Ok so I've got a new asthma nurse and at my review she told me it's important I tell them when my asthma gets bad for a few weeks cause that's how they track it. And it looks like my asthma is really stable cause I only really mention it to the drs at my annual reviews and if I need antibiotics for a chest infection. So I'm trying to get better at this! Though I did say...well it's kind of hard to get a appointment. I had to fight reception just to get a in person review and the nurse was surprised by this and was like. Well that shouldn't be the case, please just let me know when your asthma gets bad.
So I've been pretty ill this summer and kept getting allergic reactions to food and by the end of August/start of September (just before it got cold) I noticed my asthma really wasn't that great. So I thought, maybe I should get in contact with the asthma nurse. But I get anaphalactic type reactions to food so my whole body teams to be messed up for a few weeks so I wanted to wait to see if it would calm down. It didn't so after a few weeks I gave my drs a call.
The only thing was. I wasn't really sure what 'letting her know' involved. Did I need to make a appointment? Did I just get them to pass on a message? So I tell the receptionist what the asthma nurse told me and explained I felt I was having a exerbation and needed to let the nurse know. She said it was no problem and she'd pass it on now so I figured the nurse could decide if I needed to see her. A week passed and nothing so while I was on the phone about something else I mentioned it and they said they'd make sure it was prioritised with the asthma admin team (I think there's some burecracy going on here) so then we get to the end of the week (Chased on Monday) and I have 2 missed calls minutes apart 8am on Friday no message left. I know I should have called the drs that day but I was really busy with a important meeting and stuff and I don't think it's unexpected that you will have to try more than once to call someone unexpectedly on a week day morning?
Anyway today (Monday) I was in the drs anyway so I decided it was best to just skip whatever Is going on with this asthma admin team and just book a appointment with the asthma nurse as my asthma has continued to be bad every day and I had a bad night last night. Reception called over someone from the asthma admin team and they said yeah you need to see the nurse and then they offered me a appointment the Friday after next.
I don't know if I'm misunderstanding thimgs but surely a exerbation wouldn't necessarily be expected to last another 2 weeks??? I might be better by then. I know the NHS are pushed but this seems more like a that week acute appointment kind of thing than a wait for a appointment? I don't know. I still don't fully understand the exerbation thing as tbh I'm used to having chest infections one after thr other from September to March and just kind of expecting not to be able to breathe very well for the whole winter??? While I've had asthma since I was a baby and been on steroid inhalers for years I'm pretty new to actually monitoring my asthma and trying to not be ill all winter lol
Additional info: I'm taking my usual meds normally. Montelukast and relvar once a day. It's not a inhaler I can step up. I have been trying to use my blue ones rather than just pushing through and slowing down when my chest gets particularly tight but I do tend to forget it's a option tho it does help when I use it. My asthma symptoms tend to be cough/tight chest rather than wheezing and my peak flow always tends to be pretty high even when I'm ill.
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Oh I should have said. The ventolin does SOMETHING but I still don't feel good even straight after taking it. It's a bit easier to breathe but my chest is still tight and hurts and I'm more breathless than usual
Yeah my asthma plan says to contact the nurse and to keep taking my pills and inhaler each day and use the blue reliever as needed. To be honest it's not exactly tailored. It's just a standard plan, it mentions symptoms I don't even get which I've mentioned several times. To be honest I feel like most of my asthma care is more about them ticking boxes rather than looking at my Individual health. I don't get typical symptoms so I score as well controlled even when I'm not.
It does sound like the admin is getting in the way. Like you say, if someone is struggling with asthma they need an appointment soon, not in a couple of weeks! It sounds as if the nurse isn't aware of what's happening on the admin end when you try to get in to see her - something to flag when you do manage to see her.
I'm not sure about 'call when your asthma gets worse for a few weeks' though - I don't think you should be waiting weeks to see what happens! If you're having a flare, things can go bad much more quickly than that and you shouldn't have to wait a couple of weeks to see what happens. It also means that you look better than you are because any individual episode that resolves more quickly but keeps happening is also a sign of poor asthma control. They need to know about those too.
Of course, if you get worse while waiting for an appointment - or actually do this now, given you're having to wait and are struggling - then don't hesitate to call 111 (I think sometimes they can get you an appointment with your GP if the GP surgery isn't being helpful). Or 999/A&E if really struggling (can't talk in sentences, unable to speak/eat/sleep due to breathing, reliever not helping).
I would say it also sounds like you need to discuss your asthma more generally, along with those anaphylactic reactions you mention. It sounds like your asthma hasn't been controlled over a period of what is now months, and your preventer regime needs revisiting. It seems as if you've been given the impression what you're dealing with is ok and normal, when it isn't.
I suggest you discuss that with the nurse when you get to see her -make sure she knows actually your asthma isn't 'really stable' at all. Before you go, I'd also recommend discussing all this with the nurses on the helpline too -they can listen and advise what to raise with the nurse in your appointment. Call us on 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm
Tbh I think part of the problem is I'm not overly sure of when my asthma is and isn't bad so it's hard to make sure they get it? I was diagnosed at a few months old so I don't really remember ever having not had asthma. There were a lot of things that I thought were normal and unavoidable which I now realise were not! (The several chest infections a year for one lol) I'm beginning to get a better handle on things but I still struggle to identify what's normal and what's a worry as I do tend to compensate when my breathing is worse as I'm used to it.
If I was struggling to talk in sentences while not ill I'd know I needed to be seen sooner but I struggle more with the. I know my asthma isn't good at the moment. It doesn't seem well controlled, should I be calling. From what you're saying, the answer is yes 😂 and I shouldn't be waiting to see if it gets better by itself.
To be honest I've been having major issues with other allergic conditions and in spite of having been told for years that my asthma was allergic, my drs don't seem willing to see that there could be any link between the rest of my allergies playing up and my asthma being affected. I'm supposed to be under secondary care for my other atopy but they're refusing to see me so I know my allergy medicine regime probably isn't ideal and that can't be helping my asthma, but I struggle to identify if my asthma is bad or if its just mild and I'm overreacting. I've not been hospitalised with it since I was a baby so I feel its pretty mild but then I'm not exactly presenting to the drs when I'm unwell with it so i think i need to get better at that.
I'm going to speak to the nurse on the phone tomorrow and see what she says.
Hmm that doesn't really sound like great care. I definitely agree a big part of managing asthma is learning what you need to do when and how your body specifically responds and shows you there's an issue.
That can take practice and education, and it's not the same for everyone. For one person with asthma it might be religiously tracking their peak flow because they don't notice symptoms. Then for someone like me the peak flow number by itself might be less useful, but it is helpful to know how I respond to reliever. I remember an asthma nurse once told me she had a patient who knew they were having a flare when they suddenly found they needed to go to bed really early!
It's not helped by conflicting messages from healthcare professionals and confusion over whether you can trust your body! I hope the helpline nurses can help clear it up.
You may find this older post useful - it's just a guide to what to do when for things like seeing your GP or asking for a referral: healthunlocked.com/asthmauk...
It occurred to me that the nurses recently posted this on the forum and you might find it helpful since your GP surgery doesn't seem to be very good with asthma: healthunlocked.com/asthmalu...
That's interesting with the different signs for different people. Maybe I just need to find my set of signs. I definitely don't tend to notice I'm getting worse as I'm used to compensating but my peak flow has never been particularly reliable. It's always a lot higher than they'd expect and doesn't change much when I'm ill.
I suppose what I find difficult is while I do have these flare ups quite a few times through the year, I do push on fine and they do get better themselves without intervention. I know that's not always going to be the case and that's the risk with asthma. But it's hard telling myself that it's worth taking extra medication when I SEEM to be getting better without it. But recently I've begun coming round to the idea that actually these weeks of increased inflammation are probably not very good for me long term? And while I seem to be recovering by pushing through I'm maybe not and long term doing damage to my chest. Is that somewhat accurate?
I've had a look at the posts. They are useful thank you. I think what i struggle with is this all seems very reasonable for people with more severe asthma. But my asthma really doesn't seem that severe. It's very rare I've had a episode where I actually can't breathe, I only ever get to the stage of not being able to breathe very well. And I'm managing that with just my dual inhaler and montelukast and my rescue inhaler occasionally. It's only really the chest infections that cause me trouble and I've managed to reduce them hugely since the pandemic. When I compare that to people who are in and out of hospital in real trouble while on 5 medications a day I really do feel like I'm making a fuss out of nothing. I know it does no good to compare but I don't want to waste the nurses or drs time when they could be seeing someone with really severe asthma and helping them.
You also deserve treatment though - it's not all reserved for 'people worse off'. Your asthma is your asthma and it deserves treatment. If you want to really look at it in cold hard non-humanistic terms, if they don't help you now you may well need more of their help later as yes, long term poor control isn't great for asthma.
I unfortunately have found a lot of short term thinking goes on about that and some people have the mentality of 'it's just a chip pan fire not the whole house' for anything less than a bad attack needing admission. I was once told it wasn't a severe attack as I didn't need back to back nebs, intensive care or intubation, even though I needed treatment in resus. Umm no, that's well past severe, and no one should be ignoring or downplaying asthma until it gets to that level. Oddly enough, that attack dragged on and caused more trouble than the following time when they hit it with a lot of treatment straight away.
If you don't deal with a chip pan fire effectively it might BE the whole house soon - the ICU admission which could have been avoided. And if you made the house more fire safe to start with then there might be no fire.
It's too easy to keep doing that comparison that you don't need or deserve treatment. I do it a lot and have to remind myself I'd never suggest to someone else that their asthma or anything else doesn't deserve treatment, so why say that to myself? Sometimes it works...
Thank you, I appreciate the time you've given me in these replies. I'm waiting for a call from the asthma nurse now so I'll see what she says and I'm thinking about having a chat to the asthma UK nurses too.
You're welcome! I recognise the thinking and want to help others get past it - easier for someone else than me I find.
Definitely talk to the ALUK nurses. They can treat you but they can listen and make suggestions which can be very helpful. They also have more time to do that than your asthma nurse (and probably know a lot more about asthma).
The advice to call if it's worse for a few weeks sounds odd to me too.
I find any respiratory complaint, even a mild cold, makes my asthma much worse, and it takes about 4-6 weeks to get back to normal. Last time I saw the asthma nurse midway through this process, she said it was ok to stay on my current levels of medication if I was happy with that, but that I needed to come back again if things didn't improve after a few weeks - i.e. if my recovery period started taking longer than usual. But she also emphasised the need to call 999/go to A&E/return for an emergency surgery appointment as appropriate, if things got worse.
I wonder if what your nurse said to you was a badly communicated attempt to say the same thing?
I wondered that too re the communication. I think some healthcare professionals are better than others at communication.
I have a job mostly because many of them aren't good at it in relation to research, but I find some of them aren't wonderful at it with patients either, even if they mean well.
Tbh I think she's just trying to encourage me to contact her more as previously I was only really going to her for reviews and giving her 12 months of updates at once. I would go see a Dr once I could tell a chest infection wasn't shifting and they'd prescribe me antibiotics and steroids (or in recent years tell me to keep taking my steroid inhaler) but I felt I was wasting their time if it's something that might never get life threatening without treatment, so i was waiting it out.
I understand now that's not a very good idea as its not very good for my lungs to be inflamed for a extended amount of time and then go without treatment, even if I can push through. So I am trying to be a bit better about monitoring thimgs and keeping her in the loop.
I'm just a bit hesitant to contact my drs unless i REALLY need to as I find the wait and then the game to convince the receptionist to give you a appointment and then going to the appointments itself a bit overwhelming. I've got other health conditions and it feels like I'm always having to go to the Dr so I do put it off. I honestly think she was just trying to get me to come in MORE without putting me off completely by suggesting I come in lots more?
If you're still experiencing difficulty breathing even after taking Ventolin, it sounds as if you need urgent care - do you have a walk in centre near you? If nothing else, at least call the asthma UK helpline and ask their advice - I'm no expert, but it sounds to me as if you need to be seen quickly, not having to wait two weeks.
I'm not unable to breathe or gasping for breath, it's just. My chest still feels tight and kind of uncomfortable and my breaths aren't coming so easy and don't seem quite enough. It's not a emergency situation it's just, the kind the nurse said I need to be telling her about. I've managed to get a phone appointment tomorrow so I'll have a chat with her and see what she says. I don't think she's got any idea I've been trying to contact her at the moment to be honest
Prob best to jot down yr symptoms,so u don't forget.also that salbutamol helps but not enough - u may need to take more if she agrees.do you have a peak flow meter - if so do some readings when ' off' + when feeling better.if u haven't,ask for one
Yeah I've got a peak flow but it doesn't really reflect how well I feel to be honest. As a child I did plays and stuff and was taught to project my voice and breathe through my diagram and I do like to sing, I understand this can increase your lung capacity and make the peak flow higher than expected? Even when I'm really struggling with my breathing my peak flow isn't that much lower. I think I'm just maybe one of those people it's not so useful in.
Over the years I've learned to be more direct with my expectations as far as my GP surgery goes. If I'm experiencing a flare up/exacerbation, I'll telephone first thing and say that my asthma symptoms are bad and I need to talk to a Dr today for additional treatment. Now we have to fill a digital form and return that as soon as completed and they triage the requests for same day telephone consultations. Earlier this year I telephoned at 8.30am, got through by 8.40, form sent to phone, completed and returned by 9am., my own GP phoned me a 9.10am and offered me a 10am face to face appointment. Impressed.
But if I have increased Ventolin use, say 4 times a week instead of 1 or 2, I will just ask for an appointment with the asthma nurse to review my treatment plan.
Given what you say, I think you need additional treatment now, not in 2 weeks time, so ask for a same day telephone consultation with your doctor. If you meet with resistance, call 111 and if they think you need additional treatment to deal with the exacerbation, they will either make an appointment at a walk in clinic or tell you to phone your surgery again, but they will have noted your digital records to indicate you need an urgent appointment and reception has to facilitate that.
Thank you, yeah I think you're right and I need to be a bit more forceful. I'm just still getting there a bit with feeling like I'm wasting their time. A life of asthma in a family of asthmatics has left me a bit uncertain of what actually is serious and I feel like whenever I do go to the drs when I'm really struggling with my breathing with a chest infection ect they seem a bit dismissive and I worry I don't need to be there. They always look for a wheeze even though I tell them I tend to cough rather than wheeze and then when they can't find it they say I'm fine. I don't want to be on steroids if I don't need to be so I don't like to push it but in recent years they've become so hesitant to prescribe them I think I'm probably not getting them when I need them. The last few bad chest infections I've had the Dr has tried to start me on a brown inhaler as steroids to help me get past the infection??? And when I've explained I'm on a daily preventer and have been for years, they just tell me to keep taking it? If i ask any questions about my asthma to a Dr at the surgery they tell me the asthma nurse is the expert which I don't doubt but. She can't prescribe.
I do know the asthma care at my surgery is less than ideal but I don't feel like I'm ill enough to be needing asthma review in secondary care and to be honest I can't access the allergy team as is.
I think you would really benefit from talking over your symptoms and current treatment with the Asthma UK nurses. They can put everything into perspective and advise on what you should expect from your primary care team (more than you're currently getting) and how to get better care. They'll go over all your options.
I understand that many GPs emit the "dismissive" air to patients and it can feel like we're a nuisance. But asthma is a dangerous disease if not well treated and that takes precedence over any GPs weariness or lack of understanding. My heart sings if I ever see a GP who gets it. And the magic "come back to me if things haven't improved in x days. Don't hesitate to call" is priceless, but rarely spoken. But that's exactly what we should be doing if treatment isn't doing the job and we shouldn't wait to be invited.
The helpline number is 0300 222 5800 and operates Mon to Fri, office hours. They are extremely helpful and knowledgeable.
Yeah I see what you're saying. I think I just worry that I might 'misreport' my symptoms and make out that they're more or less serious than they are as I still don't fully understand how mild/severe my asthma is even after all these years. I'll definitely think about it.
Update: I don't want to be negative, you guys have all been amazingly supportive. But. Yeah so I waited 2 and a half hours and the nurse never called. No text or anything in my notes to say the appointment was cancelled or anything. I'm just. Tired. I'm under all these specialties and it's the same with each. My asthma is probably my mildest condition which is why I maybe prioritise it less but. I just can't do this. I don't have the energy for it. This is why I don't tell them when my asthmas bad because everything is just this battle. It sounds stupid but this is now 2 calls, a visit to the surgery and 2 and a half hours waiting for the phone to ring (i dare not do anything while I'm waiting as I know they won't call back) and I've got a energy limiting condition. Me doing this is the difference between getting to eat a meal or wash my hair. I want it to be worth it, I want to be a better patient who's fighting for my asthma to be as controlled as possible but. I just can't do it
Ok I woke up early to call drs and I've got a appointment with a non specialised nurse this morning. I did say I was a bit concerned as previously even a GP said I needed to see the asthma nurse not him but hey that's all they can offer me lol. My asthma was worse again last night but my peak flow is still only down to 440 from 490 even though I can't take it without coughing now. Bit concerned a non specialist nurse will be really focused on peak flow and wheeze which I don't have lol so I think I'll give asthma UK a call before the appointment just to discuss what I should say ect. Sorry i was so down in my last update. I'm feeling more positive now, just tired
I hope this nurse can help - and definitely call the helpline nurses first!
And tell them what you were feeling in your last post. It's a really horrible situation/catch-22 to be in having to fight to get care when you don't have the energy because of the conditions you need care for! And you really shouldn't have to push all the time, but from experience, I know it can happen.
I will say while I don't know of/am not dismissing your other conditions, the poorly controlled asthma won't be helping your energy levels. It makes me feel pretty exhausted when it's acting up even without anything else to add into the mix. So hopefully it may help a little/get a little more function back if you make some progress with the asthma.
In future, maybe not today as quite late notice, is there anyone you trust who could go to appointments with you to help get everything across? It can be easier to advocate for someone else than yourself, and I'm terrible in appointments due to past bad experiences - I freeze up and can't talk sensibly.
I understand you may not have the right person in the right place though - you don't want to pick someone who tries to dominate/goes in aggressive because they're outraged on your behalf, or means to be helpful but derails things. I have a very small group of people I'm happy to be with me in that situation, and oddly my former colleagues were among them based on them coming to hospital with me from work - but I can't exactly ask them to come to an appt with me! But if you do have someone who might be helpful, then perhaps ask if they could come with you next time.
💚💚💚 thank you. i'm feeling much more positive about things and youre completely right, uncontrolled asthma is hardly going to help me deal with the rest.
unfortunately there isnt anyone who can come to my appointments with me which is part of the problem with me finding the constant admin mess ups and all the appointments and the to and throw of it so exhausting tbh. often it feels like its just me against this mammoth of a collapsing system fighting to be heard
so i had a chat to the asthma uk nurse today and it made me feel a lot better, tbh a lot of what she said had been my initial gut feeling with things but because i kept getting dismissed i was thinking my asthma was less of an issue than it is. she's encouraged me to ask them to run some investigations related to pneumonia and whooping cough i've had in the past as they could have caused damage to my chest that might be complicating matters. ive asked for these investigations before and my surgerys response to me was part of what had me worrying i was a hyperchondriac.
the nurse i saw today didnt really know about asthma or asthma medications and openly admitted this lol but when i told her about my convo with the asthma uk nurse she was more than happy to prescribe a course of steroids so i think Poobah was completely right, its about how i talk to my surgery about my asthma. coming at it from the angle the asthma uk nurse recommended immediately had them listening where as previously i have to fight to get a appointment and then they look at me like im crazy when i say im concerned i cant breathe lol. ive been way way worse and been refused steroids before and been asked why i'd even think i need them when im already on a steroid inhaler, so im definitely going to change my approach going forward.
the nurse i saw in the surgery encouraged me to see the asthma nurse in person next friday and review my meds and the asthma uk nurse had a really good idea, and suggested that i could agree in advance with my surgery to have a higher strength inhaler just in the winter and then use my current one in the summer. this was really comforting as although ive come round to 'steroids are way better for my body than uncontrolled asthma' i really dont like that ive been on steroids since i was a baby pretty much and i do like to keep my inhaler as low strength as i can get away with and am usually really hesitant to increase the dose because i feel like i get 'stuck' on a high dose. my inhalers only ever seem to increase never decrease. but i think agreeing to go on the higher version of my inhaler just for the winter when i really need that extra could be a really good compromise.
the other thing im going to have to consider is if this inhaler works for me which i really really dont want to have to consider as in terms of compliance, this is the first inhaler ive been able to use reliably as prescribed (ive got adhd and compliance is really hard for me even with every trick out there lol, but i switched to relvar as its a once a day inhaler and once a day i've been able to manage!) unfortunately i think i do need to consider that dry powder inhalers MIGHT not work so well for me. i can taste the powder when i take it (its minty!) which i think might mean not so much is getting to my lungs? i had a chat with the pharmacist but tbh i think i need to maybe speak to some ppl whove actually used dry powder inhalers lol as the non asthmatic drs and pharmacists are always like. its completely tasteless. and im like. well it definitely isnt lol i just need to know if me tasting it is a problem (wrong technique maybe???)
anyway! i'm going to review my technique for the next week or so, so im taking it as well as i possibly can, and ive got a few options to discuss with asthma nurse when i see her
I'm really glad you're feeling more positive about it all - I totally get what you mean about dealing with the system though!
I'm glad the appointment with the nurse was a bit more helpful and the ALUK nurse was able to provide some strategies. Strategies definitely needed I find but no one ever really admits to it or most of the time tells us what they are. We have to find out by trial and error and deal with the fallout until we work it out.
I'll also give the non-asthma nurse credit for actually admitting he didn't know! I don't mind when they admit that - I mind much more when they don't know but pretend they do, especially if they also assume the patient must know less than them.
I am groaning and rolling my eyes at 'you don't need oral steroids if you're on inhaled steroids' - seriously, asthma care in the UK is ridiculous sometimes. There are literally guidelines on this - though admittedly they're not very easy to use sometimes. But it's a bit scary and dangerous to deal with when you're the ill patient and they have no idea and won't check.
I've never been on Relvar but I can feel my Fostair is a little gritty, if that helps, and I'm aware it's there. It still seems to work though! I would start a new post to ask about that as it will get lost in here. Did the pharmacist show you the correct technique? If you're doing it right it should be getting in. Some people just do taste more and are more sensitive to noticing taste than others - it may be you're one of them.
Yeah I always appreciate any medical professional who admits it rather than trying to muddle through and getting offended that a patient could possibly know more than them 😂
Yeah them not following treatment guidelines and acting like I'm crazy for suggesting a treatment that's literally first line on nice is the bane of my existence 😂😂I can definitely report that's NOT just a thing with asthma care but I'm sure that's of little comfort to us all 😂😂😂😂
I'm so glad I reached out to you guys and took your advice and spoke to the asthma UK nurse as I'm feeling so much better about it all. I really was beginning to feel like I was making a big deal out of nothing after years of dismissive drs and was really believing I had this mild asthma that was perfectly controlled and was crazy for worrying about my chest. But I see now that's really not the case and I need to get on it a bit more as it could well be contributing to my poor health overall.
The pharmacist did not 😂 I think relvar is getting more common now but he didn't have much experience with it which I've found pretty common. However, I did it properly yesterday standing and following the guidelines perfectly and not doing my lazy just about to go to sleep quick inhale in bed and I'm done 😂 and I recognised what you describe here. A tiny bit of texture, but yeah I can tell its getting in as I took it a bit earlier in the evening so i noticed the improvement to my breathing. I might make a post to other relvar users at some point yeah but I'm feeling a lot more confident with it. I do have really sensitive taste anyway so there's no way I'd get that gritty feeling and not taste something tbh 😂 the taste of the predistolone rn is making me miserable 😂😂😂 so yeah I think you've hit the nail on the head there. Thanks again
Sadly, this seems like the kind of response, or non-response I get from my GP practice. Nothing ever gets followed up. I would not rely on the receptionists word on anything- that is my experience. Push for an appointment with the asthma nurse when you feel you are experiencing an exacerbation. Your asthma doesn’t seem under control; perhaps ask your nurse to review/change your inhaler type? (If you would be so ‘lucky’ to get an appointment.) I had mine changed recently and it has made a difference.
Thank you!!! I've actually posted a few updates and I'm feeling much less miserable about it all now 😂 I pushed for a next day appointment and was immediately prescribed steroids and told to see the asthma nurse next week to review my daily medication 💙💙💙
Ah, sorry, yes, I didn’t read the replies until after I posted! Glad that you are feeling better and have it sorted. It sounds to me that you may be better off with a different inhaler.
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How long does it usually take to get. Over a bad attack?
How do you know?
What do I do first? Sorry, long post.
