Hi all.
Just wondering if anyone has been refused this treatment? I asked my GP yesterday if she could refer me and she said at 62% lung capacity l wasnt serious enough to meet the criteria! She said l need to be at 50% or less. I find this utterly astounding :-0
Jacqui x
Hi Jacqui,
I'm not sure what guidelines the GP's go by, but that does seem wrong to me.
I think you should call the helpline, they will be able to put you right.
I was referred by my GP, and I haven't got a clue what my lung capacity is, but it certainly isn't as low as yours.
They closed the PR programme in my borough, so I was left in the lurch anyway !
Give the helpline a call, it won't do any harm, and they may be able to help you.
Take care & good luck
Dave xxx
HI jacqui, This happened to my husband - he was told that he wasn't bad enough! Then I found out you could be referred to the respiratory team (did this via the practise nurse) and they referred him immediately for pulmonary rehab. I was in a meeting yesterday which was led by the phsio who leads PR in the area and she stated that she felt it should be available to everyone. Maybe you could contact your local Breath Easy Group they can sometimes help or the BLF helpline. Good Luck TAD xx
Thanks for the info. I thought it was a bit harsh cause lm sure l read on a website that its available to anyone who has moderate copd. Yet my doc says l have to be severe to be considered. This after l told her l now cant walk for more than 10 mins without having to rest and use my inhaler
No point me going to the practice nurse. I saw her just after l was diagnosed in may and she tore into me about how l have nobody to blame but myself, and she would see me next may if the smoking hadnt killed me by then!
xx
Hi scotstaz I am in the west coast of scotland and I don't think pulmonary rehab has travelled up here yet going by the blank looks I get locally. Know exactly what you mean about the attitude to smoking too and wonder what reaction I will get at my next yearly when I make the announcement I don't smoke any more- my guess is same reaction and the damage is already done anyway saga -don't we know it -who needs reminded. I believe I am also moderate but am determined this time to ask exactly what my lung capacity is-was too feart to even ask that when smoking.
Never mind keep at them -beautiful cat in your avatar -mine is gone your picture makes me want to get another one or a small easily pleased dog. Keep smiling x
Hi lavender. lm in glasgow, and the royal infirmary has a pulminary rehab unit. I know that cause l was just in it 10 mins ago to ask if l should cancel my flu jag 2moro as l have yet another chest infection! They said yes so its done and resceduled for next thurs.
I didnt ask my lung function in may, the nurse showed me it on her computer when she was reading my notes while saying can you see what youve done to yourself, lol.
My cats name is harry, l got him and his brother as kittens but wee jack died last august of, believe it or not, respiratory disease. He wasnt even 3 yrs old 
xx
Thats dreadful! Do you know if there is a specialist respiratory team in your area? Do you have a local breath easy group - they can be quite helpful. What about trying the BLF helpline, they might be able to give you some advise. I can't believe a nurse would talk to you like that. Take care, and good luck. TAD x
I think someone mentioned breathe easy before. I will look into that today, and failing that l'll phone the blf helpline. Yes it was a tad harsh the way the practice nurse spoke to me. I did mention it to my gp on my next visit but she brushed me off and changed the subject.
xx
It Should be available to everyone that is diagnosed with COPD. We invited a GP to give a talk to our group and yes he didn't have it to easy, This member asked why wasn't she allowed to be referred To PR. WOW a lady with COPD was refused PR because she was overweight. Doesn't PR actually show us the advantages of Exercise also talks on healthy eating?
Then your talk on your Practice nurse Scotstaz. Well she shoul be kicked out of your practice or at least sent for a refresher course. First of all it is trully bad maners what she said to you. Yes you smoke there again how does the nurse know that the cause of your COPD is through smoking? No she doesn't. I was invited to give a talk at a COPD event where there were Lung and Respiratory Specialist. I chose to sit in with the audience as an agitator. Yes I was going to ask the questions no one thinks of. Then I heard it, now remember these are specialist. "There are only 15 to 20% of smokers likely to contact COPD we are now finding it to be Genetic". If we now look on most of the forms we fill in Now like Diabetes it now says does any other member of your family suffer with COPD?
However now that as been said, The worse thing we can do while having COPD is smoking. I am not allowed to mention individuals, but there is a lady on my group Her FEVI was 27 now after a year from needing to stop work her FEV1 is only 17. So what does that tell you. Nope I am not a do gooder with smoking because 26/27years ago I was smoking up to 80 cigs a day. Please my friend try and do everything you can to stop. By the way at the same time my FEV1 was 27% now its 30. Yes the reason for this what through being on PR and taking every little piece of help and information available. Talk again soon however I am very busy elsewhere but I do everything I can to get on here. Look after your self cut out your cigs and watch how your money grows while your health is getting better XX
Hi breathless and thanks for your reply.
I think it might be genetic as my mother was diagnosed with copd at 45 and was dead following an exxasberation at 46. Her symptoms were a lot worse than mine, she was on oxygen 24/7 within 3 months of diagnosis and dead within 8.
I have now been using an electronic cigarette for the last 7 days and have barely smoked a real one at all.
I am gonna push for PR cause the websites lve looked at say its available to anyone with moderate copd, and not only to severe copd as my gp told me on weds...
xx
Thanks for reply- I was born in Glasgow Jacqui. I left when my son was nine years old so let's let the city fumes take some of the blame for the state we're in -lol ! I know the Royal Infirmary well so I'll keep that up my sleeve for my next spirometry. Thanks for the info!
My son's cat Mia was 14 years old and she died due to that rotten spell of snow two years ago and "aye" you've guessed it I was in charge of her at the time whilst he was abroad. Good luck with your flu jag. Got mine last week -thank heavens we're not all that behind the times here xx
Indeed, they have just about everything in the royal, just a shame lve been told lm not ill enough to qualify, lol. Im kinda scared about getting that jag if lm honest, one cause lm.terrified of needles and 2 cause lm.scared of any side effects lol
xx
Don't give the jag a thought Jacqui honestly its the tiniest pin prick you dont see any needle it seems to be a small one inside a wee container that they stick in your arm. At the most you'll feel a slight deadening in your arm maybe a day later -doesn't last though !
Hi Scotstaz, I am on my second PR round, although i havent been well enough to attend at the moment, i was immediately referred by my doctor for PR when i was told i was suffering with COPD and mine was mild, which is why i wasnt referred to specialist or anything. Talk to your doctor again, or another doctor and ask to be referred or call your community health and see what they say. Good luck x
That's ok, i dont blame you, push it as much as you can x
Good morning Jacqui.
I have an interstitial lung disease and I asked my consultant about PR. I was told that I would not be considered as I was not a smoker. Damm strange I thought. Later another consultant informed me that smokers that need PR do have additional fluid on their lungs and with PR it is easy to remove and therefore have priority over other conditions. However he (being a different kettle of fish) understood my concerns and condition better and not I'm awaiting PR treatment. Just a short 8 month wait I'm told. Obviously far too many smokers.
I was refused it because I had a stent put in 18 months ago. I told the respiratory nurse and she said she had never heard that for an excuse before. They are going to get me PH elsewhere. I wonder if theses refusals are to do with money ?
The first thimg that popped into my head when my gp said l had to be severe to meet the criteria was nah this is all about money...!!
Hmmm. Sorry about the deletions. It kept saying " Not saved " so I re-posted. Then all 4 came up !!
Sometimes I find the Nhs support is less on prevention and just on treatment at the very serious level. Try and find pulmonary rehab info on line and see if you can follow some of it. A brisk walk as best you can for at least 1 hour every day would really help build up lung power so I was told .
That is a good beginning. Join a gym and get a list of exercises you can do at home. Start slowly and increase the number of exercises you do each day.
Pulmonary rehab and tests
Pulmonary rehab
Emergency back up pack
After Pulmonary Rehab.
