Hello all,
I was wondering how you go about getting referred to a blf or copd nurse, whenever my husband goes to the regular GP they don't know much about his (admittedly quite rare) lung disease, and last time we went they actually had to google it!
Any advice appreciated.
Thanks 
Hi what lung desease dose your husband have. There should be a practice nurse in your gps who should know about your husbands condition . Or you could ask to be referred to a respiratory clinic. The BLF helpline is 03000 030 555
Hello OBWifey, and welcome to you and your husband.
You don't mention the lung disease that he has? I agree with Nottobad that you should ask for referral to a respiratory clinic at a hospital. Your surgery should have a nurse who sees patients with chronic lung problems, like COPD. As far as I'm aware BLF nurses don't work in the community much - there was one in the respiratory nurse team at our hospital. Why not phone the BLF helpline, during office hours? And if you tell us your husband's problem there's bound to be someone here with the same or similar to chat to.
I hope he's managing all right but understanding his illness is important for both of you.
Take care, Sue x
Phone number for BLF - 03000030555
Hi, the practice nurses at your GP surgery/healthcare centre, often have training in chronic diseases such as COPD/Asthma and diabetes, etc. If your surgery does not have a clinician specially trained in this area, ask to be referred to a hospital based clinician.
It's important because conditions like COPD require at least yearly monitoring- sometimes more.
Your GP googling medical conditions might seem incompetent, I understand this, however note that they are trained to interpret information and follow evidence base treatment set out by NICE guidelines.
EDITED
I'm leaping in here with both feet. Can I conclude that the OB in your name might stand for Obliterative Bronchiolitis? If so I should love to know more about your husband's symptoms, history and diagnosis. If not then welcome to this forum anyway. And if you tell us more then we can help.
All the best to you both
K
Gosh - you're very much on the ball! Totally missed that but I suppose you look at it from where you're, as it were, sitting.
S x
May be wrong. Watch this space....
Welcome from me too, huff 💐 x
Yes, he has Constrictive bronchiolitis obliterans. Thanks so much all for replying some good info there that we will get cracking on.
He had pneumonia in his teens and was diagnosed with 'lung damage' which in the last 2 years has changed to his official diagnosis.
Mostly he struggles in the winter and is fairly stable in the summer, it would just be interesting and helpful for us to know how it progresses in others and if there is anything we should expect or any other help we can be accessing!
I've looked up breathe easy groups and there is one nearby so thanks for that suggestion
I wasn't really being critical of them googling it (I google things all the time) more just frustrated that we don't seem to find anyone who knows much about it!
hope you all have a good day
Hi OBWifey sorry I can't help you I have never heard of that lung condition. I have COPD. But I had bronchitis befor I was dx with COPD in 2006. Ask about pulminaory rehab courses maybe your husband could go on one of them. Hope someone else can help you. Take care xx
will do wife 🙂
Hi OBWifey, if your surgery has no staff with a good knowledge of this or any other disease they must refer you to the nearest hospital that deals with said disease if you are concerned about your husbands condition YOU MUST INSIST that he be referred to a Specialist and they are obligated to do so. If they don't they are then culpable for any further damage to your husbands health. I AM only aware of this because my GP and the new lady who took her place is probably the better of all the others in the surgery (lucky me) told me so. I had emphysema and my wife was concerned that I was showing signs not consistent with it and the old GP just said that this sometimes happens the new GP SAID this was not good enough and put an urgent referral to the hospital . I got appointment pretty quick was put through several tests and couldn't come up with a firm enough diagnosis as for various reasons they couldn't do a Biopsy . They referred me to Papworth Where all the tests were done in one day. This all happened from end Nov2015 - 12 Jan 2016 considering the time of year this was pretty damn quick unfortunately the diagnosis wasn't good and the prognosis even worse. I only tell you this because it is your right to have a referral and their duty to provide it so you must insist ,bang your fist on the table if necessary. Hope I didn't go on to much but they are there for you whereas some think the opposite. Please persist.
Preston146
COPD information from the BLF
Macmillan Nurse
Community Nurse
COPD
