I saw a consultant this week and gathered from her reaction that the asthma care at my GP practice is really poor. From what I read on AUK website it is rather common, unfortunately, but I'm curious as to how others have dealt with this and what their experiences were.
The nurse that was assigned to me initially had been adamant that I was not suffering from asthma, despite my obvious improvement on steroid inhalers. Her words were that I 'don't fit the criteria' (no big variation in peak flow, no night time symptoms, spirometry normal). I then saw a GP who said that if I responded to a trial of treatment then I did have asthma. I showed him some concern at the time about the amount of steroid I was getting from a double dose of clenil (ha!) and asked him if I could have a combi inhaler so I could have a smaller dose of steroid. He put me on Seretide 125 and said that was a tiny dose of steroid. I was told to see a nurse for a review in a month and when I went to see her she said the seretide dose I was on was twice as strong as the clenil dose I was on before (doh!). By then I developed a cold and was told to stay on that dose until things calmed down. So they never did and I was put on a high dose of Symbicort, and a nasal spray (for rhinitis). I won't bore you with all the details, but eventually I was put on a short course of pred by the first nurse that had said I didn't have asthma as she still didn't think I did. I still didn't improve fully and she said it was definitely not asthma, go back to your GP. GP then said he wasn't sure but that he would continue to treat me for asthma. By then I was begging to see a specialist and was still not given a referral. Eventually I had to go in and be quite assertive and say I wanted a private referral as I felt so uneasy at having quite bad sob and being treated for something they were not sure I had.
Consultant's eyes opened wide in surprise as I related these things to her and she's now transferring my care to her team at the hospital. She was very reassuring and we have a definite plan of action in terms of drugs. Am now back on symbicort and was put on bricanyl instead of ventolin. Must carry on with nasal spray but told to stop antihistamines I had been put on as apparently they do nothing for asthma. We'll review again in 3 months and might be put on Montelukast then as I am fairly atopic. She said to not bother with peak flows as they are not a good tool for me (seems like my small airways are more affected than my large ones).
Did any of you have a similar experience? Are you now under the care of a specialist? Why are general nurses called 'asthma nurses' if they evidently don't receive enough training in asthma??? Why are GPs so out of touch with asthma drugs that they think they are prescribing a lower dose of steroid than they actually are? Why is a GP unsure of a diagnosis and still unwilling to refer? I am lucky that my asthma is not that bad (although it was allowed to get far too uncontrolled for my liking!) but I wonder how many severe asthma sufferers are managed similarly and how many severe attacks could have been prevented by better care.
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Hi ,sorry to hear you have had such poor management and become poorly in the process. Not much fun not to mention dangerous. Glad you pushed for a referral and have eventually got thge care you needed. I have had experience recently too of asthma care in my gp practice I was not too happy with. I've been asthmatic for 33 years , since I was 5 so diagnosis was never my issue however I started having increasing sob and my normal clenil was not making any difference the way it usually wld when I double my dose. So asthma practice nurse put me on seretide 125 .I came off clenil completely as I thought that was what I had to do but I reacted badly to it so ended up off that then on a course of pred but was not given clear instructions as to whether to go back on clenil and what dose to take during this time. Unfortunately I then had a nasty acute attack and ended up in a & e. The day before I had been at my gp re my worsening asthma symptoms and she had put me on montelukast and given me an atrovent MDI inhaler . I came off my clenil again at this stage thinking that was the right thing to do and when I had my acute attack I started using the atrovent to multidose with ......shld have been using my salbutomol!! I am wondering whether all the wrong/lack of advice actually caused my attack! Like you I have very little variation in my peak flow but nurse and gp couldn't tell me why! I found the answer on here! So yes I also question their level of specialist training if indeed they have any, I am seeing a specialist in 3 weeks and hope to get some answers then too.
Oh no, sounds like you had a very rough time of it! I hope you get on better with the specialist. I think that other than lack of proper training, the issue with GPs and nurses is that they have such a short consultation time. Then important things like what inhaler to take whilst on pred get forgotten about because to them it's an everyday thing, whereas for us it's an exacerbation and a big deal. Thankfully I had read the blurb on here about pred and knew I had to carry on using an inhaler, so I asked the nurse about doses etc, otherwise she wouldn't have told me either. Pred didn't actually make that much difference for me which is what confused the diagnosis, although it was a low dose: 20mg. I have found the AUK asthma nurses invaluable. It was thanks to them that I knew the care I was getting wasn't good enough and to keep insisting. Interesting that Seretide didn't do it for you either. The consultant said it's way way stronger than clenil.
It's worth remembering that the job of a GP isn't to be a specialist - they aren't trained to be specialists. However what they should do, if unsure, is to refer on appropriately. If they don't do that then it is frustrating and I understand why you are fed up. GP's receive training in a vast array of disciplines over three years, after completing six years of medical training. Compare this to a specialist who has up to a further seven years of specialist training after the first six years, depending on the discipline they choose.
Likewise practice nurses are general trained nurses, with training in a wide variety of areas upon qualifying - nurse training does not make you a specialist. Some nurses, including practice nurses may choose to do post graduate training in specialist areas, and this can include respiratory nursing. My asthma nurse had done this. But this won't just be down to their choice, it will be down to training opportunities and funding which will not be in their control.
I say all that both as a qualified nurse and the wife of a psychiatrist who is retraining as a GP...
Hi
Sorry to hear you have had a rough time. I have also had terrible experiences with asthma that does not show the typical signs and symptoms and found this board very useful at the time. However, I have also had very good experiences of general practice and slowly (through trial and error) have built up a good relationship with a few GPs, nurses and cons. I really respect the GP I regularly see as he is not a specialist but is willing to think outside the box and then say, I am not comfortable on the next stage you need to see a specialist. Like Nursefurby says, it is called general practice for a reason.
Hopefully the specialist will be able to help you as they have more specialist training but also access to more equipment. My diagnosis of asthma was questioned due to peak flow readings being predicted but if you do other lung function tests a totally different picture is painted. If you need to see your GP again, is there another GP/nurse you could see? I don't think my GP practice on the whole is great in dealing with asthma but the individuals I see are excellent.
Oh I really do appreciate the difficulties of general practice. Really, I do. But I think for a GP to say he's not sure of a diagnosis and take his time referring is very unsettling. As for the nurse, I think she should have been given more training in asthma if she is the main point of contact for asthma patients in the surgery. I think she was far too attached to guidelines and didn't consider my response to treatment enough, seeing as trial of treatment is a common diagnostic tool. I responded really well to clenil but she took me off it and said I didn't have asthma because of my peak flow. Surely, if she's going to have the responsibility of diagnosing asthma, she should have been trained to know that not all patients with asthma have a variable peak flow? I am considering writing to the practice manager about this. I understand funding is an issue, but surely it's more expensive all round having asthma patients landing in A&E, is it not?
Mine is a large practice with several GPs and nurses and in time I'll learn which of these are the best people to see. There is one GP I really like. He takes his time, listens and discusses the treatment plan. I like that. But he's really hard to see. Normally I'd have to wait around 10 days to get an appointment with him. And when you're feeling unwell, feeling that your symptoms are deteriorating, you just want to see the first doctor that'll see you, don't you?
For me it's also been a lot do with learning about asthma. How it affects me and understanding what I can and can't do, seeing I've not lived with this very long - just over a year. So it's good to know which drugs I respond well to and those that I don't. Also learning that taking a peak flow is quite pointless in my case. What things to avoid (bubble bath and air freshener are big no-nos for me). In time I'll also learn how to prepare for autumn/winter as these are definitely difficult times of the year. I'd also love to know what to do during a viral infection to stop my asthma going downhill as it did this time. But I realise it'll take time and that'll I'll have to be patient. A virtue I do not possess, unfortunately!
If patience is a virtue, then I'm not very virtuous either it's hard to be patient sometimes when you're feeling unwell and it impacts on your life.
If patience is a virtue, then I'm not very virtuous either it's hard to be patient sometimes when you're feeling unwell and it impacts on your life.
definitely!
I was sent a letter for a asthma review at my doctors.
When I went she said if take 6 puffs of reliever go AnE. She then read my notes and could see I was on lots of asthma treatment and under Severe asthma unit and a consultant.
She said she was not trained enough for that just a reliever and preventer and couldn't understand why they sent a letter to see her.
She was lovely and did my BP that was high as had a chest infection and on steroids and she refured me to my doctor.
My BP is ok he said but I brought a home BP monitor to keep an eye it when asthma is bad so
was really glad the nurse picked up my BP was high...lol glynis
I don't see the asthma nurse either Glynis - no point, as I am seen on average every six weeks at specialist lung hospital. Would be a waste of everyone's time!
Im seen every 3 months and awaiting for a apt to respatry physio so not sure what they will be doing.. do you know nursefurby ...lol glynis
Well, the resp physios at Papworth are great, they have taught me breathing techniques to clear my chest without getting exhausted, and also taught me diaphragmatic breathing to reduce air hunger (because my rib age is fixed and doesn't move when I breathe, so I have to breathe with my stomach/diaphragm). They have also taught me to use an acapella device to help mobilise secretions and trialled hypertonic and normal saline in my nebuliser to reduce and shift secretions. Plus supporting me to exercise safely. My experience of them has been really good I don't just have asthma tho, I also have severe restrictive lung disease due to thoracic scoliosis. I hope you find them helpful too
Thank you nurse furby ....lol glynis
Nursefurby, totally agree with all you said re gp's not being specialists. I also work in the health service {one of the AHP disciplines, hospital based } and appreciate what GPs do and how difficult their job must be. It must be so difficult when they have such short appointment times and small details can get forgotten under pressure too even when they do have the answers!. My gp practice is generally very good and are happy to refer when they feel they cannot take things any further. I'm actually annoyed with myself for not knowing better! You'd think I'd have known having had asthma nearly all my life but just goes to show what happens when you hit new b realms with your condition lol!
Hope hubby is enjoying his training? X
Sorry, you are having a difficult time getting care you feel confident in.
I think a LOT depends on the GP. A really good GP is a terrific ally in dealing with asthma, or I imagine, any other chronic condition, especially one that is poorly controlled.
The really good GP's do have a speciality - understanding that the body is a complex combination of systems and keeping track of how one system is affecting the other.
I have asthma that has been out of control for over a year and little by little it is affecting much more than just my lungs: For example, excess work breathing from time to time aggravates a pinched nerve in my neck, long term pred use is possibly having an effect on blood sugar, bones, and cholesterol.
My GP is really good at looking at the big picture, i.e. how my asthma is affecting my body as a whole. I find it is often a good idea to check in with my GP before I accept instructions from a specialist or from people in A&E. Specialists can get so focused on one system they forget the others. A&E folk mean well, but often are so focused on the acute problem that they also miss the big picture. For example, when I saw an orthopedist last fall for the pinched nerve, he prescribed drugs that are contra-indicated in asthma. One A&E doctor who wasn't familiar with cough predominant asthma tried to prescribe me cough suppressent on discharge - also often not a good idea in asthma. My cough is a functional cough that helps me get rid of trapped air. Fortunately I already knew I shouldn't be taking those drugs (NSAID for pain, diazapam to relax muscles, codeine to suppress cough). But if I hadn't known that already, checking with my GP would have helped me avoid potential problems.
My GP is also the first one to see me when my asthma is worse than usual - so he knows me quite well and often is much more aware of what I need to be as healthy as possible than is the pulmonologist. He also takes the time to see how asthma is affecting me as a person and not just as a collection of body parts and systems. That's important to me because I think health is much more than just the body. Being ill is just the starting point - how I deal with it makes a huge difference in my quality of life.
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