C.O.P.D. u.k. foundation

[alveoli]

C.O.P.D. u.k. foundation

Alarm bells have rung, about time us plebs had a dedicated/specific organisation to represent us

To get the ratings of Asthma, Cystic fibrosis and donkey organisations

guardian.co.uk/news/datablo...

[traindriver]

Will that be a separate charity the way lung cancer and others have gone but still part of an umbrella organization for lungs. Getting the message out there when less people have cystic fibrosis than have copd, when copd gets less money.

[alveoli]

Hi Traindriver,

It occured to me that a lot of donations from breathe easy activies might be intended for C.O.P.D. research etc. are often used for supporting lung cancer or asthma who have their own charities who collect far more than the B.L.F. anyway, so in effect the people with C.O.P.D. who have no fund raising organisation, but are a greater percentage of the population are having funding diluted by the lung cancer donation element who already have got the 2013 government regional funding in place besides having multi cancer charity organisations working on their behalf, C.O.P.D. just has not got an organisation under its own banner, merely an umbrella term within the British lung disease umbrella, also it is only the English, not scotland or wales who have been put to the sword for chopping blocks off

[BLFCommsTeam]

Hi Alveoli,

The BLF is the leading UK lung charity dealing with all respiratory disease and that includes supporting everyone with COPD and raising awareness of the disease. The fundraising team work hard with many different people to ever increase our income so it can be channelled into areas of need - support, awareness and research.

It's amazing how much money some of the charities at the top of this chart fundraise each year and with big totals come long established reputations, large teams of people and lots of hard work. Whilst the BLF is a smaller charity we are ever developing and growing to reach as many people as possible and expand our donations and support base. It would be a big job to start a new charity where there's already one here to support those with COPD!

[alveoli]

Thank you BLFCommsTeam

The BLF is the leading UK lung charity

CYSTIC FIBROSIS TRUST £8,764,000

ASTHMA UK £7,947,000

BRITISH LUNG FOUNDATION £3,364,038

Not critcising the efforts of the B.L.F at all in this regard, just want to help those with something people are in ignorance of...awareness

but why is it that lung cancer is forever getting the lions share and you cannot deny that C.O.P.D. is the cinderella as far as nursing research and funding

There is already in place multitudes of cancer charities, not one C.O.P.D. charity

Also I would like to ammend the suggested title to

C.O.P.D.England, as our politicians have already divided the united kingdom what a masterpiece, thinking of pitching a tent or finding a cave in scotland, changing name to rob roy

I repeat there needs to be "it would be a big job to start a new charity"

a C.O.P.D organisation

most people have never heard of it, no wonder !!!!

20% of the population have it, how many of your staff have it ?

awareness ?

[Hidden]

Having 900,000 diagnosed and if it is hugely under diagnosed then 3.2 million members would make you good competition for dogs donkeys and church roof appeals.

bbc.co.uk/health/physical_h...

[cofdrop-UK]

I really don't think in-fighting between the various lung conditions is helpful. Cystic fiibrosis sufferers have their condition from birth and generally have stickier, thicker mucus than us non cf bronchiectatics and those with other respiratory diseases, due to their high salt levels which also means they have digestive problems. They used to die whilst very young, although this is improving and there are not many more adult cfers. Not only do us non cf bronchiectatics owe them a debt of gratitude with regard to the respiratory treatement we receive but so do the all those struggling with respiratory disease. Similarly the research into asthma has also benefited us.

All lung disease is horrid to live with and I can understand the frustration of feeling out on a limb with a condition. Heaven knows non cf bronchiectasis is well known as being the ophan of the resiratory world amongst respiratory medics, but we need to stick together under one roof and I think the BLF are best placed to fight all our corners.

As an aside it is not the cystic fibrosis, donkeys etc which I resent in any way, it is the likes of The Royal Opera House, private schools who have charitable status etc.

Love XXX

[cofdrop-UK]

Sorry that should have read NOW many more adults. XXX

[alveoli]

Hi cofdrop,

Heaven knows non cf bronchiectasis is well known as being the ophan of the resiratory world amongst respiratory medics and I think the BLF are best placed to fight all our corners.

O.K. cofdrop,

in the red corner we have lung cancer, in the blue corner we have or C.F or bronchiectasis

seconds out, out come they come hands cupped BLF have the option of giving them, at least similar funding

I would love to be wrong but I suspect who's corner gets a hell of a lot more funding from blf

can the blf correct me with the figs for 2012 to show i am mistaken

[cofdrop-UK]

Hi alveoli

I'm not getting into a boxing match analogy. I don't think it is helpful.

My comments quote: Heaven knows non cf bronchiectasis is well known as being the ophan of the resiratory world amongst respiratory medics and I think the BLF are best placed to fight all our corners.

came from the lack of r and d over the years and articles I have read . Also my straight talking but very proactive resp consultant told me funding for cf comes from one area and that of COPD from another (he did say where, but I forget) and he said 'they don't give a damn about you' to which I replied 'good job you do then'. There are also very few specialist bronchiectasis nurses within hospitals - at the last count The Brompton, Glenfield, Heartlands and we are supposed to be getting a part time one. We don't have access to cf nurses. There are lots of lesser known resp diseases and all deserve the best care and funding.

I am posting these comments just as an explanation of my comment not as a moan. As I commented previously I am well aware all respiratory disease are difficult to live with and I think we agree we should all be treated equally. I was talking about funding generally and not about BLF.

However I do understand where you are coming from and maybe it would be possible and helpful for the BLF to give a breakdown of funding.

XXX

[Hidden]

Hi

The following link takes you to the research section of the BLF website - blf.org.uk/Page/Changing-Lives - this gives information about the research projects the BLF has funded.

This link takes you to the audited accounts - blf.org.uk/Page/Audited-acc... - and then this link - blf.org.uk/Page/Annual-review - takes you to the Annual reviews - and that gives breakdowns of where our funding comes from etc.

Hope that helps

Mark

[cofdrop-UK]

Thank you Mark - very interesting.

XXX

[Collington]

I hi i have copd bronchiectasis had 10 years this year . had pneumonia few times infection to many to remember .

Had nasty scab come off lungs inside Bronchiectasis my breathing does not allow me to do much cart walk far .

On top level of medication Consultation i am under have seen every 4 months for years then seen him for 6 month few times .i haven't seen him for twelve months has when appointment due been in hospital with having tumbels had a few nasty ones any way c.o.p.d. Nurse i see every three months has said stage 3 i ask i want to know what it means ,

I like to know what to expect has at moment i am sleeping so tied i am not depress i had that comes goes but so so tied like i can sleep most off day and still sleep well at night i still have some infection from sacab .

Please can you tell me what you know about stage 3 and having both lung conditions can you tell me whats going on