I apologise for the rant that's about to happen but I'm curious if anyone else has this trouble or if it's just the complacency of the staff in my local A&E.
I tend to bounce in and out of A&E with attacks fairly often, I'm on the maximum meds that I can have inhalors / nebs / tablets and am on Xolair.
I've had a bad chest for a couple of weeks and been on antibiotics and steroids which were starting to make a difference, been off them for a few days and started to take a turn this evening. My GP and respiratory nurse both hound me all the time saying that if I'm getting worse and my nebs aren't lasting and my peakflow drops then I have to go to A&E straight away, no excuses and no arguments.
Anyway tonight I really started to struggle and I'm fairly tired which is when I tend to run into a lot of trouble so tipped up in A&E as instructed / threatened my oxygen SATS were sitting at 89 / 90 and I was really struggling with my breathing. The nurse unhelpfully left me on my own with no nebs / oxygen / doctor for over half an hour. Finally a pretty good doctor came to see me and they got me on nebs and oxygen and gave me hydrocortizone and everything eased a bit. The nurse then came and took the oxygen off which sent my sats from 96 back down to 92 / 93 at which point she turned the monitor off because ""The alarm was annoying""
Unfortunately the good doctor went home and I was left with a bit of an idiot who came back and said my xray wasn't too bad and that my white blood count was high. He said I could go home (by this point both myself and my boyfriend were pretty hacked off with the lack of proper care) I asked him should I go back if my breathing got worse again to which his reply was ""No go and see your GP because they should be dealing with that, that's not what A&E is for"" I can't even begin to explain how angry I am at this treatment, I've had to come home and put myself on the neb because I was struggling again.
I feel like their complacency with dealing with my attacks and this attitude that I shouldn't go to A&E while suffering with an attack is basically playing Russian roulette with my life.
Has anyone else ever had similar experiences or have any idea what I should do?
Again sorry for the rant, just feel so afraid and alone when stuff like this happens and it's the middle of the night. I'll try to get hold of my GP tomorrow and see what she says but I'm worried with the weekend looming that if something happens I'm going to be in some serious trouble.
sorry to hear u have had a pants night, i hope u get better soon and ur boyfriend helps u out lots!!
I cant say i have had it from a and e as they are fantastic in my hossie and jump on me straight away and always tell me that i will be admitted for 24s at least (dont think i have ever stayed for just 24 hours as i usually fet worse again). Also MAU in my hossie are fab! My mum before now has rang a and e to pre warn them that im coming in and they jave everything ready for me...
...My consultant on the other had is a different story, she is getting hacked of with me constantly coming in and is telling me to manage better at home and to get my gp to so sort in daylight hours (little tricky when its a quick onset attack) so im kind of in the same boat but with a different health care professional!!
Massivr hugs for u, hope thinhs get better!! Could u get ur resp team to draw up and incase of emergency letter to stick on the front of ur notes and give u a copy etc so when u rock up in a and e there not so much of a nit wit with u!?!
Xx
Sorry you are having a horrid time at the moment, I hope the lungs are improving. I had a very similar experience last week but with the ambulance service. My drs phoned for an ambulance as I was struggling and it took 2hours to get to me. When I got to hospital they sat me in a waiting area struggling to breath, if my cousin had not been there not sure what would have happened. She was persistent with the nursing staff and then one that has seen me in resus came and helped as by then I was quite unwell. Not sure why us asthmatics have to keep pushing and asking for basic medical help when the A&E team should be on the case. I have everything written down and still struggle to get the help I need sometimes in A&E they are under staffed. I would recommend you write everything down and write a letter to your local PALS that what I do every time it goes wrong.
Sorry to hear that you are not having a good time with a&e. I'm in the same boat as you, and have got so depressed by the treatment by a&e that I fight going in at all costs, not a good idea! Though to be fair not all a&e's are the same some can be really good, I actually wrote a letter of complaint and the very next time treatment was a 1000% better lol. It's a long process but at least you can have a go at them and they should improve.
Hope that helps
I used to have problems with A&E, particularly as my consultant had given me a quite high threshold for getting help. What really helped me was having a letter / plan written from my consultant detailing how I presented, what the action plan was, my meds, that I took to A&E with me. They seemed to take note of this, and generally treatment was a lot better. It shouldn't be the case that they accept a consultant's letter over what a patient is saying, but it has made a difference to me. It might be worth asking your consultant for something similar.
I'm lucky in that my normal local hospital is very good and always treats me and my asthma very seriously, in fact i usually have the opposite problem in that they never let me escape!!
I have however had problems when I've been to other hospitals when visiting other areas of the country and like you have been left struggling/had to demand treatment (well my family has as i havent been able to speak!)
asthma is a very serious condition and you did the right thing going to a & e to get help, despite what they said/did! and i am horrified they told you not to go back if things got worse!
i would definately go and speak to your gp about what happened. is your consultant based at the same hospital as the a & e? as others have said, a letter/written action plan from your resp team will hopefully help in future situations.
i hope things have improved and you can get something sorted!
B x
Hi, thanks for your messages. I'm going to speak with my respiratory nurse when she's in on Monday about getting a letter or plan written up by the consultant that I can take to A&E with me in future. After a lot of trouble today I managed to get an appointment with a half way competent GP (not my normal brilliant one) who confirmed that I've got a fairly aggressive chest infection and promptly bunged me back on antibiotics and upped my preds. Problem is I've been told in no uncertain terms that if things flair up again over the weekend then it's back to A&E for me, not as easy as some doctors think when a. your reluctant anyway and b. you feel like their trying to finish you off with lack of treatment anyway.
Nevermind, here's to hoping for a good nights sleep seeing as how I have to be up for work at 6 tomorrow morning
I have a written protocol with all my meds on, how my asthma behaves and what works when I get to A&E. I have had this for over 15 years now..... a must for any difficult asthmatic
I have a written plan, a list of all my meds for emergencies, an alert system on the computer at A & E. And despite all of this it depends on who is on duty. Come to the conclusion that sometimes you have good experiences in A & E and sometimes you don't, and after 20 odd years of fighting the system can't see it ever changing.
I'm with katina, it depends who's on duty.
Sometimes I've had brilliant treatment and others its like I'm an inconvenience.
Very frustrating when its your life quite literally on the line!!
eeep this is scary. I have not yet been to A&E but have been put off the idea unless I'm desperate due to reactions of other drs, esp. with the 'oh you're not wheezing, your PF is good etc'. I find there's often a disconnect between the 'official advice' such as what AUK says and what you get when you follow it, like 'oh no you don't need to come in' even when you've been at the reliever for ages and it's not helping!
I tend to ring OOH first but they're often not that helpful - the last guy I spoke to on the phone was nice but not that helpful in the end as he was asking me what I wanted to do and I wanted to say 'I don't know, I'm asking you for advice' - then he seemed to say different things which was a bit confusing, esp since he seemed to be saying they couldn't give you a neb at OOH...? thought they could?
I had my first ever Asthma related visits to A & E a couple of weeks ago and share your frustration. I didn't really want to go but had to as I was getting no relief with Salbutamol and was very tight.
Was sat in triage for ages and then waited another hour before seeing the doctor. By the time he listened I'd got no wheeze, but not got much air entry either!!
Once the Dr had actually listened I was treated quickly with Nebs and additional steroids!
Think there is some serious underestimation of Asthma and a lack of realisation that people can look OK even if their lungs are behaving very badly!
hi,
i too have had very similar scary issues in my local A+E and got to the point of being frightened to go inas i was often left for ages without being seen, as everyone elso was a priority!! this happens more if i take myself in rather than ambulance.
in the end i telephoned the A+E matron, whom i happened to know and booked an appointmet to see her, we discussed my issues and things sort of improved, the next visit i had she was around and witnessed for herself my being neglected as there were 3 priority calls coming in!! was told me i should have also been classed as one of those priorities and not left because they knew me.
i have been lucky not to have needed them for a while so have not tested them reciently!! touch wood!!
i would sugest trying a similar route as me, letters didnt really help if you re a very frequent flyer they soon get lost.
good luck g xx
hospital phobia
hi i hope you are are on the mend this time as i find am slowly getting there. this message is a bit long but i'm so frustated by the last trip to a&e. i guess you can see from the subject my expreriences with a & e/ hospital have sometimes been scary to say the least. 8 weeks ago i was very poorly with my asthma i have a brillent gp who will go the extra mile to keep me at home. she had been out as i had increased my prednisalone to 80mg from my 30mg maintenace dose. on sounding me she explained i had a widespread wheeze and bilateral crackles indicating another bout of community aquired pnumonia. i did not want hospital admition. so she talk to my consultant and micro biology and after discussions put me on a high dose of levoflaxin 500mg bd and gave me a injection of steriods. sadly during that night my condition deteriated and my support staff rang an ambelance.i was out of it for a while so i found myself a few hours later in resus where i have been so many times before. i was very lucky to be here as my notes were in a locked room and the dr's treating me did not know me. they told my support worker he was not going resusitate me. my sister was not informed she as fought my corner with dr's in the past not to dnr me explaining when they say do you not think she has suffered enough, no you do not know my sister in between becoming seriously ill i have a life i have family and friends i love making jewellery or seeing all my nieces and nephews and taking them out with my support staff in my wheelchair adapted van this makes me happy. so this in resus i was given medication but left to fight for my life,for 25-30 seconds there was no output from me on the monitors but when they turned me apparently some output returned my sats heart temp were all over the place. i had severe sepsis it is in my med file i suffer with sepsis caused by infections. my protocol i took with me stated this. so what gives dr's that do not know me dnr me. there have been many times before i have been grateful for dr and nurses for saving my life without there fast action to resusitate, ventilate on many occations i would not be here later critical care team were brought in i was ventilated again for 6 days in icu and on day 8 up to the respiritoy ward for 10 days then discharged home. now have it in writing i want to live so please treat me as best they can as i present myself at the time. i do feel vunarable and scared about a hospital i need to basically survive. catch 22 i guess i lot of us feel we are in. apologises for miss spelling and rambling on and on but just postiing this as actually helped as i am sure i am not the only one his has happened to. thank you and kind regards
sharon68 that's awful!
It does go to show though that sometimes the health professionals don't always want to help but want to fit you into a category and make assumptions!
I spoke with my respiratory nurse who's suggested that I launch a complaint with the health board about the treatment that I had in A&E but the problem I find is that I live in such a small rural area that they're going to know it was me and I worry that the treatment will get worse. I find that it's difficult to get people to understand that we find it more of an inconvenience having to bounce in and out of A&E and the doctors etc than they could possibly feel about us being there. None of us ask to have to go through this and certainly none of us enjoy it. I find that with tiredness sometimes being the greatest danger when I'm bad with my chest and the fact that I don't sleep because I get wound up and worried that sometimes part of the reason for tipping up in A&E, even though you've pushed it to the limit before going, is because you want someone else to take responsibility for you for a while so that you can relax and feel a bit better. On these occasions a fight for basic care is the last thing that you've gone looking for.
I'm still feeling pretty horrendous and very tired, can't take any time off work because they're going to discipline me if I have any more time off with my chest. Sometimes having an ""invisible"" illness is incredibly hard. I can't help but think that if we had a visible illness / disability it would be much easier to get support.
Off to see my GP tomorrow because I trust her more than anyone and I know she'll give me good advice!
I feel your pain. Iv given up on the local a and e, as the standard response always was ""well your chest sounds clear so you can't b too bad""! So now I travel an hour or so to my consultants hospital and I have to say they have always been great. I have never had to wait and am usually rushed through. Although that's because I usually hold out on hospital so long I'm in a pretty poor state, not the best suggestion!
They usually listen to what I say and want, but it's difficult as they can be slow to suggest things sometimes. I did have a row with a reg who discharged me once without pred or good antibiotics. I told him I'd end up back in and sure enough two days later I was admitted for 14 days! My consultant was less than impressed when he heard!
The idea that if you don't wheeze you must be alright is what gets my goat. I am going to celebrate the day I'm told I have a wheeze! I think more education needs to be given to doctors and nurses about people who present with alternative asthma symptoms.
Am also scared to go back to A and E after being told congratulations you are a respertetory
now get out of my department ( medic serously lacking in communications skills )
My A and E also belong to the no whezzing no problem thing
very unhelpful.
I also have something more visable. this dosn't result in better care it is just more worse care.
I used to have very variable treatment for my asthma in A&E. The worst admission was when I was told I could only have 1 salbutamol neb every 30 mins on admission. I was like....OMG...I was having back to back nebs at home and getting worse...this isn't going to be good....They didnt listen to me and I ended up in Intensive care due to their lack of care. After this I had my consultant write a protocol with exactly what he want them to do when I am admitted.....back to back nebs, IV hydrocortisone, IV Aminophylline, magnesium etc. This letter was signed by him and in the last 5 years it has been adhered to by the letter!!!! Result.
I was reading somewhere that the outcome from asthma admissions to A&E was far more positive in those patients who were admitted by ambulance. I have to agree with this. I used to try to get a taxi or get my husband to take me if possible as I don't like the 'drama' of an ambulance as it makes me more stressed out. However, I did notice that I get treated faster on arrival at A&E when I have phoned for an ambulance. I will only go via ambulance now.
The respiratory team has mentioned to me a few times that A&E may take things more seriously if I tip up there in an Ambulance, but seeing as I live literally a stones throw from the hospital (I can see it from my bedroom window) then it seems really stupid to cost all that money and literally have to wait longer for an Ambulance to get to me (as it has to come from the other side of town) rather than get myself there. (Though this has backfired on me once when I almost collapsed because I was a little worse than I'd anticipated.... ooooopppppsssss) As you can guess this got me a rather severe telling off from one of the few good nurses at my A&E who's got a soft spot for me, the respiratory therepist, the consultant, my respiratory nurse (when she got hold of me hehe) and a lecture I'd rather forget off my GP.
Seen my GP today who thinks perusing a complaint with the health board is a good idea, I'm still a bit reluctant and to be honest really want to talk to my consultant about it before I do anything, but he's on holiday for a few weeks apparently. The GP went into overbearing fuss mode when making me outright promise that I'll go back to A&E if I get worse seeing as it turns out I've caught mild flu on top of my chest infection...... sigh!
I'm glad I started this thread though, I've been signed up to the website for so long but never used the boards until last week when I was so frustrated. The responses from you all have been fantastic and I don't feel alone any more because you guys understand what I'm going through rather than dismiss or pitty me, so thanks all!
It's good to know that I'm not the only one who's had these experiences and when I mentioned it to my respiratory nurse she was quite shocked at how many people were having the same problems.
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Returning to work after long medical leave, not getting responsibilities back. So frustrated. 
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