We were in the same position, in 2009 our doctor messed about with my husband for 12 months, he was living on antibiotics so he said he wanted to see a chest specialist, the doctors said he had a recurring chest infection and was referring him to Mental Health as he was stressing about it too much. We said right, we are going private, we were referred and he was diagnosed with COPD. Three years down the line he now has severe COPD stage 4, and Bronchiectasis. He has been in hospital three times last year for pneumonia and we were not told about the Community Matron (I found out about her online), or getting oxygen prescribed by either the hospital or the specialist, he was sent home once his temperature was normal on a snowy day in January at 9.30 pm.
We rang the GP and asked for the Matron to ring us, she called at the house and put him on her books immediately. The Matron requested a physio visit and then everything fell into place, we got oxygen cylinders, standby antibiotics, and a permanent wheelchair. It has been horrendous, even though my husband has had COPD for three years now, it took three admissions into hospital for pneumonia last year for anyone to take us seriously, we now get all the help there is, thanks to the angel called the Community Matron. We are in the process of getting piped in oxygen at home.
We should not have all this stress, COPD and any other serious illness is bad enough without chasing every Top, Dick and Harry up for help. Keep nagging and asking questions, we find the GP's have not a clue so go on the websites and get as much info as you can, if you want an answer to anything, just ask the question in the search engine and there it will be.
Sorry you weren't able to speak to our nurse this morning, she is available today but we're not always able to put you straight through which is why we offer to take a phone number for her to call you back. Why don't you email your queries to us and one of the nurses will endeavor to answer them. Or maybe we can arrange a mutually convenient time for you to call in, when we know she'll be available. We have a nurse in the office every day Alan, so please either email us or drop us a line.
Thanks,
Biddy.
Hi Alan, sounds like you need to speak to someone from the BLF. It is a minefield and you need good advice. Try clicking on Biddy's name above. You can then send her a private message and either arrange to ring when the nurse is in or discuss what you need via messaging. Best of luck. x
general management aims surrounding moderate COPD should be around
maintaining lung function which means to you avoidance of chest infections colds etc, part and parcel of this is making sure you are on the right inhalers making sure you have a good diet (lots of fruit and vegetables)
Avoidance of smoking and all occupational pollutants
Avoidance of household problems such as damp moulds cleaning products and anything else that triggers sx
Making sure that you don't have any sputum on your chest, rhinitis (runny nose) or reflux as these all aggravate respiratory problems
Then generally moving towards improving your fitness levels I always recommend yoga or pilates as these can be modified to do in a chair and improve your breathing and strengthen your respiratory muscles
Some complementary therapies are useful as well
Your annual review should include all of the above as well as spirometry testing chest xray if needed and discussion regarding breathlessness how to manage it and how to manage chest infections
Think thats a potted history if you have any questions get back to me
Hi,Vicky i am just a onlooker but just to say thank you,I have learned more from your notes than I have ever had from one of my gp, I have been diagnosed with C.O.P.D for the last 4yrs and the only thing they have ever said to me when i have had to visit the surgery is(i,ll give you some antibiotics & steroids and come back if it does not clear up) I have gone out the surgery none the wiser but still feeling like death warmed up,thank you for the information.very helpful. from a grateful onlooker.
You have answered the problems raised realy well. but you read every day on here of a fall down in the service given by GP's, and also hospitals, these points should be raised with the NHS, and the Pct's and changes should be made. it is my own experience that they treat COPD as the problem, and look no further. they treat the symptoms and not the disease, thus in my case thyroid problem, vitamin D, glandular fever, testosterone deficency. and A 1D, once these were sorted i could get on with life, althoughh in saying that the A 1D is still not on my notes.
and every time i meet some one who has a problem, the problems are the same, including COPD,
surly it is time that these things were brought up in some way that would grab attention, i did suggest a system of secret shoppers to sample services,
could the BLF not raise the profile of this problem.
I never had to ask anything as my GP is pretty good at explaining things, so much so that at times he explains things I already fully understand. I wish you luck with the new GP xxxxx
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