care but came very close to the worst. Sometimes it's the only way changes occur is to complain then maybe someone will listen so don't feel bad at all. Hopefully there will be no further issues or delays with investigations and required treatment. I wish you the very best 😊