So ended up at a&e today. Does anyone else have real problems with a&e doctors actually understanding what they need and what works for their asthma?
They think we all fit nicely into a text book but in reality that's not the case.
Oh yes. I had one tell me today that it's probably not asthma and it could all be in my head!!! Seriously a diagnosis of severe asthma is in my head!!! X
yes, I've had two very differing experiences. one where the docs took me very seriously and I received the right treatment and secondly where I was patronised and told it was only a panic attack; apparently I'd been having a panic attack for two days before hospital and it continued for two days afterwards until the steroids kicked in, yes they did end up giving me steroids after fought tooth and nail for them.
So frustrating today. Have been given magnesium as I'm on long term steroids anyway. Then told oh you will be fine now off you go!! Weren't even going to check my peak flow! I've text my asthma nurse. She is not happy about it at all thinks I should still be in. She's going to be having words with a&e on Monday apparently. X
glad you have such a supportive asthma nurse
She's great I have to say. Think every asthmatic needs one. X
Yes - I have been in twice over the last few weeks and neither listened to me or my plan. The first time I had a chest infection and was given antibiotics but refused steroids because there was no wheeze (after 2 nebs). They didn't do a peak glow at all. The next day I was at OOH (it was a weekend) who said I should have insisted on steroids as it is on my plan and I have a diagnosis of severe asthma and a chest infection. 10 days later ended up going back and after a neb the doctor thought I had a PE or heart attack because of the tightness. As he was looking at this, I didn't get a neb again and deteriorated so ended up being admitted. I do appreciate that he was looking at other things but I knew it was all my asthma symptoms and I could have tried a neb while waiting (it did work when I finally got it). Again no one did a peak flow until I saw the resp cons.
So sorry you haven't been well either. Why do they not listen to asthmatics. Especially severe ones who know themselves! Several points last night whilst coughing and struggling I thought I should probably go back in but I haven't because they won't listen and I'll be made to feel I'm wasting their time. X
I feel exactly the same. A have a detailed plan in a letter from a cons about what works well etc and am seen in a difficult asthma clinic. Yet they still don't listen because they expect me to fit in the box.
Just a thought - when I was in a similar position a few weeks ago (a&he Fri night and still no better Sat) I phoned 111 and got an appointment with an OOH GP. Maybe worth a try but if it gets worse definitely go back. I've done this several times and someone usually listens. Hope you are feeling better soon.
Thank you. Yeah I have spoken to my asthma nurse who is fuming and will speak to one of my consultants and the a&e department when she is in tomorrow. She is going to make sure they have a written plan for when I go into a&e so they can stop all this rubbish as to how to treat me. Doctors especially a&e ones hate it when you don't fit in the box. Xx
That sounds great. Take care of yourself today. X
Thank you. You too. X
I have had several bad experiences at A&E. One time, I was so bad I was blacking out, and the doctor said that he couldn't hear a wheeze and the nurse said my peak flow was good (it is usually 630 and was only 450 on this occasion). Another time, I went to out of hours. The doctor there was very concerned and sent me to A&E. The doctor in A&E said I was fine and sent me home telling me to use my Ventolin and spacer as it is "just as good as a nebuliser". The last time I needed A&E, I tried a different hospital. I ended up being admitted, but then the consultant tried to tell me it was anxiety and was all in my head. Fortunately, my GP disagrees. I am that terrified of going to A&E now. I have a consultants appointment on Monday. I just want my lungs sorted out so I don't have to go through this rigmarole any more.
I'm so sorry you have had such bad experiences. It seems with a&e doctors if you are an asthmatic that doesn't tick the box they don't care or know what to do. I am getting my consultant and asthma nurse to write a plan of how to treat me. At least then I have some written protocol they have to follow. X
That's a good idea. I'll have to mention that to my asthma nurse on Monday. x
I expect A&E are fed up of being used as drop in doctors .
I can imagine they are but when you have severe asthma and a letter from consultants to say so then they need to pay attention to what they are being told.
Did you know that 3/4 of all asthma deaths are preventable? Not being able to breathe is a medical emergency as much as any other. After all if you can't breathe then you are dead! A&A are there for medical emergencies which can't wait until the doctors deign to open especially when you have to wait days or even weeks for an appointment.
Maybe your doctors are open 24/7 in which case you are very lucky!
I find with most places hospital, doctors and ooh if I'm not wheezing they don't do anything. wheezing is a late symptom for me so I'm usually really poorly by the time that happens. I've been sent away from docs loads of time with no pred and then ended up In hospital. I now have rescue pred to keep at home which has helped alot
That's what the asthma nurse has said to me. I'm awaiting her call tomorrow. Hopefully will help with everything. X
I have this problem all the time in A&E and I feel the same as a brittle asthmatic who doesn't fit into there nice little boxes. For someone who have been admitted 4 times this year and 12 in the last year this is really frustrating. I meet with my consultant this week who had admitted he no longer knows what to do with me 😭 and is going to speak to a colleague. However I am feeling rubbish the last few days and my GP doesn't reopen until Tuesday so trying to hold out.
Ah sorry to hear your not feeling good. I'm with you on the a&e visits. It's so hard when you don't tick their boxes. I too am holing out to speak to my asthma nurse and consultant tomorrow. I hope they have some answers for you. Xx
When I attended A&E once one of the doctors told me that I didn't have asthma and that I should stop all my asthma medication. The doctor then asked if I had a Respiratory Consultant and when I explained that I was under the care of RBH they soon went quiet.
Honestly it really makes me wonder. X
Sorry to hear you ended up at A&E. Good to hear you have a supportive asthma nurse and hope they can support you. If you are looking for a written plan to help manage your asthma, there's a version on our site bit.ly/2rswbf0
Yes i had the same many times. I have auto immune too so i have a note of what treatment works etc. You could get your dr to write a letter so you can show A&E. I find this helps a lot especially if you are allerhoc to meds. I carry full details of all meds amd my condition. Also carry a letter. Hope this helps.
Yes I had a similar but lesser experience here - in my late forties I am discovering I have high peak flows. So I don't fit the boxes. I did some peak flows here and there in my youth but never paid much attention - my intuition was always they didn't track for me. Only this month did I discover my peak flow is about 800 (maybe even 810) when I'm completely clear. That means scores in the low 600s or 700s I am not having a good time (which is my subjective feeling) even though the chart says average for someone my age/height/weight is 620.
The express care doc that saw me during my initial attack a month back got uninterested when I blew 750 (even though I said I was having an attack!) but I was kind a hyped up and overachieved on that blow. He did have the sense to say people that do a lot of sports can have much higher peak flows, and I have a history of endurance exercise much of my life.
Bottom line is I thought I knew everything about asthma, certainly my asthma, and I'm just discovering this detail 40 years in. I have been inspired by this board to write an asthma action plan and record some of my peak flows just so next time I don't have to have this "I'm being an idiot" feeling when communicating to some random medical person.
It's funny when we all realise this. Yes I am a PE teacher therefore my peak flow can be high around 550. It is a struggle. I keep a peak flow diary on my phone so I have it everywhere I go there is a great app. Xx
I have been away for two weeks stopped the Serevent continuing the qvar ... obviously no pollen there so no asthma. On return I feel a slight tickle sometimes that can be the start yet a few hours ago again I blew 800. I haven't gone to the Ventolin yet so we will see how I do.
You say 550, do you know what is average for your age/height/weight? They told me it is 620-630 average for my numbers.
I am thinking about filling out the asthma action plan card, it has peak flows on there so maybe having it written and signed off by current doctor will help me communicate it in future. I am going to put a note that peak flow does not track well
That's good you were better whilst you were away. I'm not sure on average for my age and height etc. I will look it up though. Due to see St. George's on Monday. Hoping they will have a plan for me if I pitch up at a&e. Xx
I've been lucky with the two A&E visits. First one was via ambulance and I think A&E staff do take notice then, though I have to say the nurses were far more on the ball than the duty doctor who was a lovely girl (yes girl!) who looked like she has just left school!
Second visit was around 5 or 6 weeks ago and I was walk in and dealt with *very* quickly. Up to a special "ward" for those who walk into A&E and are triaged as serious. The nurses and the doctors (who I did have to wait a number of hours to see but I didn't mind that) were good and listened. I mean *listened*. I could barely speak and my husband who was with me isn't good at explaining what I need, so I typed it ALL up plus history of the previous 5 months on my Tablet and simply handed it to whichever medical staff was dealing with me at the time. They were really impressed and said it was very useful. Maybe that is something useful for any of us to do? Keep a diary of symptoms - have a summary page, list medications, etc - keep it up to date and grab it if you need to go to A&E.
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