I have silent Brittle asthma that has been fairly stable for around 9 years but been extremely unstable since Dec last year. I have posted before and had some fab support, but this has been a weird and disconcerting shift .....
I finally got to see respiratory Consultant at my local hospital, but gutted when she sat there with a blank piece of paper and no reference to all the letters, notes or test results my GP had sent.
She said the spirometry she had booked with my appointment had been cancelled for some reason (internally) - even though she was running an hour late and I could easily have done them in that time!
She barely listened to me and asked hardly any questions before saying she didn’t want me to have Magnesium sulphate any more.
I have had to have IV Magnesium sulphate every couple of weeks or so all year as nothing else has held my peak flow up for anything longer than a couple of hours or so! My peak flow is normally around 460 but it dives to around 100 by the end of the 2 weeks. She also said she doesn’t like patients saying what works for them?!!!
I asked her what I should do instead of having the Magnesium sulphate and she calmly said I just had to wait for her to read the letters etc and she will get back to me at some point once she has sought opinions of other specialists! Surely she should have done that BEFORE seeing me so we could have formulated a plan together?! I am left with no time span or suggestions!
She then said the killer statement “and I don’t want you going to A&E” (I have actually only been twice - one of those was by ambulance called for by my GP in Feb when I went to see him for advice!) other Magnesium sulphates have been arranged by my surgery asthma nurse at local ambulatory centre but that option is no longer available.
I can’t believe it is right for a clinician to say an asthmatic shouldn’t go to A&E? My peak flow is down at 70 at the moment and I am shattered with the effort of breathing.
Only other appointment I have in the mix is Immunology appt after referral by my GP to main teaching centre finally come through...... for September!
I feel lost as to where to turn 😔
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Had to respond to this as it's such a disturbing situation...that is absolutely 100% not right that you should be told not to go to A&E. No asthmatic should be told that never mind someone in your situation.
It sounds like you need it at the moment with that PF and struggling - please don't delay going because of what this consultant has said as it is so wrong and unprofessional! Are you in a position to go to another A&E? If not, I find that mostly A&E operates as a separate entity and will probably do what they should no matter what the consultant has said. I had years of really unhelpful and obstructive consultants who wrote awful letters and A&E at that hospital mostly still did the right thing - where they didn't, it wasn't due to the respiratory department but 'local ignorance' (ie the 'you need a wheeze' not 'your consultant said...'). I never had anyone outright say not to go to A&E but one consultant came very very close and he and others constantly gave me a hard time about it every appt and made it subtly clear they didn't think I should/needed to, which was awful.
So yep...please go asap if you would have done without this consultant!
Longer term I would actually be inclined to complain to PALS as this was really unprofessional. She seems to be leaving you with pretty much no treatment options as well as the unprofessional comment - you are clearly not stable and she's not even trying to get something put in place to replace the mag sulph, or suggest what you should do if you can't have it and can't go to A&E.
Can you go back to your GP and explain the situation? It sounds like they have been supportive and would be horrified at what this consultant has said - I wonder what the letter will say. Will the consultant be willing to put it in writing that she told you not to go to A&E?! It's stupid of her to say things like that even just from her self interest point of view!
If you have immunology at main teaching centre could you go to resp clinic there - do they have an asthma clinic? It really seems like you need more than local at this point, given that I find general resp consultants often have a scary lack of knowledge about asthma. Asthma consultants aren't immune (my almost 'don't go to A&E'/ignoring everything I said cons was allegedly a leading asthma specialist), but I think you have a much better chance of getting somewhere with a specialist clinic than with this local one (especially with a cons who is too arrogant to read anything or listen to patients), and perhaps your GP could explain the situation to them and get you seen by someone asap?
I hope this helps and again please don't delay going to A&E when you need it (which may be round about now...).
Thank you Lysistrata for your reply and supportive comments.
Hearing that someone else has had similar has been very helpful.
Yes, there are 2 other A&E’s within a manageable distance, including the main teaching hospital.
I do also have a referral in the system to the severe asthma clinic in the teaching hosp (referred at same time as the immunology one and as a result of another suggestion from this wonderful group), but not heard back about that appt yet. I had been thinking about using that A&E.
I will speak with my GP about what happened in the Consultant appt as he has been brilliant and as frustrated as I have been.
Decision making is easier when well, what seems obvious/common sense all of a sudden becomes a challenge when you are unwell and vulnerable so I do appreciate you taking the time for such a detailed response. Thank you x
I'm glsd it was helpful though wish more of us did not have to deal with this situation! Like you said below they never seem to think about the effect their words have and I have been left in absolute shock at some of the things said to me, and unable to see a way forward even when I wasn't unwell like you are now. I'm glad you do have some other options - EmmaF91 has made some more great points below about hopefully speeding things up with the specialist centre with GP support. Also glad you've brought things up a bit but does sound like they are not too stable so also agree with her re heading in to A and E if it drops again. Hopefully now you feel more mentally ready; like you and Emma I can find it hard to psych myself up and believe I need it because of what has been said by cons etc in the past. Very glad to hear your GP is supportive at least.
Hope you feel better soon and keep us updated if you feel up to it!
I agree with everything Lisistrata has said. If you're struggling please go and get help. I've also had problems with consultants in the past and have come to realise it's just one opinion! I now know my asthma well enough to know when I'm struggling and when to get help. Thankfully both my GPs are fantastic so I rely on them when needed.
You are within your rights to ask to see another consultant should you wish. I hope you're situation improves soon!
100% agree with Lysistrata so will try not to repeat points but no promises 😅
I can semi understand them wanting to stop giving you mag bags regularly, as too many of them can lead to floppy airways and airway collapse, however she should have explain this to you if that is her reasoning! I know there is a lack of evidence for mag in asthma, however it obviously does work for you (me too) and there is a reason they give it in a&e when they feel like you need it!
Also.... what is she on?? You should never tell an asthmatic not to seek help if they feel they do. I’ve had it once (from a ‘prescribing’ a&e nurse who heard crackles and wheeze but gave only nebs) when they said ‘don’t come back cause we can’t help you’ which resulted in me doing 2hrly nebs for 6 weeks before I couldn’t cope, I freaked out my GP... long story short I ended up getting ‘outpatient’ hydro then my specialist gave me a week of hydrocortisone therapy... I’ve never had a con outright say it but it was heavily implied just before this situation when they decided I didn’t have asthma (newsflash they changed their minds) just DB and anxiety 🙄.
Local cons can be brilliant, but having been through a few (Kent/Essex/Norfolk), I can that there are a lot out there with little true understanding of asthma and the ins/outs of it (I was once sent home with sats of 91/92 and they saw no problem with that, or the time they sent me home almost worse than I came as I had picked up a chest infection)
However the majority of docs actually ask me what I find works best for me as it saves them time (hydro plus mag). We are the ones with the condition, we have been through it a lot, we (usually) know what we need! My hosp went the other way completely asking me ‘how much’ hydro I felt I needed 🤦♀️😅. I do come across the odd ‘superior’ doc who refuses to listen til I ‘prove my point’
I really agree that they should have had an alternative plan in place, and done the ‘spec hosp suggestions’ before seeing you! Ie we want to stop mag because of x, however we’re going to try doing y (hydrocortisone or aminophylline therapy usually).
I’d say go to a&e today (if you haven’t already), and if you need to go to a different hospital (maybe your possible spec one!). Wherever you end up, a&e will treat what they see, before they hunt for notes etc (my crappy nurse excluded - however I know she was told off later about it). My local completely disagreed with the spec hosp deciding no asthma, so treated regardless (and was proved correct at next appt when I was rushed in for a week of hydro).
You can almost guarantee the letter will not say ‘do not go to hosp’, however you can ask to transfer con if you explain what happened. Like Lysistrata I would also suggest talking to PALS to complain about her for the same reasons... if it’s not in your ‘character’ (I dislike making waves myself) think of it as ‘protecting’ the next asthmatic she comes up against! Cause they may take her would as gospel and end up dying at home because of it...
It luckily does sound like you have a supportive GP, so definitely worth seeing them when you’re doing better and the letter has arrived and see what they suggest, esp as they’d be rightly horrified at the ‘treatment plan’...
If you’re on the waiting list of spec you can chase it up and see if you can speed up the wait time (my local have done it a lot in the past for me and it did actually work)
I hope this helps, and that you get the treatment you need soon!! Head to a different a&e if you’re worried - if they admit you you can explain what went on and get their ‘reactions’ (cause they are unlikely to say stuff due to professionalism etc)
Thank you EmmaF91, totally agree with everything you have said.
I actually asked her what alternative to the Mag sulph and she said that I would just have to wait and give her time to get back to me! I also agree with everyone’s comments about A&E working quite independently from the rest of the hospital as the last Consultant in A&E was fantastic and even told me I had done exactly the right thing to go there and I must do the same as many times as I need whilst they sort out what is going on and what plan they put together...... but all that positivity went out the window at the words of the Respiratory Consultant. Maybe they should be shown some of the comments of the impact they make on people’s lives to what they tell us? The fact they can send us away for weeks on end until the next appointment, but we have to somehow survive with whatever quality of life we can muster ..... they seem oblivious to!
I really appreciate everyone’s time and effort to respond.
I have cranked up the home nebulising and was pretty shocked to check my sats to find they were 84% and I am normally a 98-99%er! Have managed to drag my peak flow up to 220 with the nebulising, still half what it should be but a darn sight better than the 70 and will touch base with my GP tomorrow 👍🏻
Gah! I hope the days are back up to normal now, if they’re still below 94 go to hosp now! I’m glad you managed to neb the PF up, but if you keep dropping a&e will see and treat appropriately (just tell them what you’ve had done so far).
If you feel like you can hold out with good sats and an Okish PF then I hope your GP can help you out, if not please head to hosp!
Yeah, docs seem to forget that we have to live with the fall out when they make such comments and change plans! I spent 3 months struggling as when I ‘wasnt’ asthmatic they stopped about 80% of meds and weaned pred, so my local said they couldn’t put me back on them until spec had seen me again (ie seen be bad to agree that I was asthmatics 🙄), and even now with confirmed eosinophilic and atopic severe asthma, (now on Benralizumab), I still felt (and still feel) like a fraud and that I’m making things up (even when docs go into meltdown when I was really bad pre-bio ttt)! My new cons have to say to me ‘you don’t have to convince me, I know you’re asthmatic’ when I kept trying to justify things (like no wheeze, poor maintenance etc) 😅
I do know that feeling EmmaF91 of “fraud”, even though we know we aren’t! So pleased you managed to come through the other side, albeit having had to go through some very trying times on the way. Take care and enjoy the rest of the weekend x
Thanks so much for your concern EmmaF91. I spoke to my GP this afternoon and he was angry & frustrated at what happened with the Consultant. He told me to totally disregard what she said and he would write it into my notes that he has instructed me to do so. He has also asked me to put in a complaint to PALs...... exactly as the lovely people in this group have also been saying 🙌🏻👏🏻👏🏻👍🏻
He said to go to A&E as often as I need. He knows I am always reluctant to actually go there anyway as explaining the situation again and again umpteen times when breathing is grim is not my idea of a good time!! My GP knows my hatred of going there so knows I would never abuse it, sadly by the time I have to find myself there it is always because I have run out of alternatives and have absolutely no choice!
I’m glad your GP was really supportive and agreed with HUs assessment of the ability/professionalism of that Cons, as well as to attend a&e whenever you feel like you need too
Do you have an ‘info sheet’ you can pass over in a&e with all your info? I too get frustrated by having to struggle to repeat info/story when I’m not able to breathe properly. I also have a page where I can hand write what had lead me to a&e. If you don’t have anything like this I’m happy to share a blank copy of mine for you to add/adapt to your hearts desire. I’ve found it really helps and 99% of medics appreciate it esp in a&e!
Glad you’re feeling a little better about it all xx
I have tried taking in a printed sheet to A&E, but they never want to read it, they always say they want to hear it from me!
I guess some of it is to be able to assess just how much you are struggling, but general conversation would give that info!
I find the trying info like past medical issues, medications I have had reactions to etc should just be taken from a sheet leaving me to just explain what the current issue is.
I will continue to carry it with me and I have it in the medical ID on my phone. Thanks for the thought though and would love a look at your template as it might just be I don’t have mine in a usable format and a simple change like that could make all the difference.
Yeah. I have the odd medic refuse to use it, but usually I just say ‘on sheet’ constantly and try to talk then they can ‘assess’ the fact I cannot talk from that 😅
The majority of mine love it cause it answers every question without them asking so they can just copy it out 😅
If you PM me your email I’ll zap my blank over to you so you can see what’s on mine 😉 (mines on word so looks confusing I’ve you view on apple products 😅)
You are a star EmmaF91, your template was really useful and the headings will be easy for clinicians to take the info they need from it.
I can see now why my random list of info was not that helpful when I last went to A&E. I will definitely be completing this and storing it in my phone plus carrying a printed copy with me. Much appreciated Pam x
Just to add I have a sheet like that too and find that 95% of A&E drs love it, so if you use a good format like Emma has with clear headings (I mean I haven't seen it but sounds like mine) they will mostly play ball. I do have some who refuse to use it but they have other problems ie total inability to listen, ignorance about asthma etc! Mostly it really does help and I even found mine persuaded a very conventionally minded dr not to send me home last year. I really think it does make a difference especially as I am not very typical, and my sheet tells them that this is how I present and yes it is different from the usual but it's usual *for me* (eg heart rate will be high from asthma but I can still have nebs, magnesium helps, I never wheeze etc).
Very glad to hear your GP is supportive. How are you feeling now lung wise?
I have had problems in hospital with my asthma but generally I am ok with the consultant who sees me every six months, the problem comes when I am in hospital for something else, usually appendicitis which they have to treat conservatively. One consultant stopped my prednisolone and fludrocortisone . I then had a lecture on taking so much prednisolone daily (10mg)for such a long time. I got angry and got my steroid cards out of my handbag (with the help of a nurse) The cards go back to 1969 and clearly state when I went on the maintenance dose. I then told him why I had to go on them in the first place, which was no choice really. So two days later I was back on my tablets but I had to be nebulised more often in between. I keep all my steroid cards in my handbag, I much prefer the old blue cards to the white ones that the hospital give out now, they look very much like any other piece of paper that they just print out. I have never been told not to go to A&E, but I have been told just go to A&E and not wait for an ambulance. Sorry to hear of your problems.
I agree with everything that’s been said, I would ring the secretary of the severe asthma clinic & see where you are on the list. My consultant is at a severe asthma clinic & is fantastic. Also don’t delay in getting to A&E ,
Oh no! What an awful, unprofessional, under qualified ‘consultant’. You must complain to PALS in due course. How frightening for you.
As others have suggested, don’t delay going to A&E, it’s not her decision anyway, it’s yours. Sounds to me as though she’s had a complaint against her treatment before, from fellow professionals, and she’s watching her own back.
Go to the best A&E you have the strength for, and don’t leave it too late, or you’ll be ambulanced to a hospital of their choice.
Yes, you’re entitled to seek a second opinion. If you manage to get to your GP on Monday, ask for this to be arranged if it’s not suggested...might be something that has to come from you, a patient request rather than an official GP suggestion.
The very best of luck. We are all behind you, Echoblue. Love 🌸 Penny x
Ignore that advice about A and E... I have only been given it before by a GP but every hospital medic i’ve had to relate it to later has said that it is not good advice. As you no doubt know the Uk’s medical record on asthma is not good - when compared to similar countries - so we do need to question this kind of advice. Have you spoken to the Asthma UK helpline?
I found Asthma UK really helpful when my daughter’s asthma was out of control and she had been in A and E (arriving by ambulance after passing out at home) for a few hours one weekend and was then discharged without a care plan or onward referral to a consultant ... after which the GP I saw on Monday (at the hospital’s request) told me unequivocally not to take her to A and E again. I then took her to the GP every single day that week, because she was breathless, and got different advice every day.
Us avoiding A and E wasn’t quite the cost-saver the GP I saw on the Monday thought it would be!
If the hospital or any of the first 4 GPs she saw had mentioned the “salbutamol weaning regime”, which GP number 5 told me about, that would have saved my daughter a lot of distress.
That sounds a very scary situation for you and your daughter. I am so relieved you found a path through it and have better plans going forward. I do think the plans are key and you can take back some control. I am hopping to be in that position one day too. Many thanks for your kind wishes 👍🏻🤞🏻
Hi , you must always go to A&E if you are unwell. I would make a complaint against that Dr. Just send an email to the PALS office. My consultant has it written in my notes that i should attend A&E when I need to. Your consultant should be going through your care plan with you and discussing what works for you.
I would love a care plan, but sadly there are still too many questions not answered and no one to help co ordinate it.
My hopes were on this Consultant and it knocked my confidence when it all fell so flat and she was so obstructive. I have dusted myself down and will manage without her going forward. Just have to wait for appointment at the teaching hospital now. Feels like we spend our lives waiting for answers, appointments and cobbling it all together!! 🤔😉 x
I am so sorry to hear this and glad your gp sounds more supportive. I really was upset reading this, no one should be made to feel like this about their asthma. Please please please DO go to a n e if you feel like you need too. It always feels like us asthmatics only know the severity of asthma and others don't understand. Please go to pals and complain about the consultant. I hope your up in spirits regarding this everybody above has gave great advice. I also hope your asthma isn't too bad right now too x
Thank you Carriejen. These things chip away at your confidence when you are already feeling vulnerable. 😔.
Had a positive turn today though when I chased up the Birmingham Severe & Brittle asthma unit referral as the 18 weeks wait was up and still no word about an appointment ..... only to find out my appointment is this Wednesday and looks like they forgot to send out my letter! Just as well I had chased it up otherwise I would have unknowingly missed it 😱. I am just pinning all hopes on finally making some steps forward 🤞🏻🤞🏻🤞🏻x
I think i have the same type of Asthma as you actually - I don't tend to wheeze and during an attack I am quite quiet as I feel it takes all my efforts to try and get myself back under control. Also my asthma has been difficult to manage. Although, thankfully when it is under control it is very good!! Is this similar to you? I'm glad you got your referral through and I really hope that you are feeling much better soon
Yes, sounds very similar which ends up making it difficult to be taken seriously! I know what feels right and normal and such a consistently low peak flow and small tight breaths is definitely not normal. I was somewhat relieved when the respiratory physio who had every intention of validating that I was hyperventilating had to concede I actually diaphragmatically breathed very effectively, just very small breaths and could give me no advice on how to do differently. “Practice breathing deeper” was her suggestion 😳🤔. I asked her “how” but sadly she couldn’t come up with anything!! If I hear any suggestions I will let you know 👍🏻🙌🏻 x
Is yours triggered by allergies? Grasses are in the high side at the moment. Do you have access to a nebuliser to help keep it in check? Having said all that I take fexofenadine and the nebulising is not keeping on top of mine at the moment so maybe I shouldn’t make recommendations ☺️ ..... I am just conscious that it does sometimes work with an acute flare up.
I do hope you find some relief soon. Definitely worth a conversation with your GP/local asthma nurse. Good luck x
I have no idea what has triggered this one off. I'm on my 9th day of pred and have a 'review' tomorrow afternoon. I've only been nebulised once in my life, usually I'm told because of good sats and no wheeze I'm fine to just go home and take all my inhalers as normal. So I don't know how to go about it now. I've been so well controlled for months!
That is so disappointing for you. I totally get the frustration when it isn’t obvious why and what to do about it. I hope your review turns up some answers or at least symptom management tomorrow 🤞🏻
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