Oftentimes us asthmatics get a bad deal with medics, especially in a&e. We may have to fight to be listened to, fight to be treated, or even fight to be diagnosed. There are some appalling doctors out there that can make us feel like a fraud or hypochondriac. Whilst I know there are some incredibly good ones, it’s often the bad ones that stick with us, and do affect how we see things. As a community, it would be great to share our bad experiences, so that if others have something similar they can be reassured that it’s not just them. If you feel like sharing I’d ask you to also share 1 good story, even if it’s just how supportive someone was etc, so this doesn’t just become a negative hole. I feel like we all have had bad experiences, but I’m pretty sure we’ve all had at least 1 good one too. If you don’t want to write the whole story (good or bad), write the phrase that stuck with you! Bonus points if the stories are connected!
So here goes (a relatively common one)
Early in my time as a ‘bad’ asthmatic, I arrived at a&e at 10.30pm, 1hr to see triage, PF at 32%, BP low, sats 93, HR high, rr in lower teens, and I’m falling asleep as they triage. Now most people would see this and go ‘oh that’s asthma’, but because I didn’t have a wheeze at that time I was put down as an anxiety attack (the person before in in the queue was anxiety). I pushed for a neb l, got sat in a side room alone and wasnt checked on as it ran, whilst I struggled to stay awake, to breathe, and when it was finished I was sent back to reception to wait 2.5 hrs to see the minors doc. As I had improved to a whopping 40% he told me to go home, as I only had a ‘mild’ wheeze so there wasn’t anything wrong, I was just anxious. Understandable I told him no, to which he ‘threatened’ with sending me to majors (as minors was shutting) where they would do an ABG and put a cannula in which would HURT. 🙄🙄. I told him that’s what I needed and I wouldn’t go home until I was at least above 50%. He begrudgingly takes me round to sit in the majors chairs and hands me over. Immediately a crit care nurse I knew came over, assessed me, looked and me, my notes, the time, my notes, the time, me and I get asked ‘why the F has it taken them over 4 hours to bring you here?’ Long story short, I don’t remember much of what happened after that other than BTs and lots of meds, but I do VIVIDLY remember that nurse telling off my minors doctor, loudly, in the middle of the corridor, as he tried to go home. Needless to say I think all the docs got educated on asthma that night and I got admitted. I will forever be thankful to Sergio that crit care outreach nurse (who I saw a few times), cause I suspect if I hadn’t have seen him I may have been sent home!
My phrase ‘you’re just anxious!’
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EmmaF91
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What a great idea for a thread Emma. Asthma can make you feel so alone, especially if its new or your not textbook.
I had one experience, where i was triaged as 'anxious' as i had no wheeze and perfect sats ( i compensate for a long time then plummet..) i sat in a n e for 6 hours through the night and begged for a neb. Eventually getting one i improved slightly then was turfed out where i promptly caught pneumonia 🙄
This experience has made me reluctant to seek help, which did me no favours saturday just gone. I had an attack and left it ages, i reluctantly phoned 111 who sent an ambulance. He was amazing, said i was stupid though for not calling earlier 😂 i was so bad they didnt attempt peakflow, and knew my lack of wheeze was through airways so tight. I was bluelighted to a n e where my lactate was so high, i nearly ended up in ICU. Long story short, im still here because i was so worried i wouldn't be believed. Even as an 'experienced' asthmatic i still ask questions and doubt myself because my sats dont drop. Even though the ambulance and a n e was fantastic this time it doesn't erase the bad visits. I was so worried i wasn't that bad i begged 111 not to send an ambulance!
Oh yes! I constantly ask myself ‘am I bad enough now to get treatment?’ due to multiple bad experiences, and have also been told for waiting too long as a consequence. It’s was only the time they started to talk tubing me that I decided it was my life I was playing with in delaying so long so I have hard borders for when I will get help no matter how good I sound/feel, and I just refuse to leave until I’ve had the treatment I need. Very thankful that my new local hosp is (usually) very good with asthma!
I’m sorry to hear that you waited so long to attend, and that you’re back in hospital. I agree that dispatch/paras tend to be great with asthma, understand more and are more likely to listen to the patient too! I had a para once ask me what I usually ended up needing (hydro/mag) and he just said ‘can’t help with the mag, but I’ll give you some hydro now to get the ball rolling!’ They seem to understand my issue tends to be maintenance not reversibility (unless I leave it too late)!
I hope you start to feel better soon, and can fight those thoughts out of your head so you don’t feel like you have to wait as long next time!
Thank you! It is so frustrating that asthma is so variable and presents differently! I think more dr's need proper education rather than playing dr roulette in A n E!
My local hospital and GP are pretty good, however when I had my worst attack I waited before ringing 111, they sent me an ambulance and the paramedics then called for a specialist paramedic who came and travelled with us to the hospital. He gave me IV steroids, nebs and a lot of other stuff. Once I got to hospital everything was a blur and all I know is that I was very poorly with pneumonia and a bad asthma attack the hospital were brilliant and but told me that I would be being admitted, however when change over came a doctor came and listened to my chest (I never wheeze) he checked my sats and said you can go home. My mum argued (she’s asthmatic herself) and tried to tell him what had happened and that I need to stay, but he said she’s perfectly fine to go. I woke up the next morning in a full blown attack and by the time my friend had driven me to the hospital I was on the verge of collapsing. I was white as a sheet and was loosing consciousness, the staff rushed me through and a consultant said who the he’ll told you to go home?. I was so poorly but they manage to get it under control just before they started to think about ICU. I was admitted for 6 days and had to miss my adoptive brothers funeral as I wasn’t well enough to leave. It then took me 3 months to recover fully.
On the other hand I’ve just returned home from another hospital stay after an asthma attack and the consultants were brilliant this time I didn’t once have to explain about me not presenting as a text book asthmatic. I never wheeze, I cough violently and get short of breath, my sats are always near perfect. One consultant actually said to me that she treats the patient not the numbers and I am thankful that I am still here.
It’s mainly me that takes a while to convince myself to get help as I don’t like to bother people and for this I always get told off as by the time I get to hospital I’m in a pretty bad way. I’m glad there are others who present like I do as it confuses me and makes me feel paranoid.
So I go to urgent care and they are fascinated with my heart rate,
Pushing over 120bpm sat in their chairs coughing my ass off... I'm saying its asthma its asthma.. .there telling me it's not because theres no wheeze anyway I was right it was asthma when they got the breathing aprted they where surprised at how hard and fast my heart rate fell.... I had to be persistent which isnt easy in a busy urgent care
I once had a chest infection and used out of hours gp (late night of a wekend) I went in and said to the doctor I'm hopefully going to make this nice and easy... I'm asthmatic I dont wheeze very often I have a chest infection it's always in my left lung in the bottom here and I'm 95% sure it's there now
I cant take amoxicillin so usually get doxycycline and normally prednisolone the dosage depends on the doctor... but I'm not fussy... I just want to go home and feel sorry for myself
He started with the right side examined me and said hmm... your spot on your not wheezing but your left lung is in a bad way how much prednisolone do you normally take I said well some doctors try and give me 30mg for 5 days but I know with asthma its standard to give 40-50mg for 5 days
He wrote me prescriptions for the 40mg and doxycycline and on the way out he said your pretty clued up about your condition why is that?.... my reply
"I've had some great doctors who have given me some great advice and I've had some terrible doctors and the best way for me to stay well is to know what I'm dealing with and how it should be done"... he agreed and we parted ways
I think we’ve all had plenty of issues in a&e and I’ve definitely had my fair share too. But I’ll go for a clinic based one!
After my first admission I had a standard clinic follow up a few months later with one of the asthma specialists. They were off ill so I saw another Dr (my appointment was first thing so it couldn’t be cancelled). Despite the fact that I was still symptomatic pretty regularly, had had a few courses of steroids in between and had been in a&e for nebulisers the weekend before I was discharged and told I was “under control”.
It then took another 7 admissions or so before anyone bothered seeing me in a clinic again!
Which then leads me on to my good story - after all those admissions I saw a consultant on the ward who said it wasn’t good enough, finally put me on extra medication and slotted me into his clinic 2 days later!
I’m still not under control but it was so nice to finally feel listened to and like progress was being made.
Oooh...great idea - I went years thinking i was a freak and invited poor treatment and it was all me! I don't like to think of others having bad experiences, but it does reassure me as well because it measn I think 'oh...so it's probably not me, I wasn't timewasting, that was bad care' - I can see it for others but not for me so much. Sorry in advance for a long one!
So understandably most of the stories focus on A&E here, and as a non-wheezer with decent sats and a peak flow which is a) much higher than predicted and b) doesn't play by the rules, I have definitely had some bad experiences, the worst of which involves being essentially accused of faking it for attention. However, though I've had enough bad experiences that I really, really hate going to A&E and will leave it a bit too long because otherwise I feel like I won't get treated, I have found A&E on balance actually better than the specialists as they often seem more able to look at how I am rather than how the theoretical asthmatic 'ought' to be. I was also lucky to have good GPs when all this was first kicking off, so don't have *too* many bad GP stories (always one or two - it's not you if you have one). I even met an out of hours GP who called me a week after my first ever admission (he'd sent me in) to ask how I was!!
My worst experiences overall have been with the C word: Consultants/Clinic, so thought I'd add that for variety (not all of them, I'll make myself sound nuts and no one else will want to go to clinic either). I actually have a full on phobia now, and still feel like there's a consultant lodged in my head saying 'why on earth do you think you would need hospital? You're just overreacting and so are A&E' (yes, I did get this message loud and clear for real). Thankfully I got to see a health psychologist as part of the team at my tertiary asthma clinic and about 99% of it was me talking about how I have a massive complex about clinic and clinic letters. I did find it helpful that when I told her about a selected couple of 'bad' experiences her first reaction was 'that's outrageous, did you report them to PALS?' It was so nice hearing someone confirm that actually this was poor care, not just me being demanding and unreasonable.
I think my worst recent experience in clinic was with a consultant who was respiratory but more interested in smoking related diseases. I often find that 'general' respiratory doctors can be scarily ignorant about asthma - at least 2 have told me you have to wheeze to have asthma and silent chest isn't a thing. Asthma 'experts' aren't immune (a shout out to the one who told me never to get help with PF above 50% because I must be fine.), but general respiratory tend to be more prone to it - so if you're in a general respiratory clinic and your cons seems not to know about asthma, be out of date, and you're not getting anywhere? Probably them, not you.
This consultant had asthma herself (she mentioned this at least once per appt. If you have asthma you don't need to know any science about it people! You magically know all there is to know about asthma, of every type and severity.) I call her Umbridge, because she came to remind me of a cross between Prof Umbridge from Harry Potter and Regina George from Mean Girls. I thought she was nice at first then she progressively chipped away at my head. My admissions were me and A&E panicking and weren't necessary. I had mild asthma with one trigger. I was just panicking (I told her over and over I was pretty calm during attacks but she told me I was panicking and she knew it. 2 appts later 'no one says you're panicking'. ) She sent me to physio (they all do - it can be useful but not a magic fix like they think) but proceeded to ignore everything the physio, who was really good, told her - bad cons always seemed to send me to physio, expect me to be fixed then blame me for not trying when all they can do is fix a few bad habits.
After too many appts with this cons I decided to quit clinic entirely on the basis that I couldn't take it any more, was probably a fraud and would rather go to A&E than ever go to clinic again. The nail in the coffin was being told that I was going to hospital for attention and needed to see a psychologist about it, and that I was emotionally dependent on steroids and was essentially trying to damage myself on purpose by taking them when I didn't need to (regardless of who gave them to me).
I had a nice few happy months without any clinic or clinic letters, but sadly it wasn't sustainable and my GP made it clear I wasn't someone to be managed solely by them. Thankfully I got in to see an absolutely lovely consultant (same clinic as Umbridge, could not be more different) who really listened and believed me and didn't mind how many stupid questions I asked. He was the only one who had ever seen me in hosp after an attack and he was so nice then too. Sadly even though he knew more about asthma than many 'experts' I had met, he wanted to refer me to a tertiary centre because he felt I needed more expertise than he could provide (dammit...so good and also almost too humble). I was never scared of seeing him and was amazed I could go to clinic and not be an emotional wreck for days!! His letters were fine too. I wrote him a thank you note when I finally stopped seeing him - he clearly thought I was going to bolt and kept going with me well after I'd started seeing the tertiary cons (nice cons parting words were always 'don't forget to make another appt with me...).
Also a shout out to the NON-asthma respiratory team at my local at last admission, who actually listened to me about how I was and when I'd be good to go. I've had some bad experiences being chucked out too early by medics who think they know best and don't think being able to walk to the bathroom is necessary, so it was lovely to have this team who were nice, polite and very practical clinicians who really seemed to treat the patient in front of them and listen to me. They also got a card, including the F1 who impressively noticed some subtle signs that even senior resp cons have missed in me.
oops sorry for the essay...been doing all this way too long hehe.
I think my memorable phrase was from a medic was “all asthmatics get a bit of a wheeze now and then”. I had a resting pulse of 124, a letter from the hospital saying my asthma control was rubbish, I was gasping and in floods of tears. I’ve had asthma all my life I know what “a bit of a wheeze” is. It certainly does not keep me up for 2 weeks, make me cry, give me a temperature of 38C or send my pulse supersonic. The most positive has been with the asthma nurses at the Asthma UK. I was so desperate for help. The lady I spoke to was so lovely and understanding, I cried. She told me not to be fobbed off by my GP and stand my ground. I was probably very aggressive with my doctor but i’d had enough of being told “you just had a panic attack” “it’s anxiety” “your peak flow is fine” . I always rant about peak flow. I wish a GP would say “yes, your peak flow is ok but your obviously having breathing difficulties so let’s investigate further” not “peak flow ok, your just stressed” then ignore the problem. I’ve suffered from stress, I know what it feels like. I don’t go to my GP very often, I am dragged in kicking and screaming. If they think I am going because “I have a bit of a wheeze” what do they think I have been doing with my salbutamol inhaler at home for the last 25 years. Asthma, no matter how it effects you is SERIOUS, it KILLS! And everyone deserves to have their problems fully investigated. Rant over
My sister, after 24 hours of no sleep, yelled at one particularly arrogant doctor. Long story short - My Mum had Alzheimer's. After going to emergency this particular doctor wouldn't give her a drip and put her on Nil by Mouth. My sister asked him to put her back on the drip (which had accidentally come out in a move and had just been put there by the night doctor in A&E). He refused and she had had enough and yelled (loudly) "Well if all you're going to do is kill my mother, then I am going to take her home NOW".
Previously we were told that an ambulance wouldn't be available to take her home for 24 hours (She couldn't walk). We got an ambulance in two hours. We got her home and she was fine.
A wait of 24 hours/ Nil By Mouth/and an offer to give her morphine even when she wasn't in pain. It wasn't difficult to see where that was going.
I wish I'd been there to hear her - and I'm so glad she did.
My local A&E and respiratory teams are fantastic but there is a serious lack of understanding when it comes to critical care of difficult asthma in my experience. I have been intubated twice but I am normally controlled at end stages with ketamine. The team in ITU fail to appreciate the bronchodilating affect of this drug and put it down to anti anxiety... The intubations have been uneventful as they required low pressure to keep me under - it is beyond frustrating that they now draw some kind of behavioural conclusion from this! Fighting to breathe is hard enough, but fighting to receive correct and efficient treatment is just awful.
It is so frustrating how general practitioners and emergency room / clinic doctors know so little about a disease that affects 400 million people around the world (basically one in fifteen!) My asthma rarely presents with a wheeze so doctors are constantly convinced it’s something else. I’ve learned recently that severe asthma often manifests more in the small airways—there is much less of a wheeze factor there. So you can be really struggling but have a normal-ish peak flow and no wheezing. It’s also hard for medicine drops to reach the tiny airways especially when they’re irritated which makes the attack continue to worsen.
This point you make about wheeze not being able to exist in the small airways. And of severe asthma often manifesting there.. can you give me any references / explaining sources for this?
My daughter has asthma that never comes with a wheeze and doctors - A and E / GP - look at me as if I have two heads every time I say she rarely ever wheezes, even when her SATs are already on the floor. There are a few notable and noble exceptions to doctors not getting this, of course. Some doctors understand it right away - maybe they’ve read what you’ve read.
I've been trying to find an article that sums up what my doctors have told me in the past but I can't seem to find any. I have seen dozens of pulmonologists in my life and spent a week at the Mayo clinic once and I'd say only 3-4 doctors have known and acknowledged that you can have severe asthma and not wheeze very much (I wheeze on forced exhilations but that's about it). I have normal peak flow readings even when I'm yawning and struggling for full breaths constantly in a bad attack. Dr. Sally Wenzel in Pittsburgh does a lot of interesting research on how severe asthma often manifests in small airways-
You know your daughter and her symptoms so all you can continue to do is steel yourself and be her advocate. I'm amazed by how often doctors don't know much about asthma and how often their suggestions / advice / expertise contradicts one another. Your daughter is lucky to have you looking out for her!!
My condition isn’t as dramatic as most of the above. Mostly I get taken very seriously, possibly because I am down as very late onset indeed (age 65, though I think the signs were there since my early days. Also my father died from it age 29, so it is certainly in the family.) But I had my unhelpful moment last Christmas. I developed a cough and a temperature just in time for the festive season, so I increased my inhalers, got the family to do more of the cooking and got through til Boxing Day. That day I went to out of hours, but I wasn’t gasping, though my pf was low. But the on call GP heard no crackles and no wheezes, so I was advised to increase my salbutamol, but nothing else. 3 days later I was back and by now one lobe had gone silent. So my phrase is “No crackles, no wheezes, no problem”.
(This contrasts with my latest episode when I spoke to the out of hours on a Sunday night, but was deemed not to need anything as I wasn’t gasping. The following morning I saw a gp, who panicked when she saw my BP, pf, pulse rate and oxygen saturation rate combo, and quite literally waved her arms in the air and told us to be quiet until she had checked in some manual whether I needed to be sent to hospital or not. The manual decided I didn’t. But I did get all the stuff I needed, and then I could go home to do my own panicking surrounded by my home comforts.)
I’d like to give a big hug and thanks to Dr S from my practice for facing and looking at me as I told him how ill I was feeling. He looked me in the eye, completed a thorough examination, prescribed the correct meds and chased up a consultant appointment.
The other Drs in the same practice steadfastly stare at their computers as I explain my symptoms and rarely prescribe prednisolone without my having to ask for it.
I know how you feel. I have had many of these experiences. I think the one that made me the most upset was a few years ago. I had an attack so decided to go to A&E. I had had a bad experience at our local A&E so decided to go to the University hospital a bit further away. A&E was brilliant and I was admitted. It was a weekend though. I finally saw a consultant on Monday morning. The consultant announced that I didn't have asthma and it was just anxiety. Considering that I was diagnosed with asthma when I was two years old, this came as a bit of a shock. I ended up being discharged back home the next day. The elderly ladies on my ward were concerned about me and couldn't understand why I was being discharged. I had had a spell after one test and nearly passed out. I think the consultant though I was faking it. When I got in to see my GP, he told me that that consultant was rubbish. Fortunately by then the steroids had finally kicked in. It still took me weeks to recover. I don't think the doctors realise though the effect on our mental health. By constantly telling us that we are overreacting and that we aren't as bad as we say we are, it is making us doubt our own experiences. This can lead to death as someone could decide not to seek help when in fact it's vital that they do. For instance, right now I am sitting here with chest pain. The GP says it's just my lungs. I keep thinking, how bad does it have to be before I do something about it. I shouldn't have to feel like this.
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