Asthma review: thinking about your la... - Asthma Community ...
Asthma review: thinking about your last primary care asthma review please tick all answers that apply. Comments welcome
ALUK_NursesPartnerALUKAsthma Nurse134 Voters
I had a really unsatisfactory review that took all of 3 minutes. I complained to the practice because she had no idea about my asthma. The head nurse then did a review which took her 30 mins but she had all the correct information.
I am pleased that you took it further following your 1st review.
I have not had an asthma review with my GP / Asthma nurse since May 2020 and this was a phone call. I had a phone review for my bronchiectasis in November 2020. I was classified as Clinically Extremely Vunerable and had to shield so now I’m feeling ignored.
I can't recall when the last review was, but they used to be annually. But I have been referred to Respiratory. I am waiting for an appointment.
I have never seen anyone face to face for my asthma, I was diagnosed over the phone and have had reviews over the phone. I did get to see a paramedic when I had chest pains and she examined my chest, which at least set my mind at rest.
Same experience here. When I first got worried about my wheezing and breathlessness in the winter of 2020 the asthma nurse relayed all my symptoms to GP and I was given a peak flow meter and inhaler. I have had asthma nurse reviews and x-rays etc. I was told I would have a in-house lung capacity test at some point when Covid had calmed down. I'm still waiting for that!
That's pretty much my experience, minus the x-ray. I have got the rheumatologist in person in a couple of weeks for my other conditions, I might kick up a fuss and see if she can send me for an xray,
Respiratory nurses are very well trained but it is still a doctors responsibility to see new patients and decide on treatment (s).Covid19 has created a shortage on top of a shortage of NHS staff. Specialist nurses have had to step up to the plate and take on more responsibility. However, the emergency situation is over ; for the moment, therefore, things should be going back to normal and patients should be seen.
You pay for NHS services, it is not free, it’s a National health insurance.
Same story here - diagnosed over the phone, told to pick up inhaler and spacer from the pharmacy. "Just use them as normal." When I pointed out I'd never used either before and had no idea what I was doing, I was told to search online for advice. First maintenance inhaler actually triggered an asthma attack, so GP swapped me onto another one - but then keeps issuing the first one and I have to ring up and point out that's the one that stops me breathing and please could I have the one that helps my asthma instead! Kept being told 'come back if your asthma is not well controlled' but again, no information to help me know what was and was not 'controlled'. Oh, and 'follow your asthma action plan', but again, no information on what one was or how to get one!
If it wasn't for the Asthma UK nurses, I dread to think where I'd be - they've told me how to make an action plan, given advice on how to fill it in, talked me through the proper way to use an inhaler and spacer, told me how to know if my asthma is 'controlled', what an 'asthma attack' looks like and when I need to contact my GP or the hospital. (All the stuff I thought my GP was meant to tell me) They have probably quite literally been life-savers!
Gosh, that's terrible. I did get told to watch an online video, but the nurse described everything first and told me which video to watch.
I do worry about what might happen to someone who doesn't have internet access to find resources like Asthma UK. Or someone who has poor memory/literacy and wouldn't realise the inhaler they'd been issued with is the one that caused a bad reaction previously!
This situation is absolutely obserb I would put it in writing telling them all of your problems and say that if you do not get better advise and tests etc. with the practice manager Then you will be taking your case up with NHS England by email NHS England at england.contactus@nhs.net you can also usethis web site for further information. You will be surprised what happens when you do this because I have and brought results
I've been on that many different combi inhalers in the end I've end up back on the old ones I used to be beclometasone 250 and salmeterol 25.I'm waiting to have a ct scan but have to wait for an appointment to use the one in xray.
They offered me twice an appointment for the mobile unit but where the parked it is halfway down the emergency ambulance road upto A & E outside the coronary care unit in a lay bay
But difficult for me as I've got mobility problems due to osteoarthritis and hypermobilty which causes chronic pain.
Couldn’t tick any of the points because non of them have happened in last 12 months!
Me too Oldandgray
I've had regular asthma reviews throughout covid, but they're telephone based. Even now all appointments at my GP surgery are telephone based, no indication of moving back to normal F2F consultations at all. I go in for annual MOT bloods, weight & blood pressure so don't understand why other appointments aren't F2F also, especially now that everything else has opened up. Those who have developed breathing difficulties and diseases in the last couple of years are being badly served as they can't access testing and accurate diagnosis and this can only impact their treatment and care.
I agree entirely with all of your comments. For the last 5 weeks I have been taken to my local A&E with emergency blues and twos for chest pain difficulrty breathing and epiletic attacks every 5 to 7 minutes but told after a blood test test to go home and you will have to live with it. OK perhaps when I get my big white wings and a halo someone somewere will listen and stop using tickbox diagnostics
I don’t know what’s happening in our hospitals. I can only assume that doctors are so fed up and stressed that they are spouting such advice.Perhaps they no longer fear litigation, people are too poor these days?
😔 that's awful the way you've been treated
That's awful. Would the person who said 'go away and live with it' live with?!
This is true they dont have to put up with it but I have osbserved a number of times particularly in A&E you get this Although this is not asthma related but I am now told to put up with TIA Attacks and Epilepsy. I did have my revenge once when a patient in the next bed to who I know is an A&E doctor complaining that he could not breath. So I said practice what you preach in A&E go home and put up with it. He suddenly realised what he had been saying for a while and whent a funny red color. I wonder what he tells patients now
I was invited for face to face appointment. When I got there I was told by the nurse that she is happy to discharge me from annual reviews as I’m being treated by a more specialist respiratory consultant working up to transplant. What a waste of appointment. I highlighted that I’ve not see my consultant since feb 2020 and would prefer she continues to offer me these annual reviews. Her reply —it’s pointless as the consultant are happy with your technique and prescriptions and I’ve direct contact with consultants secretary should I run into any problems. Tick box exercise.
What will they do without tick boxes and passsing the buck
Whatever happened to psychological care?
Exactly mauschen , lung disease not only effects our physical health but also our mental health but I personally feel we are left to get on with it
😲😠 shocking
I have had a review every 6 months with my consultant by video call and he has called me if he’s felt I need to be seen face to face. My last review was a video call and we came up with a plan to try and reduce steroids through summer, and I had a pseudomonas infection last year which was treated with ciprofloxacin followed by 3 months of colomycin nebs, following a chest infection in January which only responded to ciprofloxacin I have been restarted on Colomycin nebs to see if this reduces my infections. I had a referral to the sleep clinic due to reduced o2 levels overnight and also a referral to respiratory physiology to try and help with clearing mucus as it’s really sticky and difficult to clear.
Excellent management, your team on top of your situation and you are well informed.When you know your specialist, a face to face is not essential but what is essential is good communication and a management plan. You have both and I am delighted that you are being so well looked after. You have come through a scary time and your team were on the ball.
I wish everyone on this forum could get the same service. You are living proof that a management plan with good communication can work.
Take care and thank you for sharing your positive experience with us
I don't know what my surgery is like for asthma reviews as I've never had one there. They used to send out invitations for them with the healthcare assistant which I was not impressed with. Healthcare assistants do a valuable job but they are not trained nurses - in fact I suspect some 'asthma nurses' in primary care aren't given training or resources for it either, and are just assigned the role without any support.
In early 2020 my surgery did book me in for a face to face review with a nurse, but it was cancelled due to COVID. I think they generally see me as 'that weird one who goes to tertiary clinic, let them handle it'. That's honestly fine with me, though it would be nice if my tertiary were actually useful. Asthma nurse specialists can be absolutely brilliant and I've met some really good ones, but I have somehow ended up instead with one who's more like one of those untrained GP nurses. I'm more than happy to repeat the basics like checking technique as I know things can slip, but we never actually get much past that, she never seems to read notes or remember anything and she's always saying things like 'no wheeze, that's great!'😡
I do get a phone meds review with the pharmacist who usually does the asthma control test.
I suppose I could be more proactive and my surgery would probably help if I asked for it (they've sent me a text about a 'long term condition' review a couple of times). On the whole, barring one or two GPs, they have been reasonably helpful so far and I hope that continues. It would be nice to get back the ability to choose which GP I see/speak to though. I've found some are more understanding about asthma/atypical asthma than others.
I feel that I am banging my head on a brick wall because once again none of us comply with tickbox medicine, which I have mentioned in previous responses. They I say" I THINK it could be this or it could be THAT take theses tablets and go home, goodbuy" what a waste of a day for 2 minutes
Hi Lysistrata, I had a very unsatifactory annual review with a nurse I had hoped I had got through to at last. No such luck. Had the usual bout of bullying about changing inhalers. I had to nearly lose my temper to explain yet again that I had had bad experiences when forced to change. On one occasion I had bad palptations and thought I was going to die. On another, years ago, the medication gave me the tremors. I was a working goldsmith at the time. Not funny. I then had to argue my corner about my use of Ventolin. I am allergic to so many things it is not possible to avoid them all so the rescue inhaler is literally a life saver for me. My GP had been trying to get me to take medication for high blood pressure. I pointed out that I suffered from white coat syndrome, and my blood pressure would always be high when I am in a doctors surgery. Luckily this time I had been taking my own blood pressure readings which were well within the safe limits. I had bloods taken, no idea what for, no idea what the results are either. Getting heartily sick of these so called annual reviews. When I pointed out that I was 68 and had been asthmatic most of my life and I didn't want to rock the boat, the nurse laughed and said I was a mere youngster. I should have told her that my family had a history of kicking the bucket before the age of 70, and that at the moment I was trying to come to terms with a diagnosis of osteoarthritis in my shoulder. When I lived in the north west I was spoiled with an excellent "qualified" asthma nurse and a GP who actually listened to me when I had an appointment with him. I have never felt so unsafe or insecure as I do now. Sorry for the rant, but really.............!!
I use a respiratory nurse at local charity for my daughter's reviews, they check her inhaler technique and give a proper asthma care plan as well as discussing any issues we've had and this time they did a FeNo text too. The last one she had with the GP surgery was face to face late 2020 when her asthma had been really bad and didn't give any peak flow values for the asthma care plan even though we had presented her with her peak flow chart and just said it was ok as long as they were above 300 which was very low for her.
No review for 3 years useless the don’t seem to be bothered
Sent a link to a form via SMS from GP's surgery.Filled in form, it asked basic questions about how often I use my salbutamol, how often I feel breathless etc. About 10 days later I received another SMS saying that my asthma appeared to be well controlled (I agree with this) together with links to my management plan and other useful information. I guess we'll go through the same palaver in 12 months.
These assessments are great if you only have asthma but if you add another respiratory or cardiac diagnosis into the mix, it skews the results
Had a form to fill in via text message about my asthma this last 12 months. Message back saying that I don’t need a face to face appointment. Quite happy with that.
i have a consutant who has never seen me, promised to keep an eye on me(!) and then nothing for 7 months. Can't breathe. Told him the inhalers don't work and if I take the full amount I am crippled by cramp. No response. Very very unhappy. Cornwall.
Hey Aquariel, I am so sorry to hear this - have you flagged with your GP?
I’ve now refused asthma nurse review at GP and remain under consultant due to constant inadequate review - it usually goes ‘everything okay, yes, inhalers doing their job, yes, okay see you in 12 months’ - that’s the norm. No checks, just 2 questions which, given the state of my asthma at the moment, is awful. I have pharmacist telephone call now to approve prescription yearly renewal
NHS appears to be making cuts in the wrong places
Yes, respiratory is the poor relation compared to other major illnesses , I feel we have been campaigning for many years for adequate care .I think it's a post code lottery what level of care we receive
I agree
To be fair, where I live I have had excellent care from my hospital’s respiratory department. Since I ended up on their radar last year I’ve had three face to face appointments in the space of nine months. I’m very impressed- particularly given that I haven’t had a face to face appointment with my gastro consultant since the end of 2019 (though I am due one imminently and I have had phone consultations). You would think that respiratory really will have been at the forefront of the response to Covid and so had less time for other issues, but apparently not - or not here.
ALUK - was there an option "no asthma review offered or provided"? Important in the scheme of things to know what percentage of forum members are not being offered necessary services. Also, was there an option, " review offered but I declined"?
Hi Poobah, unfortunately the poll system on here is quite limited and only gives 8 answer options with limited text so that was all I could add in, but yes in hindsight a no review offered option would have been good judging by all the feedback. Thanks for your contribution ☺️
I didn't think about it till I saw the posts either...just disappointing that services are so patchy. I'm very lucky and have a brilliant asthma nurse.
My review was a text survey… fortunately I am well..
I can't tick either of the boxes as none of them have happened since the first lockdown when I was shielding. I got a questionnaire to fill in and post back giving details of inhaler use and any symptoms with details of a YouTube video to watch to check inhaler technique.I haven't even had a review of my medication for 2 years either.
I had a very good review in person with the Advanced Practice Nurse who knows me very well. There was, at the moment, no need to update my Asthma Plan.
I've not had an asthma review in around three years. Because I have terminal cancer, I've had to assiduously shield at home and I've received all chemo/immunotherapy and undergone all bloodwork at home since the onset of the pandemic, with attention to other conditions falling by the wayside somewhat.
My hospice palliative care team also visits me at home to prevent unnecessary exposure to pathogens. I visit the hospital - rarely - only to undergo scans or surgery.
The oxycodone I've been prescribed to manage the tumour/spinal/pelvic pain seems to have helped my asthma as it apparently opens the airways (every cloud!)The picture is made rather more complex, though, by the breathlessness caused by heart failure (some of my chemo/immuno drugs pushed me into heart failure last year). It can be hard to tell whether episodes of breathlessness are caused by asthma or an insufficient cardiac ejection fraction.
I did have an informal chat with my GP, during which the topic of asthma arose incidentally. We agreed that a formal asthma review might be redundant at this point as it can be difficult to tell what is causing the periodic wheezing - my lungs or my heart (or both).
I am so sorry that you are suffering but glad to hear you have a caring GP.Obviously, you are having individual care and complex treatments therefore, your priorities will be different to someone who has a single diagnosis of Asthma .
I will keep you in my thoughts , take care.
Thank you for your kind message, mauschen . My GP actually broke the news of my terminal condition to me, although I had suspected for some time that might be the case. It was an emotional meeting and I do know that he was genuinely sorry. However, that doesn't detract from the fact that he failed to grant me a scan for six long months of immobility and pain - despite two previous cancer diagnoses and the many signs pointing to metastasis!
There have been multiple lapses in my care over the years: this is just one of those instances. I have been tempted to initiate litigation, but the aggression and confrontation this would doubtless involve aren't particularly appealing: I'm not sure I want to bow out in a haze of negativity!
I really feel for you. You must be on an emotional rollercoaster at the moment and have more to deal with than a complaint about your care and treatment.It’s important that from here on in, that your treatment is optimal and holistic. Perhaps sharing this with your GP will let him know that you are aware of what could have been done better in the past however, you might ask yourself if the outcome would have been any different?
Sometimes it helps to write things down. It can clear your mind for more pressing matters and remove any bitterness you might feel.
Every moment is your future and you want to be in the best frame of mind to enjoy this time in a positive way with those who love you.
Have you contacted MacMillan Nurses?
They are an excellent resource of support and can advise you on all sorts of things including finance related to your diagnosis.
Asthma is obviously the least of your worries however, we will all be here to support you in your journey.
Take care and may God bless you
Mauschen xx
So sorry to hear what you are going through DrivenSnow , I hope you are receiving excellent care and support with the hospice , these places have a excellent reputation normally thank goodness 🙏
Sending hugs xx
Thank you for your kind words, Keep-positive . My hospice has been a beacon of hope and warmth throughout this ordeal. I strongly feel there ought to be far more awareness about the existence and function of these fundamentally selfless and heroic establishments that service and nurture their communities with such sensitivity and diligence. I had no idea that mine would be ready to catch me as I fell - until I actually did.
Sending fond greetings! xXx
My father spent his last days in a Hospice and was cared for with compassion and kindness. He liked a wee Whisky and a roll up cigarette when he was sitting in the sensory garden. The volunteers in the garden were every bit as kind and respectful. Never at any point was he judged for being a smoker with small cell lung cancer or for enjoying a drink. The Hospice staff helped him to live until his last day and supported us as a family.You will also have a positive experience because they are experts in holistic care.
Thank you for taking the time to feedback. Wishing you all the best with your treatment(s). Do give us a ring if you want to have a chat about things 0300 2225800 🤗
Claire_ALUK , that's incredibly decent of you: thank you 🙏
I can't emphasise enough how helpful it is to know there are people, places and resources to whom/which I can turn should the need arise. It truly makes all the difference.
I'm very grateful ✨
HiNothing more to add than agree with most other posters…. 😐 Can’t tick any boxes I’m afraid as ‘what asthma review?’’ is not an option!
My surgery have made it very clear that they are not bothered about seeing me as I’m under tertiary care and therefore I’m ‘their’ problem. Trouble with that is that’s exactly what the tertiary hosp says too…. So I just bounce between them and end up being a and e ‘s problem!! System needs a serious looking at…. GPS get paid for reviews don’t they???🤔🤔
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I haven’t had a face to face review since before the pandemic, I have had e-questionnaire sent to me. I will get around to making an appointment, I am lucky my asthma is mild and well controlled.
My 'review' was via multiple choice questionnaire. No discussion at all.
I've stopped taking my Fostair inhaler as I'm managing my breathing by myself. I'm wondering whether anyone will notice - I don't believe anyone will.
Ooh sorry to hear this AirlsUnderrated. I wouldn't stop your preventer inhaler if you asthma - at least not without discussion with your GP. Do you want to give us a ring ? 0300 2225800 option 3 nurses
I’m very fortunate in having an excellent GP Surgery - and a first class consultant at the hospital’s respiratory department, where I have received great care ever since my initial diagnosis, in May 2019, of Late Onset Adult Asthma - very late, as I was 73 at the time LOL!! This was confirmed by the CT scan taken, because a pulmonary embolism had been suspected - (I carry a blood clotting gene). Ever since, I have received nothing but first class care by the hospital and my surgery. Throughout the pandemic they kindly contacted me regularly and, at the beginning of this year, I had my first ‘face to face’ appointment with my consultant, who arrange for me to have blood tests and an X-ray. I saw her in March, when a reshuffle of my medications was suggested, along with another round of respiratory tests. Just over a week ago, I saw her again and, following the results of the tests, it was decided to try another ‘tweak’ to my meds plus, to book CT scan to check things out - and compare it with the one taken three years ago. I will see her again in two months time.
she decided that another CT
That’s great news and of course should be the care everyone receives. Unfortunately, reading the posts , the majority of us are being left to our own devices.
What good care you are getting. Sadly this seems to ve the exception rather than the rule.
I haven’t been called for a review for 2 years.
I was back in Scotland permanently in December 2020 and attended my first review of Asthma and diffusion problems at the alveoli in January 2022. Only an Fev1 was conducted 78%. Due to chronic cough, the technician gave me salbutamol then rechecked Fev1 which was 81%. I felt so unwell at this time but no one seemed to care.The consultant said I didn’t need specialist review, a nurse review at the GP practice would suffice. He told me that my Fev1 was normal despite seeing me for the first time and not having the benefit of seeing my previous body plethysmograph because the GP didn’t forward it with the referral.
I asked how my diffusion issue would be managed and he said it wouldn’t be!? He said it was a known condition for which there was no cure and no treatment. I am a non smoker!
He said that my records of pulse oximetry 87-95% 02 were normal and if I had problems with asthma or breathing to simply turn up at A&E! (During a pandemic!!!)
If I wanted a DLCO, he recommended going private … unbelievable.
As a retired healthcare professional, I can take care of myself but someone without knowledge could be put in a very different situation.
I have had one asthma review with a nurse at the GP several years ago and a care plan was drawn up. Since then I have had tried different inhaler via GP (because of side effects) and then back to the original one as the second really didn't work so well for me. (I use fostair and ventolin). I keep a note of my peak flow when the asthma flares and simply increase and decrease the amount I take. At this time of year I react to pollens and use antihistamine (I have multiple allergies).
This forum and the website have been amazingly helpful. Last year I contacted the GP by phone to ask if I could try Montekulast and he agreed. I use airfilters at home. No review.
Used to have annual F2F asthma reviews but none since Covid started.
Thank you everyone for taking part and giving us some valuable information/feedback about this. I have passed this all on to the relevant teams in our charity as something to flag up again.
I have stage 4 emphysema as well as asthma and am supposed to have a review every 6 months. I had a telephone review in March, the first for 12 months, with a practice nurse I haven't had any dealings with before. She started by saying "we have you down as being housebound" and went straight on to say "on a scale of 1 to 5 how breathless are you walking up hill"🙄. The rest was a tick box exercise and not once did she ask how I was. Total waste of time.
Can't get a review only person I saw was the consultant at hospital.Now waiting for a ct scan in case he's missing something as xrays are clear.
As for gps no where even has asthma nurses haven't seen one for o er two years last time I saw an asthma nurse 2019 when I had chest infections after chest infections then in the end I ended up in hospital with pneumonia.Haven't seen an asthma nurse since.
The problem with my review was that the GP wouldn't renew my prescriptions till the review and I had to wait a month to get a telephone appointment. I had to pay privately to get prescriptions otherwise I would have been with out crucial asthma meds. This appointment did get moved forward. However the review was done by a doctor I have never met or talked to before. But I had seen my longterm consultant recently who had written to the practice to explain the steps we were taking over the next 6 months with regard to my Asthma. However the GP said despite having read the "very good letter" from my consultant, they had to complete the review in order to be able to prescribe. It's a questionaire which everyone knows well if they have had asthma for a long time. I answered all the questions before she asked them. This review was pointless and used up 15 mins of the doctors time which someone else probably needed more. But apparently the NHS insists that the prescriber follows up. My asthma is complicated and I take an unusual combination of medicines mostly only prescribed by consultants. I still don't have control a 100 percent of the time, but I have a wonderful consultant who always responds to emails etc.
Its a difficult situation because so many people can be helped by having a review. But there is no flexibility in the NHS system, so a lot of wasted appointments occur.
R
My surgery use a online form to decide if people need a review or not. In theory I think the idea of everyone filling in the form is great, they can catch people who's asthma is less controlled than they believe and who may not have made an appointment for a review. In practice, I really don't agree with how it's used. I'm wondering if this is just my surgery or is a common approach?
They use a adult asthma control test which again, I'm sure picks up people who wouldn't have been picked up on having poor control without it so that's great. But it definitely doesn't pick up on everyone with bad asthma control. I've had asthma since I was a baby and so my asthma symptoms aren't as worrying and therefore as obvious as they might be had I not had asthma my entire life. I'm not stopped by doing most things until my asthma is incredibly bad because I learnt to do all these things with asthma symptoms? I'm sure If you've always been able to breathe well and then one day you can't when you are hoovering that would stop you from hoovering! But what about when those symptoms are the norm to you and that's just how you do things? I'm not going to stop hoovering because I'm breathless! I probably won't even notice I'm breathless because I usually am!
As for how often you use your blue inhaler (I'm going to just mention here that I know how bad this is OK!! I'm sorry I know i shouldn't do this!!!) But I've been without my ventolin enough times and had been by the age of 5??6??? That I know how to slow my breathing and regain control of it when my airways are tight. It's not as effective as my ventolin and I know it's not going to work every time but I can usually regain enough control by sitting down and concentrating on my breathing that I don't bother to take it half the time. I know I should but the discomfort isn't bad enough to make going through my bag for my inhaler worth it. I 100% wouldn't encourage anyone to do this and I probably can only do it well enough to be worth it in part as I've got good control of my breathing from singing/speaking on stage all my life but I know that I should be using my ventolin a lot more than i do.
Then they ask about it waking you up at night and honestly? My asthma has no chance of waking me. It didn't wake me up with pneumonia or whooping cough. It stops me sleeping sometimes but I'm such a deep sleeper that no matter how bad my asthma is that question is never going to be relevant. I've slept through fire alarms.
Anyway the end result is every time this quiz says my asthma is a lot better controlled than it is. I then have to beg for a review and explain that despite what it says my asthma is not controlled and hasn't been for any of my adult life. Then I go in to the review and they do another version of the same quiz! At which point I explain the above. Then they take my peak flow and its great for my height as it always is even if I'm ill (I think this is pretty normal for people who can sing and speak on stage ect? I've seen the NHS sending asthmatics to singing clubs so it must do some good and other people with good peak flows despite symptoms who i speak to always end up being oboe players or singers or something. So I explain it's always that good and that it is that good if I'm taking my steroid inhaler or not
And then the nurse asks about how often I take it and so I explain that I really try with compliance but whatever I do (alarm, apps, charts, putting the inhaler in my way, in each room, in my bed, by my toothbrush) I've never been able to consistently take it as I've got a mental health condition that causes executive dysfunction which makes things like that incredibly difficult (I also forget meals ect) and when they hear about the compliance they just stop listening and blame everything on that and try and guilt me in to taking it more regularly which works for 3 weeks and then inevitably I stop being so regular with it, till my symptoms play up bad enough I can't ignore them, then I'm good for 3 weeks and so on.
I think what I'm saying is the NHS really need to stop with these one size fits all approaches. I can't be the only one who experiences any one of these things and as for the compliance, I've asked for help so many times and all they do is tell me to try the chart/alarm/putting it by my toothbrush thing again or try and guilt me in to it! If it had been a few months, I'd see their point, there must be something I can do, but I've been on the same inhaler for 10 years and have never once managed to take it consistently as they dose it. Isn't part of asthma control making a plan you are actually able to follow? If I tell them that having to take the inhaler consistently is something no matter how much I try, I'm not able to do, then surely, at that point we can start looking at alternatives to placing all of the hope of control on one inhaler? Despite it being so long, I've never once had my asthma reliably controlled on this inhaler and yet, no one has been willing to look at any other options until I tell them I'm taking it consistently. I don't want to lie to the people who might be able to help me? But what do they do for all the other people with problems with executive functioning? Are those people just lying at their reviews and saying they take their inhalers properly? Several times they've actually reduced the dose of my inhaler, making me symptomatic during my good compliance weeks and even more symptomatic when I'm taking it sporadically as 'if you aren't taking it all the time at this dose then you can be on a lower dose all the time'. I have spoken to the mental health team too but they tell me to talk to the asthma team.
Anyway I didn't mean to take over with a anecdote I just wanted to say that I don't think the review system works at the moment and that it works particularly badly for those with mental health/neurodevelopmental issues that affect their compliance as the process is really 'one size fits all'
Oh I also meant to say that the notes never reflect what I've said and always seem to say that I've said my asthma is well enough controlled that it presumably doesn't flag up anywhere. It just seems to be a box ticking exercise.
There's also a worrying lack of concern about side effects and the long term impact of inhalers. I'm constantly told that the steroids don't enter your whole system which isn't even right! Despite having been on high dose inhaled steroids on and off my whole life (the impact after 50 years on them being a bit different to 12 months never seems to be considered.
Also there's no knowledge of other conditions and how they may impact on asthma. I've always had multiple allergic conditions and it's never been mentioned that if I took medications that were more systematic, I could be taking one medication for 3 conditions and reduce the amount of 'non systematic' steroids. (I've never been offered a trial so I've no idea if it would work but montelukast has the potential to address atopic skin issues (itching), allergic rhinitis and asthma and yet its never been mentioned as an option, rather I've been on topical/inhaled steroids for each condition for most of my life with each of them being steadily increased as I've never reached any state of control over any of my conditions.) After progressing from 2 atopic conditions as a baby to pretty much any allergic symptom you can think of and worsening anaphalactic type reactions to food, I finally saw a private allergy consultant for my food reactions recently and he mentioned that my asthma/skin/sinus/eye symptoms may well be affected by medications for my gi allergy symptoms. Sure enough, I'm finally gaining control of my eczema after starting a combination of h2 and h1 antihistamines, my steadily increasing eosinophils are reducing for the first time ever and I'm now wondering about medications like montelukast for my asthma which may be able to reduce my overall steroid load. I can't believe the link was never made before and I've never been referred to secondary care where they may have made this link? That alone is a major oversight and I very much doubt I'm the only one in this position but I've also found that nobody in my surgery has ever been able to explain the difference between heart and asthma symptoms (chest pain, shortening of breath) and how to know which is to blame. In fact when I asked if my tachycardia may be to blame for my chest pain rather than my asthma, the nurse took me off all asthma medication cold turkey as I'd apparently convinced her I never had asthma from the start! Luckily I happened to have a gp appointment for a seperate issue a few weeks in to this and he immediately told me to start them again and explained that if my inhaler made the chest pain go away, it was my asthma and not at all heart related. cardiology also have no idea about asthma chest pain/shortness of breath. These can't be uncommon comorbities. Maybe I'm just unlucky or stupid for not figuring it out myself but I honestly feel that the separation and ring fencing of even related conditions is probably having a severe impact on NHS asthma care. Why are the impact of allergies on asthma not looked at until you reach secondary care and once someone reaches mulriple uncontrolled atopic conditions all requiring steroids, shouldn't they be being assesed by the allergy clinic? Considering the increase in anaphalaxis mortality for those with asthma and the similarities in presentation between anaphalaxis and am asthma attack for those unaware, i think we should be paying more attention to allergic asthmatics who may have food allergies and be warning them of the differences.
plus, why are people with lifelong badly controlled asthma requiring high dose dual inhalers for decades and multiple antibiotics prescriptions each year not being automatically sent to secondary care?
I think we should be focusing on efficiency in those on multiple prescriptions for atopic conditions and be trying to make sure people are on as low a dose of steroids as possible. I know that the idea is always to step down inhalers but what about all the people who never achieve proper control of their asthma in primary care and yet are not referred on or even made aware they can see someone other than the surgery asthma nurse and that there may be other options to optimise their treatment?
Mine wasn't even a phone call it was a text questionnaire! Then someone from the surgery a week later texted back and said "sorry your struggling but your under the hospital for support" so yep very helpful.
My daughter was sent a text message to fill in an asthma control test and send them the score which was 19, then she was sent a letter to make a phone appointment which was almost 2 weeks later by which time her asthma was more controlled. They didn't ask about her peak flows or her asthma plan. Nor give any advice about winter which we did say was when she's bad and has multiple GP visits and some trips to A&E
Hi AJP2, sorry to hear this, you are very welcome to ring the helpline for any advice. 0300 2225800 or WhatsApp us 07378 606 728 Mon-Fri 0915-5
