Asthma nurses: Hi! Am I the only one... - Asthma UK communi...

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Asthma nurses

Wheezycat profile image

Hi! Am I the only one with this feeling? Since I was diagnosed with asthma, back early 2015 I have had two subsequent reviews. The last one, in April, I remember talking about how I was failing to recognise my own difficulties. By that time it had been brought to my attention quite forcibly by a friend of mine. She (she is a doctor) was talking of uncontrolled asthma. Our daughter had also dropped hints for a while that I had symptom that I didn't notice. The nurse agreed that can happen. However, it did not trigger her into checking if I had any symptoms, even by just asking me. With hindsight I was coughing a lot, but that wasn't discussed. Inhaler technique wasn't checked. I had never been given an asthma action plan. I got my first one in he hospital, where I ended up for four days with an acute asthma attack back in June. Now I am still on high (I think) doses of inhalers. The hospital firmly told me to stay on them for three months. But I do need to start looking to reducing the doses in September, I also need to discover more about triggers, and I am working on recognising my own symptoms. I am good at present, but still reeling from the asthma attack and having to learn about this chronic condition as I have not before realised how affected I am by it.

I am now feeling highly desillusioned by the surgery asthma nurses (on their list of specialist nurses, not a single one mention asthma as a speciality). The one I met at the hospital was good! I am so desillusioned I am wondering about the point of them, yet I certainly by far would prefer to work in partnership with someone to reduce medication, and, as it were, learn the shape of my condition.

Does anyone else feel this way?

15 Replies

I don't have asthma but my son does, I feel that I know more than asthma nurse as my son as CVA so as far as she was concerned no wheeze no asthma! Yet my son been coughing since may this year with breathlessness when just going upstairs, I don't think the asthma nurse at my surgery is worthy of that title, all she does is peak flow and oxygen levels, which I think is pointless because unless you're having a full on asthma attack, most asthmatic can manage to keep blood oxygen levels near normal, plus peak flow, which always seem to be the case with my son yet he's clearly got out of control asthma. The respiratory nurse is far more helpful just got to be referred which is taking forever this time round, the only thing is they sign you off and you go back to own nurse, who I am refusing to see! She doesn't recognise CVA only classic asthma to textbook for my son symptoms.

I am in a similar situation and share your frustration. The first time I knew I had asthma was when I was submitted into ICU for near fatal attack!!!

That was 4 years ago.

Since then I've been on my own journey trying to identify what triggers my asthma - still not sure really.

I do know winter is my vulnerable time and a simple cold can set me off terribly. Yet only last week (full summer) my asthma has been triggered but I don't know why.

I have requested allergy tests which have shown no pollen, hair and dust allergies.

Asthma check ups for me tend to be pointless and seem to be a tick box exercise. My asthma nurse told me that I can reduce my medication yet my doctor said absolutely not to reduce!!

Asthma for me seem very complex and as I only recently have been diagnosed (never suffered as a child) I have been desperate for information and support.

It varies just like everything with asthma! I recently went along to my annual asthma review with the 'asthma nurse' thinking it would be a waste of time. Had a new nurse who was fantastic. Understood everything, put me on a new inhaler, suggested referring me to respiratory consultant... I couldn't believe it.

Wheezycat profile image
Wheezycat in reply to angievere

That gives me some hope! Last time I saw an asthma nurse, it turns out, I realised afterwards, that I saw a practice nurse! She seemed good! I think! Or at least she was shocked I never had an asthma action plan.

I am, in fact, seeing my GP about this very issue. My confidence in myself, knowing and understanding what is going on with me, has been properly shaken, and I would just feel so much better that am with someone who has a good handle on it.

My plan, when I see the nurse eventually, will be to take the asthma UK review plan along, and literally say (if it seems needed) "Now, this is what we are going to do today". I also know I want to reduce very, very carefully, on the lines of one puff per week and then keep a close eye on my PEF while I am reducing.

angievere profile image
angievere in reply to Wheezycat

I never had an asthma plan but I think they are a good idea. Good luck and I hope things improve for you.

Wheezycat profile image
Wheezycat in reply to angievere

I have realised since my admission to hospital we are all meant to have one! It think, but not totally sure, that that is what it says in NICE guidelines. You could always download the Asthma UK one and take it along to your next review. I would have found it a great help when I was deteriorating before being admitted to hospital.

angievere profile image
angievere in reply to Wheezycat

Thanks Wheezycat. x

I think sometimes with asthma nurses, like finding a good doctor, its pot luck and lots of changing surgeries. I'm quite lucky that my surgery has both an asthma doctor and a nurse, and that they're both good. If no one is specialised at your surgery you could just ask to see someone else about it or look at changing surgery. It's important you get the help to keep on top of it x x

Can I just ask, do you have a peak flow Meter to keep an eye on your peak flow readings? This, in conjunction with your action plan will help you get control of your Asthma symptoms. The idea is if you are showing a downward trend, then you need to see in your case, your GP. so, I guess the Asthma Nurse did not do a Spirometry Test? I believe you should have a Spirometry Test once a year. This summer has been bad for most people with lung conditions, because of the muggy humid air, which also triggers mould spores. Warm humid air sure makes my Asthma worse, which is why I have one of those portable air conditioners and loads of fans, both hand held little ones, and larger ones. Yes, Respiratory Nurses are really useful people to get referred to, and also Asthma/allergy specialist Consultant. Ask your GP for a referral,although the waiting list is likely to be half a year. You need to insist on an upto date Action Plan, together with your peak flow Meter. Are you using a spacer with your inhalers? You will get twice as much down into your lungs. Hope some of this helps. I have had Asthma over 50 years, so maybe able to help a little.

Wheezycat profile image
Wheezycat in reply to WheezyAnne

Yes, I do have a peak flow meter, well, two of them! I was given one in hospital and they won't 'recycle' them to other patients, so now I have two. Originally I had a spirometer test, and, from memory, also when I had a review with that nurse. Not the last time I had a review though. And, yes, I have indeed discovered the wonders of the spacers!! I had to use one with clenil, as it invariably makes me cough, even with the spacer, just not quite so bad, but I have also realised how much more effective ventolin is with one. I got myself an aerospacer (?name), as it is small enough to carry around with me together with my ventolin.

WheezyAnne profile image
WheezyAnne in reply to Wheezycat

If your Spirometry was a year ago, I would ask the Asthma Nurse to repeat it, and to let you know the results, compared to last year. All In accordance with NICE guidelines. How often do you clean your spacer? The leaflets enclosed say every week. however, I read somewhere that as we need the static to build up, cleaning every week is too often, and we don't get the best benefit. Not sure I explained that right...but hopefully it makes sense. Once a month was suggested.

Wheezycat profile image
Wheezycat in reply to WheezyAnne

I don't currently use the spacer much, since my massive increase in preventer (Symbicort), and general improvement from that treatment. I do understand what you say about static. My main concern is to do a well planned reduction in inhaler. Asking for the spirometry is probably a very good idea!

HI WHEEZY AT. l could go on for hours about this. The advice is "see your GP or your chemist" oh! First I mentioned it to two different chemist's and was offered off the shelf medicine which I had already been using. Next my GP's "what do you think it is " & " try this inhaler ". I changed practice and the new doctor was also too rushed to examine me properly. Two week's ago l ended up in hospital, after nearly 4 hours l was given antibiotics and told to see my GP, happy day's. I wish those expert's on TV would join the real world. I have an appointment with the GP this week and am not moving until I get proper treatment. :-(((

it always amazes me that people like you are not looked after properly once they are diagnosed with the very least they should refer you to see an asthma a review the main thing they should do is review your inhaler technique to make sure you are taking it for triggers.. there are so many factors that you may never know everything that triggers an attack it could be a combination of things... and you can't get tested for everything... but if you feel wheezy after eating or touching something.. then best avoid it... all a trial and error thing....if you have another review demand an action plan... you NEED one...its not something you play around with... you need to know what to do when your asthma worsens or if you have an attack what to do.... whether take a preventer and double dose or steroids... talk to your GP about options and that you need to speak to an asthma nurse whether they have one at your GP surgery or a referral to one at your local hospital....good luck! :D

But also check symptoms, ideally do a spirometry test, and check your asthma action plan is up to date.

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