I have just got home after an admission for 24 hrs to a nd e and AAU . It was the most frustrating and poor experience I have ever had.It was in the hospital which I work in as a nurse. I now am terrified to go for help. I have cough variant asthma and was initially triaged to GP who said I needed A and E for nebuliser and it took hours before I was re-seen and given the nebuliser before being put to AAU because my heart rate and blood pressure were too high.
Because I present with cough and rarely wheeze I felt like they immediately dismissed me and I had horrific chest pain because my chest was so tight. After the nebuliser they heard wheeze. My peak flow was completed once and I was sent home with more steroids after 24 hrs in (a and e/AAU).
I was not given any paracetamol despite asking on multiple occasions. No further nebulisers and no peak flows after treatment.
the doctor I saw in AAU was not respiratory and no attempt to as made to talk to my specialist team
I just wanted to share with people who might understand my situation .
I have battled for years to get my asthma better and am under specialist care for poor control despite multiple preventers.
I should add I had already had steroids and they weren’t doing the job as usual. This was my first course of steroids since I had covid in March.
I literally now do not feel safe. My sats were ok when checked but my heart rate was 156 and blood pressure was 212/130.
Despite having such a high heart rate with pain I wasn’t monitored.
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Pippin100
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Hi Pippin, sorry you had such a terrible experience 😣 I'm no medic but letting you go with that BP and HR is a bit alarming! Mayhe worth flagging to PALS when you feel up to it?
Is your GP and/or specialist team helpful? Can you contact them asap and let them know the situation? How do you feel now?
I totally get not wanting to go back after that, I've had similar experiences. But obviously please do go back if you need to (I know easy for me to say). If you're able to go to a different hospital if you don't feel ready to go back there then do what you need to - equally if you did need to go to that one again then maybe they will register that you shouldn't have been sent home yet.
Maybe also worth calling the asthma nurses here: 0300 222 5800 M-F 9-5 or WhatsApp - 07378 606728.
thanks for reply and good advice -just moved house so new GP who I saw last week and seemed nice. It’s just exhausting to have to almost justify yourself all the time and I wouldn’t go to an and e unless I really needed to and have tried every possible thing to manage myself. It’s also hard to trust yourself after being through that and because I was so out of breath and on my own I literally couldn’t speak for myself. Last time I was in an and e was before I had my little girl and so husband could always advocate on my behalf, but he had to take care of her and we didn’t have anyone nearby who could help.
Believe me I know way too well how it feels especially including not being able to trust yourself and feeling you have to justify everything!
I hope GP is helpful and sees you asap - hard I know but you may need to push if they try to see you in 2 weeks! If you're shattered and doubting yourself perhaps your husband can help - I often find it easier to be assertive for someone else.
Hope you feel better soon and get the treatment you need!
Someone else on here suggested that you write a summary of your asthma, medication, any espisodes dates, symptoms, useful information to take with you in an emergency. Obviously do it when you are well.
I have multiple health issues and always take a summary with me when I visit any new doctor, go to the A and E etc. Most doctors are grateful for it and take it away with them. Mind you I never know where it ends up and as seem to need to take a copy each time I see a new doctor! I don't wheeze either. Fortunately my husband comes with me so I feel for you being on your own. I have found Asthma UK nurses really helpful. xx
Oh that may have been me! Or someone else did but I agreed that it's really helpful. I'm going to be lazy and copy the substance of my reply on that post here. Actually, I might make a new post as well about this so people can find/save it if they want to.
I've used a summary and got results - it's not perfect, and if they're really stubborn they won't look at it or will assume anything a patient writes is useless and wasting their time (I've had that attitude at times). But I've found more often than not it can be helpful. I once had a doctor nearly send me home from A&E before an admission where I landed in HDU! She was very conventional and peak flow focused, but just open-minded enough to read my summary. In the end she found she couldn't ignore where I said that I often responded initially and then dropped again worse. Without that I would have been going home, as my peak flow wasn't too bad and it seemed to be all she cared about to start with.
I had a passport my trust created, but I preferred to create my own in the end as it is easier to update and to tailor to me specifically. I often adjust it based on comments/how it's received eg what did they find helpful, did anything lead to misunderstandings, was there anything they focused on that wasn't on there? I originally created it to answer all the questions they ask you when you can't talk, but then found it actually helped them to accept that my presentation was not typical but was still asthma.
It's formatted like my CV aka bullets. I keep it to 2 sides, and it's printed, partly because my handwriting is awful and partly because it looks more official and that helps them take it seriously. I now hand it over very early (paramedics or triage nurse), and keep extra copies on me as it can vanish.
It includes:
- basic details about me and my asthma, name, DOB, GP.
-Previous admissions in the last year, my best peak flow, the fact I'm under a severe asthma clinic, no intubation/ITU but yes to HDU, the fact that asthma is proven, my adrenal insufficiency when I had it
-summary of my typical presentation, including the fact that I don't typically wheeze, my peak flow is high and may be over 50% predicted, and that I may improve a little with nebs then drop. I will happily use bold and other highlighters for key points
- At the bottom of the first page - NOT the top, I will list all my medication. I don't do it at the top because I want them to look at the rest of it, not look at the meds and ignore the rest.
- 2nd page has 'what's previously worked in attacks', triggers, and when discharge is usually fine for me (NB the ward doctors tend to ignore the document, so it's not that useful beyond A&E sadly - it would be if they read it though!) I also included a section on other conditions and what I do for a living, only because they always ask me that when I can't talk and my job requires explanation!
- At the bottom is a section with blanks that I will write on for every attack - it says when the symptoms started, what I think triggered them, what I've done at home
EmmaF91 has made a template similar to mine that she'll send you if you ask - here's the post about it: healthunlocked.com/asthmalu...
What a horrible & unacceptable experience. I would definitely urge you to share your experience and fears with PALs in order for improvements to be made. As you said in your post, you know what should have happened with your care and that asthma can be a dangerous condition if under treated, but everything sounded substandard and unsafe. I don't discount that staff were stretched, BUT there were too many unacceptable decisions in your emergency treatment.
I hope you make a full recovery and you're able to use your fears to affect change. All the best.
What a damning indictment from a nurse that worked in same hospital! That’s appalling,especially when you knew what treatment you needed.Think we all recognise what a mess NHS is in but surely you should have been treated better as one of its workers too! Hope you get help you need and soon. X
thanks for all your replies - I have made a plan with GP and will raise the concerns via our freedom to speak up - I am so disappointed in lack of care. It’s the kind of thing that makes you question everything.
what a frightening experience and it’s left you feeling very vulnerable. I wonder if you would consider speaking to the asthma nurses here? Together you could come up with a plan should you find yourself in a similar situation in the future? If you have something written down succinctly and clearly it might help you and A&E?
hi i'm afraid youre not alone in your experience of a terrible treatment via A&E. In 2019 i was admitted to resus via GP and all the usual treatment given. Was in resus and due to be reviewed by ITU team. After 6 hours on nebs iv magnesium etc etc before the ITU team saw me another doctor discharged me on 10 puffs ventolin 4 hourly using the excuse "we have very sick patients on our wards and we don't want to spread whatever you've got around!!!". I was absolutly appauled. So was my GP who i saw the very next day and my resp. Con a month after that. It made me very nervous to seek treatment via hospital after that. Also a very similar thing happened in 2021. Same symptoms etc only this time the A&E docs said "our wards are full of covid patients so unless you actually go into respiratory arrest we won't admit you" i asked about parameters for admitting asthmatic patients and he said "thats all changed now!"!! Once again i was shocked and appauled and very angry. Its not like we enjoy having asthma attacks for goodness sake. Now i just struggle on with severe asthma at home very high doses of all meds etc. Seeing cons when i can as for GP his only option when i'm bad is to call ambo and start the whole process again. I have severe asthma with all the usual meds plus injections. I empathise with you
Have to say I completely agree with you! Im sure that most asthmatics have had this scenario play out with conflicting messages from the experts regarding when/if to present to A&E.
My hospital team and GP say go to hospital… (because I never willingly do..)and my local hospital say we can’t admit you as we have no beds - so go home and carry on nebbing!! And so the cycle begins again and we are stuck in the middle of being told to present to hospital and then being sent back home, too poorly to argue!
I am lucky that I have a nebuliser at home, which the medical professionals hate, but the way things are at the moment I would never give it up as it’s the only thing that keeps me going sometimes!
It’s really dreadful that asthmatics feel scared to go and seek help. For me the thought of not getting the treatment that I need when struggling (despite following my AAP/GP/Cons advice) just makes a mockery of the whole system. I wonder why then medics/professionals are so surprised by the shocking numbers of asthma patients that die in this country, before seeking emergency medical help!
Sorry for a bit of a rant! But wanted you to know, you are not alone.. unfortunately I can’t see this situation changing anytime soon so can’t offer any advice.
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