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 😉
Thanks. Our GP's is a nightmare & I think this is most of the problem. It's almost impossible to get an appointment with any doctor let alone one you know or knows you. The waiting room is always empty. The problem is I have no one to put my foot down to. I asked at reception after this appointment as I was so annoyed if I could speak to a Dr I do see regularly but the receptionist said she had never heard of her. I repeated her name but that didnt help. She said she was new. Ok. She just sat there looking at me so I asked her to go and ask someone who would know. She came back & told me no one knows then continued to tell me that the receptionists didn't work for the Dr's therefore didn't know any of the GP's names. I will stop there but you get the gist I was left speechless & I felt I was on planet Zog!!!!! I asked if I could speak to the Practise Manager to be told we don't currently have one! I just left at that point as it was hopeless. I have however written in on line to ask for an appointment with my usual Dr. Watch this space!
Hi I had numerous bad experiences with my old doctors surgery (I've now changed surgery)never any appointments told by receptionist to just go to urgent care or A&E 😡 new doctors seem to be more understanding of someone with bronchiectasis .long my it last
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.
Thanks this is part of the problem as my hospital letter suggests that the Bronchiectasis that showed on the CT is mild & should be treated as Asthma. I have never been seen by a consultant since this incidental find scanning for monitoring Lung Nodules. So do I have Bronchiectasis or not? The nurse who did this annual review said that Bronchiectasis comes under the same umbrella so are classed as COPD. They have replaced my Salbutamol inhaler with this new one which she said would dry up the mucous. Here's another confusion as I thought you were supposed to thin the mucous so you could cough it up. I'm really confused. I have written in on line for an appointment with a GP so will have to wait & see if they can fathom it out.
You are definitely supposed to cough up mucus if you have bronchiectasis. I was diagnosed with asthma years ago. It was mild and didn't usually bother me. Then I started getting chest infections and was diagnosed with bronch. I still had annual asthma reviews at my surgery, because no-one seemed to know anything about bronch. One year the asthma nurse said he could give me a new inhaler, Trelegy, which would dry up the mucus. I thought 'great.' Then I started Pulmonary Rehab and the pulmonary physiotherapist who was running it was not pleased about the change to Trelegy. She told me broncs should be coughing up mucus-Trelegy was quite the wrong inhaler. I quickly went back to my old inhaler. That lady was extremely well informed about respiratory matters, so I would trust her judgement. I hope your GP is better informed than the nurses and/ or prepared to take on board what you tell him/her.
Bronchiectasis does not come under the COPD umbrella. We all have problems breathing, but different parts of our lungs are affected.
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!😀
Thanks Don. I really need to know what my diagnosis really is as the Consultant seemed to be saying that yes the radiologist report says its there on the CT but as I don't have symptoms just to treat as Asthma. (which I have had all my life). I just need to get to the bottom of this.
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.
thanks for your response. I agree yes it's a big mess & quite honestly I have so many medical things happening right now that I don't have the time or patience to try to sort it out although I know I need to. How do you have surgery reviews? Do you have a Bronchiectasis nurse at the surgery? The hospital discharged me. I had 3 years of high resolution monitoring for my lung nodules. On the last CT it shoed mild Bronchiectasis & atelectasis. That was in 2020 a few weeks prior to lockdown. I had a couple of phone calls from a consultant in 2021 & was discharged. He did no further CT's & never mentioned any in the future. My care is in 2 different areas who are on different systems so can't see each other notes making my care very disjointed. I'm the one who has to join the dots. I had a CT in 2022 for something else which didn't show any nodules but last week after a CT for weight loss (10kgs over the last 12 months) I had a CT with dye which has shown the nodules have returned plus an asymmetrical area in my breast so have now been referred as fast track to the Breast clinic. My Rheumatology & Respiratory are in one hospital 25 miles away & other care in my local hospital. all a mix up. I hopefully will have a rheumatology appointment in December so I will mention the nodules to them & they may be able to refer me back to respiratory in my original hospital. I hope this makes sense.
hi Otto11, I really feel for you, it is exhausting enough trying to cope with multiple chronic conditions without also having to fight the system. I haven't had a review at my new surgery as I only moved to this area on 31 July this year. Their website says they have an asthma nurse. My surgery back in Wales were dreadful. I had no asthma reviews fir 5 years, nor any spirometry for 10 years!!
There is confusion over my lung diagnosis. My 1st Consultant in Wales said defo bronchiectasis, another new consultant in Wales said she couldn't see ANY bronchiectasis at all, but she saw the nodules. New consultant here is monitoring the nodules, says I probably have ABPA. Hi Res CT happening on Wednesday, am very anxious about it. Really doesn't help when they aren't on the same page, so your treatment is fragmented and often incorrect. Fair play to Northumbria nhs, they saw me in August and got the ball rolling with new scans, spirometry, respiratory physio, rreally efficiently.
keep plodding on....that's all we can do. Hope all goes well at ththe breastfeeding clinic, another worry you could do without. Xx
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.
Thanks Pauline. I will have to contact the manager who currently seems to have gone AWOL. It's a good idea to call Asthma & Lung UK so will do that first & if they have suggestions then that will help my case. regarding a Patient Participation Group we had one about 15 years ago & it lasted about 6 months then stopped. I have such a lot of health problems lately & trying to juggle them all is currently a nightmare. I will let you know how things pan out. I'm hoping as new nodules have appeared I may get a new referral to Respiratory.
All practices in England are obliged to have a PPG in place.
PPG's cant deal with personal clinical details/issues but they can look at the general handling of your recent experiences, which by the way, I consider negligent and unsafe clinical practice. How can they 'treating' you for conditions which you dispute and the clinical staff don't try to clarify for you ? Grrrrrr!
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.
Thanks Chris & I'm sorry you have had to go round the houses to get the right care for your wife. 100miles is a long way to travel. I guess if its the right care & a specialist who knows his stuff & you are still able to travel then it's worth it. I am positive just confused.
Over the last 20 years we have done many, many trips to Toulouse. Our grandson was born there with bilateral hare lip and no palet! First operation at 6 days and several more since. He is now 19 years old and still has more ops in view. His Professor is possibly No.1 in France, so no complains whatsoever. My wife started going to Touluse after disastrous eye operation in Aurillac and still goes there for her eye care as well as lung problems. Thankfully I still enjoy driving. Have a good day, 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
Thanks. I think I need to re start at the beginning with an appointment with a Consultant to get my definite diagnosis. I can't even get more than 5 days of doxycycline from our surgery & they don't give out sputum pots any more! It's just a mess. Rant over.
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
Thanks Izb1 I will try to do as you suggest. I should have a rheumatology follow up in December so will tell them that the nodules have returned so they may refer me back to Respiratory again. rheumatology were the ones who initially found the nodules whilst screening for new biologics back in 2017. I think that's the best place to start with but our surgery is a complete shambles & instead of helping me are confusing me more & more. I was told they could not remove anything from your notes but can put like an addendum note on them.
Sadly alot of lung/heart problems come with autoimmune disease. I am at rheumatology today and hoping they can give me some help with my elbow which is causing me problems. Perhaps your rheumy doc can help you find a bronch specialist 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.
Thanks. I'm not sure what you mean by spirometry tests. They used to do a peak flow till Covid but no longer do them.. I bought one myself so monitor it at home but have never told the surgery any of the results. I'm going to do my best to sort it all out but the current state of our surgery it will be a nightmare to navigate unfortunately.
Thanks I will ask for a double appointment to try to sort this out. the problem is our surgery is a lottery who you see & it's currently a 6 week wait to see anyone unless it's an emergency. I am definitely going to call Asthma & Lung UK for their input on it all & hopefully some more suggestions on where to start to unravel it all.
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.
Thanks Pauline that's a really good idea. It makes me wonder though that if I was coded with Bronchiectasis when diagnosed in 2020 why is this the first time I have ever had a review? A definite answer would be good as like you say I may have an overlap now. I'm sorry you are struggling with so may lung conditions. that's tough.
That is shocking. I would insist on a review with your doctor asap. Seeing as the nurse has got it all wrong I would insist it is a doctor and not a nurse you see. Good luck xx
Thanks. I have written an e mail requesting a GP appointment which I may get around Xmas time. Our GP's are an absolute shambles. Left hand right hand!!
I get an Asthma at timesto review both COPD and Asthma. This also happened years ago when I lived in a town.. To be honest I am not really bothered, I was bothered about three years ago I have a Pharmasist do a COPD review on the telephone - he want to ake changes to imhalers that work (Atrovent and Fostair) did not happen I refused .
it is normal for a nurse to do asthma or COPD reviews, no real need to see a GP for that IMO.
Thanks. I know the Asthms nurse does my review every year but I had never seen a COPD nurse before & told her I didn’t know why I was there as I don’t have COPD. It’s the things she said & also the care plan that are incorrect & I don’t feel I need to take a different inhaler. Especially one that dries up secretions when I was told that I should looses the secretions to cough them up. It’s all confusing which is why I want to speak to a GP & also as some Lung nodules have appeared again. I just need some clarification.
What an absolute mess.... I don't know how you have remained so calm given the shambles at the surgery!! I don't even know what to suggest (everyone has given all the ideas already) I know that here on our local radio station we have a presenter who takes on board all manner of difficult situations and holds those responsible to account! If nothing else...it makes various agencies sit up and pay attention to detail if they're contacted!!? Personally,I'd be spitting feathers!!!!Good luck!
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