Hi I'm a bit confused as to what is happening at my GP practise & could do with some advice please.
In October I had a chest infection & had 2 courses of Doxycycline after being seen by an advanced nurse practitioner. During the appointment she asked if I had used my rescue inhaler which is quite a new one given to me at my previous Asthma review earlier this year. Its a Salamol Easy Breath. I told her I had used it but didn't think it was doing much to help. She said she would get an Asthma Nurse to contact me.
Following this I was sent an appointment with a COPD Nurse. I presumed that was just the same thing & attended the appointment. I was told immediately that it was my annual COPD Review. I told her that I didn't have COPD & that I had never had a review previously. She looked at my records & said she could see I had Bronchiectasis & it was my review for that. I told her that my Bronchiectasis was diagnosed from a CT scan monitoring lung nodules in 2020 & that I had not been seen at hospital for it other than a spirometry test in 2021 & it was not being treated & that I had been discharged from respiratory being told to treat it as Asthma (that's in my hospital letter). She just continued saying she had to do a review & that's why I was there. I told her I didn't want or need a review & that I was supposed to see my Asthma Nurse. She asked me several questions including how far I could walk. I told her I could manage to walk to our local village centre to which she replied that she didn't know how far that was so left the care plan blank. She then mentioned my COPD Nurse at the hospital & I told her again that I didn't have a consultant. We were going in circles so I gave up. She then said she would prescribe a new inhaler. I was annoyed & when I went home I looked on the NHS App & saw that I had a care plan in place. There were several discrepancies in the care plan. Its says that I refused Pulmonary Rehabilitation & that I had never smoked. I am an ex smoker but havn't smoked for over 30 years. She had never mentioned Pulmonary Rehabilitaion so not sure how I had declined it. A few days later I received my prescription & its an Incruse Elipta Inhaler which I have never heard of. I'm not sure wether to take it or not. I see that my Salbutamol inhaler has been removed from my repeat prescription.
I know I need to write to the surgery but unsure what I should be saying or asking. It all just seems a jumbled mess. any suggestion welcome please.
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Otto11
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Crikey are you sure we haven't got the same doctors!!! You should first of all go to your doctors and complain that your care package (ha,ha) is confusing and your not exactly sure what your being treated for and would like to see either a doctor or the respiratory nurse to go through your notes, which you are entitled to do so, and work out a proper treatment plan as your not psychic. You have to put your foot down as sometimes they have a can't be bothered attitude. I can't usually get in to see my favourite doctor as she is always busy 😕 let us know how you get on chook 😉
Yes definitely you need to see a doctor and ask for clarification. I would write down all the things you have told us, emphasising that you have bronchiectasis, not COPD. I can't see why you should not have a Salamol or Ventolin inhaler for emergencies. Just about everyone else on this forum has one. Good luck.
That seems to be standard practice these days. The medics write on our records what they think should happen forgetting that we can get to see it using our apps now. Mellywelly has given you excellent advice. I had to put up with all that shambles and ended up more or less telling the respiratory nurse what I wanted from information gained here. Still here at 93!😀
that is one big confusing mess! Anybody with asthma should have a reliever inhaler be that Ventolin or Salamol. With bronchiectasis you should have been seen by a respiratory physiotherapist to show you lung clearance techniques to stop the mucous sitting in your lungs encouraging infections! Bronchiectasis is NOT COPD, but not many GPs or practice nurses know enough about it. If it is any help, I am on Incruse Ellipta and it is a good, long lasting inhaler to help relax thr muscles in your lungs and stop the airways tightening up......worth trying! Also I would assume at some point the hospital will want another CT scan to see what your nodules are up to?? Good luck sorting it out, but you often have to stand up for yourself with poor surgery staff.
So sad although sadly all very common these days. It makes managing our own health care so stressful and more relevant it is totally unnecessarily and risky too.
Can I advise the following ( if you have the strength and health to tackle it. ) Not sure where you are in UK so organisations may vary.
Yes write to the practice manager at the surgery to state your case. Make a request for what you need. ie appt with GP etc to sort this out. You can ask for a double appointment to have longer than the 10 minutes. Make so notes and take them with you- you have a bit to sort out with them.
Report to the Patient Participation Group at the surgery of the poor state of Respiratory care ( you just need to says it has been very poorly managed rather than give specific details ) Usually contact details are on the surgery website.
Report to Healthwatch - find them on the internet.
Sincerely hope that you get the service and support you need.
The Asthma Lung helpline could be helpful too if you want to call them.
Personally I would write something starting with "Ring a ring of roses" as it would appear tat your surgery is doing something similar. And then ask to see the senior GP not just anybody wo hppens to be triddling their thumbs. Sometimes so-called experts need to be told they are spouting absolute nonsense. My wife had years of being told she had asthma and all manner of other lung problems when in fact she has bronchiectasis. She now has a wonderful consultant, albeit 100 miles away, who knows what she is talking about and will put in place as much help as she can. Have a good day, stay positive, Chris.
Hi, I have COPD (emphysema) diagnosed in 2017 but nothing happened until 2019 basically they forgot about me and then it was a panic to get me a inhaler and spirometry test and when they did they told me I didn’t have COPD! . I then got all the relevant information and sent a very strong email (firm but fair) and the a doctor called and took down everything I said and a few days later my records were changed. I had a review this year over the phone and they marked me down as 6/40 when I found the test online and did it myself I scored 27/40 told them and they changed it. It’s your body and you know best just tell them how you feel and what you need/ want and they should help you that’s what they’re there for to help. Good luck. Kevin
I went through the same thing at my surgery. The problem is the asthma nurse didn't have a clue about bronchiectasis so continued with her asthma checks. I ended up making an appointment with my gp and told her I didn't have asthma and to please take me of the asthma check ups which she did and referred me to the hospital. Sadly the respiratory doctor didn't have a clue either and discharged me saying there was nothing more he could do for me. In the end I looked for a bronchiectasis specialist and asked for a referral to see her. It's quite a trek to the hospital but well worth it. She has been great with me and understands my condition better than others I have seen. This doctor did a whole range of tests and found I had overlap asthma and has changed my inhaler to Fostair and have been so much better on this as it has reduced the amount of mucus I make which really helps. Don't be fobbed of my your gp nurse, take control and push for what you need. Good luck x
I was recently diagnosed with asthma having previously been diagnosed with COPD, then I received a letter from the consultant saying that I did have asthma but probably a COPD overlap as well.
The consultant changed my inhaler which made things much worse so I phoned my GP surgery to get an appointment to see the asthma nurse, only to be told that there were none available for over a month. The helpful receptionist then said perhaps I could see the COPD nurse instead, appointment was available in 3 days?
I never realised that they were two separate nurses for what is, similar conditions. To top it off, neither of them perform spirometry tests, a separate nurse comes in once a week to do those! No wonder the NHS is in such a state!
I would strongly suggest that you insist on a spirometry test before doing anything further. If your GP refuses, then contact your local community respiratory team. Even if they are not allowed to perform one then they can put you onto a local charity that will do it. Failing all else, demand to have a second opinion from your GP as your not satisfied with your diagnosis. The more that I learn about respiratory services, the more I realise that it really is a lottery about how much support you get.
Hello, I have been reflecting on your post and my earlier response to you.
When you approach the surgery for some much needed clarity about this current muddle up. one thing you could ask them about is which conditions you are coded for ? Coding allows conditions to be coded which attracts the right resources and finance to be directed towards services and care to meet the needs of the patient.
You do need a definitive diagnosis don't you ? It would be hard to be confident and move forward without it. (This could of course include all 3 conditions which I have ) I hope you feel able to be assertive when seeking the clarity you need.
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