Hi. This is my first time posting. I recently had a severe attack which resulted in 2 admissions in very quick succession. On my second admission my asthma worsened to the point that I needed ITU care and intubation. During my time in A&E all the doctors were concerned about was my O2 sats. I tried to tell them that I maintain my sats for a long while then they plummet, which is exactly what happened. The fact that I had a respiratory rate of 44, was using every accessory muscle and was unable to speak did not seem to concern them.
Since being discharged I have really struggled emotionally with how severe this episode was and that the initial drs did not seem to take things seriously.
I work in the hospital I was treated in and colleagues have since told me that they didn't think I would pull through. This is talky messing with my head.
Has anyone else had a similar experience in A&E?
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PurpleODP
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I have had mixed experiences with A and E, some doctors do not get asthma and do not understand that by the time oxygen levels plummet you are in real trouble, they also want you to wheeze as well, which I do not.
I have been put in a corner of a and e and ignored until my asthma is really bad, I have been asked to walk to an Ecg machine and collapsed.
So what you experienced does happen unfortunately, so how do you stop it reoccurring?
The key for me I have found is having something to give the a and e medics so they know what they are dealing with. So I keep my latest consultant letter in my wallet.
On a much more positive line, my last time in a and e, I gave them my consultants letter, and they just put me straight in front of the doctors desk, which was lovely. The junior doctor, once I had my speech back, asked me how I should be treated, wrote it down and got it approved by her boss, superb.
So I personally would ask your medic to write something for you re your condition, suitable to give a and e, on admission.
Re the emotional side, ring the asthma UK helpline on 0300 2225800, office hours. A nurse there will just talk it all through with you, no time limit. Do the asthma UK mindfulness course, details on their website.
I agree that having something to give to the staff in a and e helps. You can prepare ahead what you would want them to know. I always carry a note on me of my allergies e.g. allergic to penicillin and other antibiotics, and certain substances. I have a summary of my health issues and can take that as well and my husband knows where he can get a copy to bring in.
I did go to hospital with an asthma attack before I was diagnosed and they were almost just waiting to see if it settled down, which it did, and was then told to see GP, But I can understand how frightening it is when you are so poorly as I had a similar experience with blocked bowel which started turning septic. It took them more than 24 hours to rush me to surgery in the middle of the night. It was very frightening for my poor husband and I missed my son's wedding and spent two days in Intensive Care. It happened again two years later, but I was prepared that time and they admitted me quite quickly.
Talking about your experience does help and being prepared for anything similar happening. Having a summary of relevant information to give the staff will help because there is always a large number of staff dealing with a huge variety of patients.
Hope you are ok My experience is similar. I remember my first A&E when self presenting which involved 5 hours waiting in the major unit for me to crash before being taken to the resuscitation unit. All the while asking for an arterial cannula to carry out ABG and pH monitoring ( I know that I will end up with respiratory acidosis). The junior doctors believed I had a physical blockage but I knew it to be chemical. The second time I went into coma so have no idea but my wife was asking the same question. sats were between 88 and 92 so not bad enough. Summary they don't like being told. I still await a consultant later explaining the procedure to follow in A&E. I have severe eosinophilic asthma.
homely2 has given excellent advice. I just want to add that you need a lot of patience with yourself as you recover. It will take time and you and those around you have to give you that time. So take it easy and don't push yourself. Rest and relax. Best wishes to you.
Sorry to hear that this was your experience. Must be terrifying. this happened to my 3 year old son he had a life threatening attack and was on ICU. Before things got worse I felt like I was not listened to and could see that he was deteriorating and working hard to breathe but there was no sense of urgency . He had viral induced asthma so cold flu triggers it. Later found out it was double pneumonia which made it so bad!
Do take this up with the hospital complaints system . It definitely has affected my mental health seeing my son suffer .
Do reach out to your gp for any mental health support or counselling .
I'm sorry your experience with A&E was so traumatic and can understand why you've been left feeling so fragile. I agree with Homely2's excellent advice and just want to say that the Asthma UK nurses are brilliant, so please do call them. Getting a "how to treat my asthma" flow chart, or similar, for presentation at A&E is something we should all be pursuing. asthmaandlung.org.uk/condit...
I've had various experiences with A&E and not all visits with asthma. This is just an observation, but the staff appear to be desensitised to people's trauma, whatever the cause, and asthma is no different (to them). I stress this is my experience and maybe this comes across as a sweeping generalisation. On 2 occasions the experience has been excellent, but neither were asthma related and they've definitely saved my life. However, it takes longer to mentally recover than it does to physically recover at times. I tell myself that's normal and that the fragile feelings will fade in time, but in the meantime to treat them with respect.
One only has to Google "asthma deaths UK" to see repeated reports and coroner cases all conclude that the UK has one of the worst records in Europe for preventable asthma deaths and near death events, and the general consensus is that asthma just isn't being taken seriously enough, there's little coordination and every attack of asthma is treated as a one off event, rather than the red flag of a patient that is now being seriously under treated.
I've shared this article many times, but if we don't complain, things won't improve. My niece works in PALS at my local hospital and she doesn't understand why more people don't complain when things aren't as they should be, as she sees that complaining makes a difference. theguardian.com/healthcare-...
It is difficult to advocate for ourselves, but we can't afford to be shy about poor service and treatment. Wishing you a good recovery and I hope your treatment improves.
Thank you for that link Poobah, I shall send it to same daughter who is currently having issues with help/support for 13 yr old (recently dx with Ehlers Danlos, POTS and something called Mast-Cell-Activaion. On an A&E trip very recently and after 5 hours sitting still in waiting room the doctor pronounced her as fine, nothing wrong except 'brain body disassociation'. My daughter tried to explain that she'd come in with blue lips and hardly had the energy to walk 5 hours ago and had been sent home with blue lips & unable to stand (for the 3rd time). Doc pointedly wouldn't speak to my daughter, only to my granddaughter. My daughter is having to be very strong, she thinks the doc was suspicious of her perhaps suspecting Munchhausen by proxy. Halfway to the carpark g'daughter had to be carried. . .Sorry for droning on (CFS/ brain fog) , it's all a bit scary. Young D.... was has since been dx with a heart/vascular defect by cardiac consultant (due to fast referral by their excellent GP in Bucks).
That's dreadful! Thank goodness for that GP. I've read too many stories of patients being fobbed off, and your granddaughter's case certainly needs a letter of complaint now that she has a diagnosis, if only so that A&E doctor is presented with the fact they made a very bad clinical decision that could have been extremely precarious for the patient. I hope your granddaughter does well with her treatment. 🤗
Just to say that I agree wholeheartedly with itswonderful above and others above. You had a horrible, scary experience in A&E and do need to look after yourself, lots of tlc.
In 2009, such a long time ago but it has stuck with me so even though I've a courageous intrepid personality I still have great fear of ever returning for an emergency.
I'd been blue lighted after coming to in my bedroom with 4 paramedics. They were lovely, I was completely dehydrated, meds prescribed by GP for pleurisy and pneumonia had given me gastro-enteritis, for over 24 hours I'd not been able to keep anything down including abs & painkillers, very high fever & v low sats. (Thank god for my dog who'd been yelping for ages & alerted neighbour). The crew took me straight through to the emergency department at Kingston Hospital and waited with me having had IV fluid in the ambulance. They had another emergency call & needed their trolley but were told by staff to take me through to waiting room. They put me by the automatic doors, a winter coat over my nightie, no shoes, bag, purse or phone on a freezing November night. Of course I hadn't been registered at the desk so staff took no notice. I must have looked like a drunken vagrant.
I probably would have died in the heap under my big coat but for my daughter appearing at 4am, reading the riot act & demanding blankets & help.
I've been a few times with fractures since but of course able to speak & explain everything for myself. Being vulnerable, helpless, without the power of speech is one of the most awful loneliest things to happen to a person. It really is traumatising however I'm sure it's a rare occurrence and I'm going to have to change my mindset & be prepared as Homely suggests.
I really feel for asthmatics with more severe or complicated issues than I and anyone without the knowledge to understand the necessity of speaking for ones self or loved ones.
Your post has alerted me (and I'm sure others) to carrying a list of name, D.O.B, nhs number, ailments and medications. Thank you and wishing you the very best.
I had a severe asthma attack last year my oxygen levels where to at 44 and the hospital told my daughter they could nit bring them back up .so I ended up being taken to another hospital and placed on ecmo I was in a coma for a month 6 weeks in hospital including physio and a tracheotomy. I'm still recovering from this a year on due to ptsd brought on by this All this could of been avoided as I waited so long for my medication to arrive for 2 weeks prior to this as the Dr decided to change my medication which nearly took my life and when I went for asthma review few weeks ago was told my asthma wasn't in control .But it was prior to waiting so long for my medication from them .nearly took my life due to this I've been of work a year because of the ptsd trauma flash backs from the hallucinations .hospitals where brilliant it was my drs and his habit of keeping. Prescriptions on his desk so long that nearly took my life I will never be mentally over this and dread another asthma attack .Well wishes to you asthma is so misunderstood 💔
Hi and welcome Purple ODP. I'm so sorry to hear that, it sounds like an absolutely horrific experience. I've never been intubated but I have had a lot of times where I was ignored and dismissed because of 'ok sats no wheeze' etc. And even sent home really struggling only to bounce back. And some scary attacks even if they didn't end up quite at that point.
Just the intubation would be scary, but the part where you were ignored due to misconceptions about sats and that led to intubation, plus the no doubt well meant but still perhaps not the most helpful comments from colleagues, I can appreciate would really add to emotional struggle afterwards - it's a lot!
I'm not surprised you're struggling emotionally, and would definitely agree with the suggestions to be kind to yourself and see what support you can get with this - don't assume you should have to struggle alone.
It sounds as if this isn't your first attack or admission since you know your pattern? Are you under a secondary or tertiary care centre, and do they have a psychologist attached? If so, I would ask to see them. If not then a sympathetic GP may be able to help guide you.
I'm not any kind of mental health professional and obviously can't diagnose but from mine and others' experiences, you do need to be looking for someone who can support with trauma (something I had no idea was relevant to me at all for years in relation to my medical experiences).
I also agree with Poobah that when you feel up to it, you should report to PALS (and I appreciate that it will not be easy to do emotionally so don't feel bad if it takes you a little time to be ready).
In this particular case, I would be asking for doctors to have better training on asthma, and for them to be told just what happened to you with your 'ok sats' they didn't take seriously. Not to rub their face in it or make them feel bad about it, but so they don't do it again and they know that ok sats doesn't mean everything is ok asthma-wise. They really need to learn that they should pay attention to the whole patient and other signs and stop being overconfident. And to LISTEN to patients with experience of their own condition when they say what will happen!
I also agree with Homely2 that it would be good to have something to give in A&E showing how you present. As a non-wheezer who maintains sats and peak flow for ages, I ended up writing my own and refining it. You could put something together yourself when you feel ready and discuss it with your asthma nurse, GP or consultant if they're helpful. I find it does help - a peak flow obsessed doctor who nearly sent me home because she thought I was fine paid attention to what I wrote about briefly seeming to improve before getting worse. I ended up in HDU instead.
Please do look after yourself - and we're here for support too!
As someone who has had a lot of vocal training, I can speak phrases and sentences with hardly any airflow. This means the usual asthma triage stuff does not work on me and I seem better than I am until I’m almost in respiratory arrest. I can also maintain good sats until I really can’t, like you describe.
Many times I have had emergency department doctors (even respiratory registrars) refuse to believe me that I am as bad as I am. Once I ended up intubated after some ignorant doctor forced me to blow a spirometry test to prove that I was ok to go home, refusing to believe me when I said it was a really bad idea🙄 I have also been refused oral steroids when I clearly needed them, resulting in unnecessary deterioration and ICU admissions. Thankfully I am doing a lot better now on monoclonal antibodies. I hope I never have to go back to the merry-go-round of all that.
I’m sorry you have to deal with it and I’m glad you pulled through. Best wishes for future health xx
I've not needed A&E since I was diagnosed, but had multiple appalling experiences there pre-diagnosis, and in every single one of these, asthma was dismissed as a possible cause because I "wasn't wheezing so it couldn't be asthma"! I find the level of ignorance about such a common condition is quite horrifying. I know medics can't be experts on every single condition out there, but surely they should know a few basic facts about such a wide-spread and potentially life-threatening condition!
I wonder if Asthma and Lung UK would consider doing something to educate medics and the general public about this. There is so much ignorance regarding Asthma and Severe Asthma even with paramedics. I recently had to call an ambulance and they sent out a first responder who was more interested in whether I was having a heart attack. He also suggested that I was going down with a chest infection which I definitely wasn't. He didn't give me a nebuliser despite the fact that I could hardly talk. Fortunately I have my own (Consultant approved for emergencies) so I had to use my own nebuliser whilst he was there. He looked surprised after I improved having taken the neb. This level of ignorance is dangerous for patients.
It would be brilliant if they could. I wonder how many people die because GPs and paramedics write off asthma attacks as 'anxiety' or 'a bad chest infection'. A scary number don't even have the knowledge that could be gained from 5 minutes reading the asthma page on the NHS website!
Does anyone know who at Asthma and Lung UK to contact with regards to this?
It's extremely frustrating knowing that the information is on the website. Before the pandemic I had much better care during an emergency than now. It's worrying that staff appear to have become desensitised to people who have breathing difficulties.
I'm not sure but I'm tagging the nurse moderator account as they are better placed to advise on who to contact to ask, or point to what ALUK may be doing already: ALUK_Nurses
I know from working on medical education materials for healthcare professionals that there are a lot of barriers to this kind of education actually getting where it's needed/put into practice. Though it doesn't mean we shouldn't try, as I completely agree this is not a good situation. As mentioned, I've personally run into this multiple times and it's had a massive effect on me in various ways. Hope that's clear when you read the following as I am not making excuses for it - but I do think it's tricky to address.
The problem is it's a systemic issue, including various levels like NHS trusts, which are in charge of things like making sure staff get protected time for education. And ultimately low staffing levels won't help as everyone is stretched. My partner is a healthcare professional and he says trusts are very variable on what is provided education-wise and may not always honour the protected time for education. So staff understandably can't access the education as they are snowed under with work and will be constantly bleeped and have to leave even if they do attend an education session.
A hospital near me was made by the coroner to give staff additional education on asthma after a child died because they kept sending him home without treatment, saying he was fine and not having an attack.
They were only told to provide education on asthma in children, for staff treating children, even though I could see the attitudes towards and misunderstandings of asthma that led to his death were the same ones many of us have encountered and aren't specific to children.
That was about 9 years ago, I've been there since, and I now avoid that hospital because they don't understand asthma and I've had multiple bad experiences there (thankfully not to the level of that poor boy, of course, but I could see exactly how it happened.)
I also think some quick reference guides have been poorly written, by people who don't understand how to shorten or simplify what's written without completely changing the meaning. I had a look in my partner's emergency medicine quick reference handbook and they'd really changed the meaning of a lot of points when they made it shorter.
Eg making it look like you need ALL of wheeze, cough, difficulty breathing for an attack. Or changing 'unable to complete sentences in one breath' to 'can't use sentences' - they don't mean the same thing. I've had paramedics who genuinely think it's about whether you can understand and use grammatical sentences or not, and if you can construct a sentence that makes sense, you're fine even if you have to stop every word!
Thank you for your reply. It's helpful to hear how staff are affected by their workload etc. I even mentioned what happened to me a week ago to the Severe Asthma Team at the hospital in London that I am under. I was even considering whether to report what had happened by making a complaint to the ambulance service. However on reflection it's not the fault of the first responder if he hasn't been given the training .(he seemed to be more concerned whether I was having a heart attack, which I wasn't) as heart attacks and getting urgent treatment is vital for survival so I suspect training in that has been highlighted because of media making people more aware of it.
If the same could be done regarding Asthma I think it would go along way to improving the situation. I really feel for anyone who has had a bad experience in an emergency. Asthma is hard enough to deal with without the worry that your symptoms aren't being treated seriously.
My reaction to what a paramedic understands about speaking in whole sentences was jaw dropped to the floor and 'wow'. I'm quite happy to explain why I'm not ok and about oxygen sats and carbon dioxide levels and the effects on the body etc. However if I'm unable to talk properly due to an asthma attack it's impossible.
I didn't know they had an emergency medicine quick reference handbook, that's interesting. It's a pity that the meanings have been changed.
I think you could still feed back to the ambulance service if you make it clear you're concerned about the training. It's something they should know about even if it's not all on him as it could be dangerous - you could make it clear you're mentioning it for that reason. After all, ignoring asthma is also a survival issue.
In my area the ambulance service relies on guidance that insists asthma has low sats and wheezing every time and if neither is present then no need for a neb. They often ignore that if they have sense and experience but it's what they're supposed to follow - so maybe if people feed back to them what effect that has they may start to take note. Especially if you can tell them what happened in hospital and what treatment helped, if it's different from what the paramedic was saying.
I've been 'lectured' before by a paramedic who doesn't understand asthma about how if I don't wheeze then the neb won't help because it treats wheeze. Agghh. No. It doesn't treat wheeze! It treats the narrowed airways that can cause wheeze - it's like saying treating someone for a heart attack is treatment for chest pain!! I think he'd just been taught that and not thought beyond it, like with the ones who got odd ideas about ability to speak - the better ones have a better idea of real life. Like you though, it's hard to explain when you can't talk properly (and when they think you can talk properly).
I also often find they get distracted by my heart rate which goes up in an attack and then don't want to give a neb - they seem to have learned that Ventolin can increase heart rate but not that asthma can. Which can also happen with doctors in hospital to be fair and is another concern.
I completely agree it's so much worse when you have to deal not only with the symptoms but also with trying to correct misconceptions mid attack when you can't talk! It just seems like such a huge problem, though I have also had some positive experiences. I just never know which I'm going to get, and the bad ones have left their mark in a big way.
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