Call for case studies: ASH report on the cost of adult social care

Thanks for the info Mark and I hope a good response is forthcoming. Pete probably won't take part as his main concern is Sarcoidosis but he did smoke over 20 years ago. He has copd (bronchitis) but that is because of the scarring on his lungs and his airways apparently.

Please, please, please, think very carefully and protect yourselves and your loved ones from this. I stopped smoking years ago and I would love to see the world smoke-free, but I will NOT be used by these people. Even when there have been articles in the press about COPD without any emphasis on smoking, the nasty comments about 'deserving it' or 'only got theirselves to blame', etc. always come rolling in. What we cost the NHS is always a major issue too - those quick to judge point the finger and complain that they have to continue working to support us because we cost society so much . I would like to see not one single COPD'er dragged into this - leave us be. At the end of the day they can go home and leave their work behind them - but we have to continue to live with the stigma. Such stigma that they tried to keep it secret that Shirley Temple had smoked and had COPD - because it would tarnish her image. Such stigma that people like Richard Briers and Leonard Nimoy hid there COPD like a dirty secret and when they finally 'found out' they had to go through the whole 'hair shirt' scenario and practically apologise to the world and beg forgiveness. No, fellow COPD'ers - don't rush into this. Think very, very carefully. Our name will be mud once again- look carefully at what it is saying above: ... (ASH) are launching a major report quantifying the cost of adult social care to local authorities for key smoking related disease such as COPD... I can hear it now when they release their findings - the hue and cry over what COPD'ers cost the country .. they are not thinking of us with this - they are thinking of their campaign. They only add to our burden - a burden that is probably greater than they will ever have to bear. Take care and protect yourselves from them and their campaign.

Parvati, you have eloquently stated exactly what I was thinking. I am with you all the way. D x

I agree with you 100% Parvati. Health education wasn't always as good as it is now and many elderly/middle-aged people afflicted with lung disease did not realise the damage they were doing to their lungs by smoking, when they were young. And what about all of us, similarly afflicted with lung disease, though we have never smoked ? Just my opinion !

I totally and utterly agree with all you said and thank you for saving me from all that typing by saying it for me. Suffice to say that people with COPD suffer enough without attempts to humiliate them by making them scapegoats. Sick people cost the services money, not just people sick with lung disease. If they want to make a documentary to shock others into giving up smoking then fine, but don't hold up people with smoking-related disease as money-guzzling parasites.

I agree ......stay clear of this.

Yes. I was a smoker and like most people of my age

smoking was the norm.

I always said that when I gave up my then job and reduce my stress levels , I would give up the fags.........I did.

Who did work for ?? The NHS.

J.

Well said Parvrati, & when they've finished dragging us through the dirt, they,l be after the obese, even though there are many who struggle due to drug side affects, hormone problems ect!! People are individual, these pressure groups just want to lump everyone under one SHOCK headline, cause as much Hate against the target group as possible, & to hell with the consequences, I hope even those who really "hate" ex-& current smokers, are able to see this "HATE" campaign for what it is & avoid it ,

Look at how those of us who have no option but to subsist on benefits are vilified in the press, we are treated as scum, this will have the same end!!!

I have an uneasy feeling about this. Having looked at this link

ash.org.uk/files/documents/...

They seem to have a reasonable comprehensive picture. Surely in these days of Computers all they need to do is ask the relevent Health Authorities and Government Departments for their statistics.

I do my little bit advising people I know and meet to give up smoking or end up like me.

Wonder if they will be asking Alchoholics, drug addicts, etc to do the same.

One thing that no one has mentioned yet is the enormous amout of taxes smoking brings in...isn't it enough to fund the entire NHS 3 times over? That's what I heard. x

Fibberti - it has nothing to do with who is being represented by which charity - it also has nothing to do with helping the local authorities see how much they spend on adult social care - your local authority will alrady know down to the last penny what they spend on adult social care - they have to account for every penny - they also already know exactly what condition or disability each and every person on their books has, as well as when they were diagnosed, the names of their GP, nurse etc, next of kin, exactly which 'activities of daily living' you find difficult and so on. This is about ASH "Quantifying' what a COPD'er, who has what is considered a 'smoking related illness', costs the local authority ie. the tax payer - as the tax payer funds the local authority. It will not even be a precise figure - the only ones who know that are the local authorities but thankfully they won't give our personal details out because of the Data Protection Act - so ASH is asking us to volunteer our info - then when they have a few of us they will do a calculation of what they consider we cost the nation, and finally use it to help back their anti smoking campaigns.

Just to ensure there is no misunderstanding here, I do back Ash in their efforts to reduce the number of people smoking -and I am well aware that they have their work cut out for them. My point is that almost every time a COPD'er has been featured in a newspaper article for the best of reasons - eg to highlight a campaign etc - the comeback from the public and readership is awful. Also even though these articles are supposed to be about the illness they inevitably end up talking about smoking. Two examples Iremember in particular - a lady who had severe COPD, lovely picture of her included looking smart, slim, hair and makeup done... she had clearly stated that even though she was a light smoker - just two or three a day - she had still got COPD. The reader comments consisted mainly of "look carefully at her mouth, those are smokers lines"...."who's she kidding, she must have smoked like a trooper" etc. The second lady was very ill end stage and had never smoked. She was pictured on her mobility scooter and unfortunately for her she was overweight - I say unfortunately because this gave the 'anti COPD' mob their ammunition - they couldn't slate her for smoking so instead they pointed out that she was lazy, obese and obviously hadn't done anything to help herself etc! This is the kind of thing we are up against - and yes - I believe we should fight against it but in a way that helps not hinders. Now think if either of those articles had included what she cost the local authority in terms of carers etc and you will start to understand why I am worried for any of our number being involved in a campaign that wants to 'quantify' what we cost the local authority.

Please fibberti, by all means volunteer - no one is saying you mustn't. But be aware of what it is you are being used for. As for 'emotive language' I have not even 'dented' the amount of stigma attached to COPD and other lung diseases - why do you think the BLF has such a struggle to raise funds? HIV/ AIDS had huge stigma twenty ot thirty years ago but even that has quelled and they are better funded and better percieved than all the lung diseases put together. My local theatre in Plymouth gets more donations than the BLF does ... and I could go on all morning.

Do let us know how you get on if you take part in this - I hope you do better than most others who have 'put their head above the parapet' for COPD - but either way we will all be here to back you and comfort you when the going gets tough.

Myself and family have been featured quite heavily over the past year on TV, in papers and on radio [last on Jeremy Vine a couple of weeks ago], in regard to the 'Bedroom Tax' and our fight against it. My COPD sometimes gets mentioned as part of the reason we need help looking after our profoundly disabled grandson.

Anyway, In the TV programme from BBC and other news interviews, I am on film with my O2 on and/or, my backpack in the shot.

There have been and still are, many supportive comments, but there have been quite a few directed at myself, along the lines of "self-inflicted [lung] disease... etc... NO SYMPATHY". These comments don't bother me much, but could so easily upset someone of perhaps a 'gentler' disposition?

I would definitely NOT take part in the study [as above], because I have that direct experience that the public can be VERY nasty indeed, and such media exposure could very easily HARM future fundraising by BLF.

"Why give money to a charity that helps people with self-inflicted disease", would be the reason.

It will only promote ASH, who have sometimes been known to be quite nasty toward smokers themselves.

The BBC film from Saints & Scroungers is here on youtube if you're interested...

Hi Paul - I watched the film with interest and was relieved to see that you eventually got a 'reprieve' on the Bedroom Tax. You, Sue and Warren make a lovely family and I am glad that you all have each other and can continue to live in the bungalow. I find the recent policy changes in housing and disability benefits and the carefully nurtured increasingly harsh public attitude towards society's most vulnerable quite soul destroying. Thank goodness there are still some decent, thoughtful people around and that they were able to help you. I was pleased to see you fairly represented by the media.

On the issue of lung disease and media - I recently squirmed with disbelief when someone on the phoneline mentioned their friend was dying of lung cancer and the immediate split second retort from Jeremy Vine was 'did they smoke' ...('they used to' came the reply) .. 'so they bought it on themselves then' said Vine.. In fairness to Vine that does seem to be the standard patter nowadays for COPD/ Lung Cancer. I remarked to someone that healthy current smokers are treated better than ex smokers who have COPD. Nor do they want people to realise that illnesses like COPD were around for thousands of years before the introduction of cigarettes. Ah well - I guess we will just have to disregard the 'meanies' and concentrate on being kind and helpful to each other. All the best to you Paul, and to Sue and Warren, take care, Vanessa.

PS. I did an article on the history of COPD from the days of the of the Pharoe's to modern times here if ever you want a read - just scroll down the homepage and you will see 'COPD a Potted History' ... click on the article summary to read in full: copdinfocus.blogspot.co.uk/

Sorry but I won`t be getting involved with this study. Those of us of a certain age are already being made to feel guilty for living too long and costing the NHS ( the NHS we all worked and paid for so long and is now benefitting those younger than us) too much. Yes I smoked- and the government got a great deal of tax from smokers long before we knew the damage it could do. The eskimos used to put their old people out on the ice once they`d lost their teeth and couldn`t chew the hide so that a polar bear could finish them off.

It isn`t the Assisted Dying bill ( which I`m in favour of) that will make elderly people feel they`re a nuisance it`s the media and society as a whole and a report such as this will only exacerbate the problem.

Well I`ve had my rant ! I don`t post very often but I read my emails every day and keep up with you all.

Love to everyone and Happy breathing. Sheila x

I don't smoke, I've never smoked and I was the happiest person on the planet when the various smoking bans were introduced. But that said, I hate the demonising of smokers and hostility towards smokers who end up with lung disease.

In connection with this study, I don't feel it's necessary for people to participate as the local authorities obviously have access to all the details of money paid out for care services. The reason they want people to come forward is to have faces to go with the story on the day. Real people are always way more newsworthy then statistics. Personally, I wouldn't like to be seen as one of the faces of smokers who are costing the country a fortune and I can't think of anyone who would.

Maybe I'm misunderstanding and there is no intention of photographs and personal details being in the media. If it's to be an anonymous process then that would be different. But I still see no need for people to come forward and share personal details.

I also dislike the mixed messages coming with the brief. They want people to let everyone know how much their illness is causing the taxpayer but they also want to hear how hard it is for those people not to be able to do things anymore. Do they really care about the difficulties of smokers living with lung disease ???

To a lesser or greater extent, many illnesses are influenced by the choices of those who suffer from them. Maybe the person with diabetes shouldn't have eaten so many sugary foods, maybe the person with skin cancer shouldn't have spent so much time sunbathing, maybe the person who's just had a sudden cardiac arrest, should have slowed down. These are just three examples that spring to mind and obviously many people have these conditions through no fault of their own but I'm just trying to make a point. Bottom line is I think that people - and yes, smokers are people too - with severe lung disease suffer enough without being constantly demonised.

Apologies for the rant.

I found the reaction to this post very interesting and would be even more interested

in a reply from Mark himself.D.