I need to get this off my chest

I dont often post but I often look at at posts/questions and find them very helpful. I was diagnosed with severe COPD in August 2013 after being a Asthma sufferer for years (have not smoked for 17 years). For the last 10 days I have been more out of breath than normal, by that I mean that activities that I normally do without too much effort I was doing alot of huffing and puffing and thinking what is the matter with you. Anyway I decided to get it checked out, I managed to get an amergency appointment at my GP's. I saw a locum doctor and I explained my problem to him and after doing normal checks said all was OK and suggested that i use my reliever inhaler more often. I was flabbergasted that he did not offer me any medication, here I am with severe copd, no referral, no PR course offered, and no rescue meds. I rang BLF helpline and was told to download COPD Guidelines and make a another appointment with GP and go armed with guidelines and ask for the appropriate treatment.

25 Replies

  • I'd say that was pretty poor Patsymac. Do you have regular check ups with the respiratory nurse at your practice?

    1. Since my asthma worsened last winter mine told me to come every 6 months instead of 12.

    2. A few weeks ago when I went to GP with simmilar issues he doubled my Seretide to 500 AM & PM for Winter

    3. On going back on 15th Dec was diagnosed infection & given a good antiB and told to take my blue puffer 4 x daily

    for the duration - which has reallly, really helped.

    Three things which have helped. Dont be fobbed off, cheeky b*ggers.

    Well done you for calling BLF and also for passing on their advice.

    Best to you xx

  • Thanks for replying Peeg I was so aggrieved , I never go to GP's if it is not essential and to be be fobbed off like that I was speechless, I forgot in my post to mention that I was asked to have a full blood tests to make sure that all was well in other areas (it did'nt matter that I could hardly breath) It has made me more determined than ever to get the correct treatment for this illness and to stop forever apologising for having this awful condition. x Pat

  • Ah, very good that you're going to have full bloods done. Have a look at the form to see what they're testing for. Start to keep a health diary, it will help later on if you need to refer back to anything xx

  • Hi I know how frustrating it is! WHEN ( after many visits ) I was diagnosed I was given meds put left to struggle only to be told "just one of those things" each time I've had infections, not given any info about copd I had to google it lol. With all the kind support and advise you'll get on here you'll hopefully be on the right track soon. I'm seeing a Gp Friday morning requesting a referral and scan, fingers crossed for me and you x

  • Have you downloaded those NICE guidelines to COPD Jeannanne. Get you ammunition ready & go armed to the teeth :)

  • Yes Stitch he only had to look at my records to see that I am not a serial attender at GP's one of my problems is that because I do not present with the normal symptoms like cough, mucus and temperature I am not deemed to be ill, I have made an appointment with the GP I normally see for next Tuesday and I am going in armed with a battery of questions. That locum made me feel like a time waster. Thanks for the support. X Pat

  • The locum earned his time with you! while your time was wasted, his pocket became fuller ! I like the term locust, Stitch, that's indeed what he made me think of when you wrote it !

  • Over the years I have found that locums/trainee gp's take the lightest touch approach on my first visit. I now give their advice a few days then go back to see a different dr and even another one.... At some point they will do what I ask. Sad to say but if you battle on and don't go back, they assume everything is fine! Mind you - I am not taking my own advice at the moment!!

  • Its difficult patsymac. Its a good option to ask your doctor for a referral to a respiratory consultant as your symptoms have worsened, that way you will get the proper checks done to determine what is going on, especially if the GP listened to your lungs and established you did not have a lung infection. Normally they can hear crackling in the lungs if there is an infection. Any worsening of symptoms need to be check out. I've had infections where my only symptoms were a burning sensation, tightening and pain in chest and around the back and reduced mobility and breathing. I did have lots of crackles going on when the doc listened to my lungs and because of this I was prescribed anti biotics and steroids as you should be if you have a lung infection.

    Hope you can get to see a consultant quickly, in the meantime if your GP surgery has a trained respiratory nurse attached, ask for an appointment with him/her also, or with any other doctor in the practise who is familiar with respiratory problems. But still ask your GP to refer you to a specialising respiratory consultant at your local hospital.

    Best wishes BC

  • Hi Patsymac, think we have all come out of the surgery on occasions, feeling aggrieved especially those of us with COPD. Good on you for ringing BLF, I did that last time they fobbed me off and returned to the GP very quickly and with the help of the practice manager and a new doctor managed to get my own GP to review the health problems. So go back armed with any details you have to help and write things down so they have to discuss it. Try getting a longer appointment, I understand what you mean when you say they don't think your ill, some of us are good at keeping infections at bay and find the breathing is the biggest problem. I can recall being unable to breath and told to increase my ventolin when in fact I had infection which then took many months to clear up with a crash course of steroids in the end. Experience says be persistent, good luck.

  • Thanks for your support Katie, I feel very frustrated at the moment, as I said in my post I had asthma for years and I often presented with no chest infection, no cough, only breathlessness and I was immediately given a course of steroids which on most occasions used to solve the problem, now that I have COPD that is all discounted, I think I still suffer with restricted airways, but I agree with you that because I am good at keeping well and being upbeat it goes against me. X Pat

  • That's it chuck out the steroids like sweets,that destroy you,stay upbeat or it will get you,we do come up with a lot of friction,don't forget people that deal with us do not have copd,so you are the master of this disease,none else will know what's best for you,if you study you will find a way,I don't get a lot of infections because I refuse steroids,I have studied them,break down immune system,worse than you were already,I survive on inhalers,lesser of the evil,so being upbeat will go for you,as you will have the energy to fight for what you need,only you will discover that,take care.

  • Sorry you had this problem. It was actually a Locum who first told me she thought I had COPD and the first Dr. ever to use an oximeter when I had a chest infection a year ago and told me my level was very low. Gave me some very high dosage AB's and a warning that if my breathing worsened to go to A & E which I had to do. I have received good attention until this Monday when the Dr I saw was curt and insisted Omoxicillin would clear my infection even though I told her to has never done so. So now Wednesday I'm no better, if anything worse. Go back and good luck.

  • If you are not feeling any better today Suzy6 go back to the Doctor. I was told that if there was no improvement by Day 4 of abs that my husband should go back to the doctor to have the abs changed. You could always ring the BLF helpline for advise too. Take care and hope you feel better soon. TAD xx

  • Thanks Tadaw for the info. It is a new Doctor, mine of 30 years retired a year ago so first visit to her. The Nurses at the New Practice are brilliant but not so sure about this Dr. Might try another Dr. they have four or five. I will finish the course, ends Sunday, if no better she will not be able to say I didn't try it and also should prove to her they don't work for me.

  • That's awful Patsymac. It was a locum who prescribed drugs that put my husband in hospital. Good for you getting the information you need and dealing with it. I have found that it really is a matter of us taking control of the situation and asking (sometimes telling) for help. Good Luck. TAD xxx

  • what great advice from those who really know :)

  • I was diagnosed 10 years ago and have never been offered any course just meds

  • You got the answer,have you done that yet?

  • Hi Patsymac,

    We have the same situation with my husband's COPD. It seems our doctors just cannot be bothered. Because of this, my husband is going worse ans worse. Each next flare up makes his condition worse, and brings more medication that do not help much, actually. I has been searching net and came across a little and reasonably priced device that helps to bring the phlegm out. I was flabbergasted why doctors did not inform their patients about this thing. Search web for Shaker Classic from Evergreen - I found it to be the cheapest, more expensive is Flutter on Amazon. Give it a go. My husband did not listen to me first as I am not a doctor, but now he says it works. I search the info everywhere as I do not trust doctors to that extent to relay on them completely. Sadly, but it's true. They are not interested; they are not curious; they are too busy to take care.

    So, this small device is not a cure-all, but hope, it will help you and everybody else who struggles.

  • Hi that happened to me doc said no chest infection was backwards and forwards for five weeks still no joy and breathing getting worse made another appointment and it was a different doctor she put me in antibiotics and steroids still on them 6 weeks later she said you have a bad chest infection tried different antibiotics and to go back Tuesday she said if no improvement by Tuesday will have to admit me in to hospital if the first doctor would have done his job right I wouldn't be in this situation the half head and another thing if you have copd your doctor has to see you within 48 hours that's wot the specialist told me my advice keep going back till you get sorted otherwise you will end up in hospital

  • hi Cyberpunk, it sounds like your chest infection is really bad and I hope that the new antibiotics will work for you and you will improve. When I had a chest infection recently my specialist recommended that I try the bubble PEP method to help me cough up phlem from my lungs and clear out the bugs and mucous. It really worked for me and is simple to make at home see this link: gosh.nhs.uk/medical-conditi... All you need is a clean empty bottle with 10 cm of water and a tube with about 5-8 mm internal diameter. You breath in deep and blow out into the tube and make bubbles. Do this about 10 -15 times each session and have about 4 sessions a day when the infection is really bad. Then have less sessions as you see fit. I have recently suggested this to a couple of other members on here and they also found it useful to clear their infections. So you might like to try this in addition to the treatment your dr is giving you- can't hurt.... All the best to you xx.

  • Oh thank you I will give that a try cos so far nothing helping so worth a try am getting fed up now never seem to get a good run at being well thanks for that and I will let you know how I get on many thanks stay well x

  • yes let me know how you go please. I have my fingers crossed for you...

  • Will do thanks again x

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