I had the misfortune to have to attend A&E with an asthma attack. I feel very let down and wonder why I bothered.
I had just visited a relative in hospital when it happened. I gave myself 10 puffs of ventolin in a spacer and when no improvement set off walking very slowly, the relatively short distance to A & E from the cafe area in the hospital. To put this in context, I’ve had a chest and sinus infection for over 2 weeks, weaning off prednisolone and on second lot of antibiotics, so coughing a lot too. (No choice but to visit, as very close relative reliant on me.)
On arrival I couldn’t speak and felt very vulnerable, as you do when you can’t ask for help. Some patients/relatives helped me to a chair where I waited about 15 minutes to be seen.
To cut a long story short the doctor listened to my chest, SAT’s etc asked questions I couldn’t answer very well. She was very perfunctory and sent me with a nurse to sit near a cubicle. The nurse said doctor had said I was to have 10 puffs on my inhaler. I tried asking for a nebuliser instead as I’d already had 10 puffs on my inhaler and was told again what the doctor had advised. I felt very weak and in need of help but was left to do this by myself and then left without further ado for a further 25 minutes.
Still feeling short of breath, I asked a passing doctor for help as I had been completely ignored all this time. The first doctor took me back in to the cubicle and took my SAT’s which were fine (they usually are and after 20 puffs of ventolin wouldn’t they be? I don’t know). We had a half conversation, as I was still unable to converse, in which she said I had no wheeze and wouldn’t need a nebuliser as the nebuliser was just to help the wheeze! I told her wheezing wasn’t a symptom of mine and I never wheezed and that I had a nebuliser at home so why would they give me that, if it wouldn’t help me at all. I asked for a pen and paper and wrote everything down I wanted to say about my type of asthma, my treatments etc. but it didn’t make any difference to her attitude.
I wondered if this reason had been given to anyone else for not being giving a nebuliser. 🤷🏻♀️
When I attended the same hospital 6 months previously, they gave me one then, so has protocol changed? If so I might as well have saved myself some time, got a taxi home and had the neb at home! I felt that nobody took care of me, I know the staff are rushed off they’re feet, but a kind word or a tiny bit of help would have made a difference to me.
So at the moment the situation is this for me; I have the type of asthma that I’m on all the meds they can give me and still it doesn’t keep it under control, especially when I get a virus. My GP tells me to go to A & E if I get short of breath, but it seems there doesn’t seem to be any point now. The doctor’s there don’t seem to ‘get’ asthma if there is no wheeze and I’m not presenting as the ‘usual’ asthma patient. I’m at a loss of what to do when I feel really bad. I suppose I want some kind of ‘fairy godmother NHS person’ to help!
Sorry if this has gone on a bit (that’s only the half of it 😖).
Can anyone throw any light on this?
Thanks 😊
Written by
Celie1
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Sorry to hear about this poor treatment and certainly sounds unacceptable. See no reason why they wouldn’t give nebuliser treatment? Might be worth speaking to PALS about what happened and why treatment was poor. Doesn’t help you but might stop someone else suffering like this!
One thing I have noticed some people do here is a typed A4 information sheet about how their asthma affects them. This can then be given to staff in A&E, which would especially be useful when having difficulty speaking.
Certainly, please please please don’t let this experience put you off going to A&E. You mentioned a previous positive experience. It is important that you recognise, when additional medical support is required and act on it. One of the arguments about not giving asthmatics home nebulisers is because of concerns that asthmatics can very quickly deteriorate and if needing a nebuliser should be given one in A&E. I have a home nebuliser, and it has definitely kept me out of hospital when very unwell, but I’ve also been advised as to when I need to call at the very least 111 for advice.
I have thought about writing things down, but when I couldn’t communicate properly with the doctor, I wrote down the important details while I was there, she didn’t take any notice anyway. I have to say to be fair, when I saw a different doctor later, she was very understanding and compassionate so I recognise they’re not all the same, but it’s so upsetting and demoralising to be faced with uncaring attitudes from the onset.
I think the problem is, not that I don’t recognise when I need extra help, but that the help I need, is not available at A &E. Despite being told to go there when having an asthma attack, by my GP and no doubt the same advice would have been given if I had rung 111, the staff seem to be apathetic about asthma attacks and lump all asthmatics into one. So, I’m being sent to A&E, to be treated by someone who doesn’t seem to even know that not all asthmatics wheeze, and then not giving me a nebuliser because I don’t wheeze. Why do I have to wheeze to get some treatment and who made up this new rule? 😡😤
Where do I go from here? This kind of mentality displayed by frontline staff who are there to treat me and make me feel better and instead make me feel worse just makes my blood boil.
I actually don’t think there is a treatment for asthmatics like me, when having sudden flare ups. As long as A & E staff treat asthmatics with this lack of concern (not just this time, the last time I was plonked on a chair albeit with a nebuliser this time, then without even asking me how my breathing was, the nurse just expected me to march down the corridor to X-ray while I was still very short of breath leading to me feeling terrible by the time I got there) then I’m really not sure there’s any point in going there.
Sorry this is a very grumpy and negative email 😬Thanks for listening 😊
Ive unfortunately had terrible experiences in A and E and out of hours GP surgeries .. but I've also had some really good ones
I was in A and E during the dreaded C (because had a chest infection and no one would see me) the doctor in there was absolutely amazing ... they where soo busy (over 100 people waiting in the Unit) and I tell you the doctor must have been ex military she was cool and collected while being under fire from never ending patients
It's horrid being ill by yourself in a&e. When I was there by myself recently, I felt like they saw me as a difficult patient but it was just frustration because I found it difficult, due to my condition, to explain my situation and then as a result, was not being listened to. Then, one doctor said I would have to stay overnight due to problems with my heart and something found on my lung. Five minutes later a consultant came in and said I could go home. With no further explanation, he walked out. All very worrying...I do understand that they are rushed off their feet and need far more support than they are getting.
However, Bevvy has some great ideas there to help. As an additional thought, perhaps a letter from your gp to pop into your pocket outlining treatment you need in an emergency. Or a medic alert bracelet?Best wishes and I hope nothing like this happens to you again ...
Thank you for your support and understanding . It sounds like you had a tough time when you were there. Really worrying to be told you had a problem and then dismissed the next minute! Hope you’re ok now.
Yes, good advice from Bevvy and yourself. I really don’t think anything I would have said would have made any difference to that particular doctor. What puzzled me the most was her saying that a nebuliser was to treat a wheeze. I’ve had many nebuliser treatments, including in hospital and I don’t wheeze with my asthma 🤷🏻♀️, my symptoms are shortness of breath and cough.
The written information sounds good and perhaps a letter to try and "educate" them.
Might be worth a chat to one of the asthma nurses from Asthma UK to see of there's already a document you can present at A&E.
You have my sympathies as I'm not particularly a wheezer and that usually throws them. My SATS are usually spot on as well. As one doctor says I'm a very good compensator until I get very tired and then things can get rocky.
I'm also more of a cougher than a wheezer.
I wish they would understand the different presentations.
Yes, it should really be part of the doctor’s training to recognise that we are all different and to look at the wider picture. A few years ago I was seen by a consultant in the urgent care unit I was in after A & E. She was with a few doctor’s and saying to them SAT’s can be perfect one minute and then suddenly drop. At least she was doing her bit! 😆
Definitely make a written assessment of your experience and send it to PALs together with details of how you should have been treated for your specific symptoms. Their job is to review patients' experiences and to ensure that processes are improved as a result. Things won't improve unless patients bring under performance to the attention of PALs.
My friend was reluctant to speak up as they thought their parent, who was admitted at the time, would be more vulnerable if she complained. However, the effect was immediate and the standard of care was transformed into what it should have been in the first place.
I would also quote Asthma UK in your correspondence to PALs, just to emphasise that A&E put you in danger by their lack of treatment, “An asthma attack is a real emergency, and could be life-threatening,” says Asthma + Lung UK’s in-house GP, Dr Andy Whittamore.
“Getting help when you need it is so important, to make sure you’re treated quickly. Never think you’re wasting anyone’s time.”
My relative works on our local hospital PALs team and it certainly makes a difference having them on your side. I had a non asthma admission and the moment she became aware things really moved up a gear, to my relief. She always says that people don't complain enough.
I'm so sorry this happened! Unfortunately it's more common than it should be in my experience. I've had positive experiences and middling experiences in A&E/hospital, but also this kind of experience where they just didn't want to listen.
The national guidelines don't ask for a wheeze or lower sats for a nebuliser (though they can be confusingly written). But some staff do have fixed beliefs about it and I have even been lectured on why a neb won't help me because I'm not wheezing. Which is infuriating because it's just totally incorrect and shows they don't understand asthma properly, as well as patronising. But I tend not to have the breath to argue plus they talk over me anyway.
I totally understand feeling 'what's the point?' and 'why go again?' after this kind of experience. Unfortunately if you're in this position you do still need to go again - and they're not usually so bad every time! It's very frustrating and demoralising but you do have to keep trying - don't sit at home and avoid if you need more treatment, or think 'why go when I have a home neb?' Unfortunately it isn't just patients who 'abuse' home nebulisers instead of getting emergency help - I've heard of some instances of totally unsafe recommendations for their use from medical staff too. They should never be encouraging you to avoid A&E and just neb at home endlessly, and you really should have a strict plan for its use.
A few people have mentioned summaries and this can help - not guaranteed but I generally find them useful especially with less typical asthma. I did a post about them here which may help: healthunlocked.com/asthmalu...
I would also agree with what others have said about PALS. I should have complained on several occasions but never did because I felt it was my fault for going, that I didn't really need it, had been wrong to go and they were right (my consultants often also made me feel like I had been wrong to go to hospital even though I did need to). I felt what's the point, it's my word against theirs and they won't listen. But as Poobah has said - it really can change things. And this has been the experience of a friend with severe atypical asthma who has complained to PALS a couple of times about A&E and ward treatment. It has made one particular consultant who was often the problem behave himself much better with her and actually do what he is supposed to.
I couldn't easily link them but it may be worth pointing out that national guidelines (usually BTS) don't say you need a wheeze to have an asthma attack or that nebs should only be given for wheeze and/or low O2 sats. Sadly some local guidelines are dangerous on this point - for example London Ambulance Service actually does say (or has recently said) only wheeze/low sats need a neb which is infuriating and dangerous. Though in reality I have tended to get one from them despite typically having neither.
As others have said it may be worth giving the nurse helpline a call - you could ask them if there's anything you can use to point out that you don't need to be wheezing to get treatment: 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm
Thank you for all the information you’ve sent, it makes such a difference to know you’ve also been told the same as me. Also really helpful to know the guidelines don’t support what the doctor said. You’re a mine of information!😁🤗 .
I will write a summary to take to A &E if I can and think I’ll contact PAL’s, but will contact the nurse helpline first to make sure of my facts as you suggested.
I’m sorry you’ve had bad experiences, but glad you’re willing to share them. I feel so much better now ( frustration-wise if not asthma-wise!) with your support and that of everyone else on this forum. X
I do not wheeze. Both times I have been in a and e I just quote my lung consultant at them. I just say that the lung consultant said that I have a type of asthma which does not involve wheezing.
I explained all of that to the doctor at the time.. I was so frustrated at not having the breath to explain that I even wrote it all down while I was with her, but some people just don’t want to listen or understand 🤷🏻♀️
Sorry you had a bad experience in A&E it seems to go with the asthmatics territory ☹️
Could you ask your cons to leave instructions/information on your medical notes so that A and E docs ( or others) have some ‘official’ guidance when you arrive? They may not choose to follow it but at least yours and your cons position is clear.
If they are not in the same hospital maybe they can give you a letter saying the same?
I have this, not because I don’t wheeze but to make sure that they get resp consultant approval before discharging me ( long story!) But my point is that it is really helpful and just sometimes makes them stop and think even if they don’t agree…
Discuss it with your cons/hospital team and see what they think maybe..🤷♂️
Official guidance would be helpful. The problem is I’ve been discharged back to my GP. 🙄
After giving me a whole bunch of tests last year, the consultant explained that my type of asthma had a different pathway to allergic or eosinophilic asthma. Unfortunately, he said, they don’t know a lot about it but are involved with research at the moment. I don’t meet the criteria for being involved with this.
I am currently taking all the meds that are available until a biologic is developed that can help me and am relatively ok in between flare ups, the last one being about 5 months ago. In the meantime I just have to cope when I have a flare up, when I’m likely to have attacks on and off randomly for a few months before it settles again.
I might ask my verygood asthma nurse for advice at my next appointment in Feb, about what I should do in the A & E situation for next time.
I can relate to this completely and I'm so sorry you're been treated like this too. About a year ago my asthma got a lot worse when I was in hospital in London. I'd been treated on the ward with nebulisers, steroids and was being looked after by Intensive Care Outreach. Things improved a bit and I stupidly asked if they would discharge me as I thought I'd be OK (I wasn't!) Anyway, the following day I spoke to my GP who sent me straight to A&E due to my symptoms getting worse again. It was the most horrible experience - like you, I wasn't able to speak. They wouldn't let me bring my carer in (which I later found out shouldn't have been allowed to happen) and when they checked my SATS they were OK, and they couldn't hear a wheeze (I rarely wheeze). The Doctor refused to give me a nebuliser or steroids, despite me desperately trying to let them know I'd been on them only the day before and had been improving. Instead, the doctor gave me a plastic bag and told me to breathe into it as I needed to slow down my breathing. It obviously didn't help and I was then discharged, which was terrifying. I really wish I'd made an official complaint at the time, but to be honest I was too unwell.
The following day, my GP sent me back to A&E where I was assessed by the Medical Team. They put me straight on a nebuliser and steroids and admitted me to the ward, which just made me think even more that the doctor before hadn't treated me properly.
I would really urge you to contact PALS, as it's important to resolve this and for A&E doctors to understand that not every asthmatic wheezes and that we can compensate for a while with our SATS but then deteriorate very quickly. If your asthma is still uncontrolled too, I would recommend asking your GP to refer you to the hospital team, as they can often do more to help control things than the GP can. Thankfully I saw my local hospital team, who decided I was too complex and so referred me directly to The Royal Brompton and they have really helped. So don't put up with uncontrolled asthma symptoms, which is what I did for quite some time because I assumed that's what I had to do. There is help out there and if you can get under a hospital consultant, they may write you a short letter about how your asthma presents which you can then take with you if you ever have to go to A&E
That sounds absolutely terrifying for you! What appalling treatment… to be asked to breath into a plastic bag! What kind of training did that doctor have ! I’m glad you got the correct treatment eventually.
As I explained in my email to Pipsqueak, I was under the care of the Consultant for a while, but he decided he couldn’t do anything else for me because I’m on all meds available for my type of asthma and at the time my asthma had been fine for a few months.
I am going to make a complaint to PAL’s though, because it is unacceptable for doctor’s not to know that not all asthmatics wheeze and to give unhelpful treatment. It might improve things maybe?
Celie, I am a retired nurse anesthetist in the US and found an excellent web site: Pulmonarywellness.org. Despite my medical knowledge I learned strategies to reduce breathlessness and proper use of inhalers. I also learned breathing techniques to reduce panic. Focus is on whole person. No cost and run by Drs of respiratory therapy.
As far as breathing control goes, I follow Buteyko breathing method which is very helpful. I don’t think I have any kind of panic kind of breathing and have had my vocal chords looked at and VCD ruled out. I follow the recommendations such as nasal breathing, abdominal breathing etc and mostly feel in control… until I’m not, if you know what I mean 😆
I will have a look on the website though and look to see if there’s anything I haven’t seen before on there. 👍
I also did Buteyko and found practices helpful but did get other help from Pulmonary Wellness . I also have restrictive lung disease from scoliosis despite surgical correction.
When you go to the Internet, after after finding Pulmonary Wellness.org, click “education”.
Fantastic stuff plus a Facebook page, Webinars and a home “Pulmonary Bootcamp” which is 6 week home, self help exercise program starting slowly. You do at your own pace but it helped me and I’m 80 on O2 24/7.
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