So I am currently an impatient and have been since the 28th of December. I have eosinophilic asthma - no wheeze and my sats don’t drop unless I am critically sick. I was in resus when I initially arrived and cannot fault the care given, I had back to back nebs and magnesium within an hour! The put on 2 hourly nebs and admitted. My specialist team had said I was not for steriods as I have a lot of high dose steriods in the last 8 weeks with little break. I have been seen by 2 medical consultants and my respiratory consultant - he put me on 48 hours of IV hydrocortisone as my eosinophils were 2.6. I am on the AMU hence another medical consultant getting involved. She said she would discharge me yesterday but I was adamant that I wasn’t going to be leaving without the respiratory consultant seeing me and making and plan with my specialist at Guys Hospital.
Last night I was asking for nebs from 6pm - by the time I got them was 7.55pm - I knew by that point I had gone past needing nebs I was so tight! I got a repeat neb at 9pm again this did nothing for me. The medical dr came and reviewed me and said she had read my notes etc seeing that I have had lots of admissions. She listened to my chest commented that there was no wheeze - well if she has read my notes she would see I don’t wheeze I just get tight and short of breath! She asked me what I think I needed and I said magnesium, she said that she would go and discuss with her SHO and then come back. 2 hours later still perched on the side of my bed trying to breath and get some control, the nurse bleeps they dr - she reports that as I don’t have any wheeze and my sats are ok that I don’t need treatment! The nurse told me to relax and try to sleep! Well I am ashamed to admit it but I lost it slightly, I was tired, struggling nvm to breath and no one seemed to be doing anything. I managed to walk off the ward (not sure how!) and went to the ED -children’s ED where I am a nurse. I needed someone to be my advocate because e nurses here didn’t seem to want to. My lovely colleagues escalated to the site manager and the medical registrar came to review me and said I needed to go back to the ward - that this was not the normal protocol to go back to ED. I tried to say that no one was going to escalate on the ward so I felt I had no choice but no voice, no breath and no energy meant I just went back to the ward. I finally got magnesium at 2 am this morning and I feel so much better now! I’m am trying 6 hourly nebs today and hoping for discharge at the end of the week.
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HoppyNurse
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ARRRGGHHH why do people, doctors usually, not get that no wheeze doesn't mean you're ok and that if you have to wait it can go beyond the point of success?!
Sorry you've had such a rubbish experience. I hope the rest of it is much smoother.
Ugh so frustrating to be so sick and stuck in the hospital over the holidays! And also so so frustrating when doctors and nurses don't know that severe asthmatics often don't wheeze much. I feel you and hope you're holiding up ok and can get home soon!! Take care!
So sorry to hear you have been having such a frustrating time. Is so rubbish when you aren’t being listened to. Do you have an asthma action plan as that can be useful to shove under their noses? Doesn’t always help but can just give you a bit of back up! Best wishes for a speedy recovery x
I have been asking for a care plan with hospital based care from the respiratory nurses, I have my regular action plan and I have all the important medical information on my phone so I can show people. It not the first time it has happened to me, on my 4th admission I became really tight again after getting my neb very late. A junior dr came to review me and told the sister in charge whilst standing behind me that I was faking it and just shallow breathing! The difference is I was on the respiratory ward and they know me well there she was able to advocate for me and escalate to the right person I order for me to get the treatment needed. That dr came and apologised I ne an hour later after reading my notes and said he had never heard of my type of asthma before.
It’s so wrong that they treat us like that! I have been in A&E before when a Reg wanted to escalate to resus and Consultant took a cursory look from a distance and decided sats ok and lips not blue, no wheeze so just breathe better!! Interestingly ended up having to be taken round to resus later and ICU then hovered like vultures! Bearing in mind how many in this group say they don’t wheeze I can’t believe how many clinicians still make us feel like the only person on the planet that fails to manage it 🤷🏼♀️🥺
I was so traumatised by that Consultant not believing me that I put off attending A&E the next time I should have gone and ended up in a much more poorly state.
Certainly helps to have an advocate as we just don’t have the voice or the energy to fight the system.
I also wish nebs were given on a regular basis or we were allowed to self medicate them so they could be done regularly as the situation you faced was sadly all too common 😔 x
It's interesting that in one country it has been decided that patients can be trusted with a nebuliser and in another they are not. In Australia I can buy a nebuliser at the chemist and easily get a prescription from my doctor for the nebules. My doctor of course knows that I have asthma. I haven't used it in over 10 years but I do feel safe knowing that it is in the house and I keep the nebules up to date.
Also, in my state of Queensland, I can go into any chemist and buy a Ventolin medihaler. This was brought in as some people with a severe asthma attack were refused the medihaler from the chemist due to the rules. However not all states brought this in. So, in one state, I can buy it. In another I would need to make an appointment (could be days), get a prescription and then visit the chemist. These decisions are obviously made by boards of doctors and it depends on who is on the board, the experience they have and their philosophy on where patients stand in determining their own health.
In the UK we can buy and use a nebuliser, you just need the meds prescribed by a doctor. I was referring to being in hospital and needing to nebulise. You are at the mercy of the nurses as to when you may receive them. I was on 2 hourly nebs at one point and it could be anything between 2 and 7 hours when I would actually have them. This definitely delayed my recovery whereas at home I can be far better at reading a clock! In just one hospital they were amazing and once the pharmacist had assessed your numptiness level you could self medicate and record it in the chart. Hey presto, quicker recovery and quicker discharge!
Wow 7 hours - that must have felt like forever and waiting after the 2 hours was up and not knowing when they were going to come would have been stressful. I didn't realise it was easy to get a nebuliser in the UK as some members have mentioned that doctors were resistant to them having one at home. Good to know that it is the same there as here.
It shouldn’t be so hit and miss anywhere, but it does appear to be so. I think it depends on what the diagnosis is as to whether they are happy to prescribe nebules or not. For some of us it definitely helps to keep us out of hospital more often than not 👍🏻
That is really scary - and must have been awful both to hear but to realise treatment could be withheld on the basis of the opinion of an ignorant fool. 🤦♀️
I have no issues with my A&E care - I think working there certainly helps - I have access to book in at the back and skip triage etc! It being on a ward that’s not suitable is my biggest issue - I’m in a bay with no nurse based in I don’t feel monitored enough and very vulnerable they do not come in and check very often - I have steriod insomnia so barely sleep - I’m physically and mentally exhausted which doesn’t help! I know the Matron very well and have communicated some of my concerns with him which he was very happy to take on board. Interestingly the nurse from last night said to me hat it was out of her hands and there was nothing she could do. As a nurse I would fight tooth and nail to ensure I get the right care for my patient, obviously a different nursing culture!
The worst thing about having an asthma attack and having to deal with that sort of attitude is that instead of concentrating on your breathing and relaxing, the concentration on breathing is taken away and anxiety levels increase as you realise that you are not getting the help you need. To further exacerbate the situation, you then have to remove the mental energy you are using to keep calm in a desperate situation and use it to speak calmly to a smug individual who is so sure of their diagnosis that they are not really listening to what you have to say. There is also the knowledge that any intensity on your part will make them think that it is an anxiety attack. You really want to scream at them, "I'm dying here. Do something." However, not only will that take up too much oxygen, it also won't change the mind of a close-minded person.
It would be good if that doctor learnt not just that there is silent asthma but that his knowledge base is not perfect and he does need to listen to and think about what patients say.
I'm not the type to "let loose". However I still get a chuckle and feel proud of my sister. I won't go into details but let's just say that the doctor more than deserved it. He had ordered "Nil by Mouth - only morphine" for our mother. With no sleep for 24 hours, she screamed at him, "Well if all you're going to do is kill my mother, then I want an ambulance to take her home." We got the ambulance and Mum did fine at home.
Good Luck. It's good that you have people there who can speak up for you.
This irritates me as they also think that you only get an exacerbation with an infection! Not that you could have come into contact with some sort of allergen that can trigger the asthma and I get the same your sats are good and not wheezy! They then never get in contact with Guys Hospital to liaise with my specialist either!
I totally understand your fustration. I work for the.ambulance service and have just had a stay in hospital. I took ill a few days before christmas and started on my rescue pred and antibiotics. Im constantly on pred but up my dose when I need too as per my asthma action plan. After a few days I didnt really feel better and couldnt work out why. I felt dreadful as after a long debate with myself rang 111. The clinician rang for an ambulance and the crew assessed me. I had a temp of 39.5, high bm upset stomch and difficulty breathing. I was taken to hospital with query sepsis. The staff in A and E were great and after 4 hours I was transfered to an isolation room on a ward as I was flu positive. I was there for 3 days. I had agreed with the respiratory consultatnt that I would probably go home on boxing day if I was 24 hour neb free. On xmas eve at 10pm 2 staff came, threw my stuff onto the bed and said your moving. I asked where too and they said the heart unit. I asked why and they replied because your going home tomorrow. I explained that wasnt right but they were adamant I was for discharge.
The heart unit is a porta cabin attached to the hospital and it is freezing. Initally they tried to put me on the ward but I pointed out that I was infectious so they put me in a room on my own. The nurses weren't happy at me being sent to them and I could hear them complaining to each other. Once on the heart unit I was totally ignored, as were my notes. I was told to use the shared loo despite having an upset stomach. They made me were a mask over my mouth whenever I went to the loo. No one checked my peak flow and forgot to give me my meds. They didnt understand my condition at all. The following day was christmas day and after a night in the cold my chest was worse. I asked what time the doc was coming as all I wanted to do was go home. I was very tearful and upset. One nurse did try to get a doc to come down to see me but no one turned up. By 6pm I was distraught. I was crying my eyes out when a nurse came in and she finally got a doc to come and also the matron after I said I was going to leave. I had a long discussion with them and was eventually persuaded to stay and see a respiratory doc in the morning. After they left they sent in a male nurse who did my obs and then told me from now on I had to use a commode as they had now read my notes and realised I was infectious. I was livid. I told them no one had bothered about infection control for 24 hours so why bother now. In short I rang my husband to collect me and left the hospital in an hysterical state. I was so ill for 3 days afterwards. I am making a complaint to the hosital. It was so scary being in a room on my own without access to even a tv to keep my mind busy. I was right next to the nurses station and could hear every word they said about me.
I am reluctant at best to go to hospital due to the mixed levels or care there but now there isnt a chance in hell I would go back. My next hospital is 60 miles away and Id rather get someone to drive me there.
I feel for anyone who attends hospital and ends up on the wrong ward. All of us should have access to the respiratory units when we have an exacerbation. I understand beds are in short supply but struggling to breath with complex, non text book asthma is a life threatening condition and we should be cared for by a specialist team.
So that my rant over. I hope you're feeling better now.
How absolutely horrible. I also find that cold make the asthma much worse (and is also no good for a chest infection). I also prefer to deal with it at home where I can have the heater on and do what I can to improve. If I have to go to hospital I will but I have kept out of them for many, many, many years.
We have a specialist chest ward in our main city hospital. I used to be a regular inpatient due to regular attacks but once my aspirin allergy was diagnosed and my meds changed I haven't been admitted.
But I know from experience that going straight to the chest ward and not to A&E (the ambulance teams knew to admit straight to the chest ward) that specific treatment was administered and relief was delivered ASAP.
Everyone who worked on the ward knew their stuff. Whether it was cystic fibrosis, asthma or other chest disease, every patient was understood & treated accordingly. I know that doesn't happen on general medical wards - one admission was a living nightmare as A&E got involved & I ended up on a general ward. Didn't matter what I said, I was ignored and my attack lasted 36 hours before the Dr talked to the specialist ward. Once I was transferred my treatment was sorted and I was out of the woods within minutes. That was a frightening experience.
If you're an outpatient of a respiratory clinic maybe you can discuss future admission plans with them to ensure that you get the appropriate admission & treatment? Can they help with locating a specialist ward & making sure you are admitted there rather than going via A&E. Have they got an emergency phone number for such occasions?
Finally, once you're home it maybe time to put your concerns about your bad hospital experience to the PALS team at the hospital. It's a way to raise matters that need addressing. I would suggest to them that in order to save asthma lives their general wards need an automatic system where the specialist Dr team is always consulted upon admission to ensure life saving treatment is given in a timely manner.
In this day & age no one should be experiencing what you have. We have technology to ensure instant access to specialist notes and advice and contact details. Teamwork rather than ignorance is the way forward. And as a patient I'm part of the team!! Rant over.
So to end his disastrous stay in hospital the medical consultant has decided I’m medically fit for discharge, even though I needed nebs this morning and is giving me codine to suppress my cough! I’m far to tired and emotional to put up a fight.
Oh wow- that was not a pleasant read...sorry you had to endure such a horrifying experience! It was lucky that you were (somehow) able to visit your colleague and get them to advocate, I can only begin to imagine had you not had that option.
Glad to hear you finally received the treatment that (you knew that) you needed! Take care and get well soon!
Reading through this and replies makes me cross. I saw a paramedic nurse urgently at our doctors surgery, who said I probably had anxiety. He wouldn't listen to my husband...I don't wheeze I have a fast pulse, GP said in my notes I was to be seen PRN nope he wouldn't listen.
Next day hardly able to breath ended up at A&E with pulse of 160 and chest completely tight. Blood gasses showed I was in respitory failure, Admitted to a respiratory ward.
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Asthma, pneumonia A&E and admission
allergic to benralizumab today started on mepolizumab feeling rough 
Losing my confidence in treatment. 
PLEASE HELP - constant coughing and dry preventers not helping at all
