Can you help?

Hi Everyone

Would you be willing to be interviewed for an article that may appear in the national press?

We’re looking for anyone who lives with a smoking-related health condition, such as COPD, and receives support to live at home (including meals on wheels, mobility help, assistance with shopping, housework, taking medication etc) from another person (including relatives, privately paid help, local authorities, friends or neighbours).

To find out more give our Helpline a call - 03000 030 555 - and ask to speak to Carol.

Thanks

Mark

28 Replies

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  • A think thats quite shocking lung diease suffers all ready have hard time ... Yer smoking plays as much a part as work place polution modern day living

    But what is said about that and also workers in cemet factories .. No wont be cemet made them ill it will be fact thay smoked

  • Too darn true.

  • Actually I agree with daxisnotsogood, the focus is only on smoking as a cause for lung conditions, what about all the other factors and irrantants that many have affected the lives of people whether they have smoked or not. Seems to be only one banner that people and professionals clutch at and that is always smoking

  • It is saddening to see this myth of COPD as smoke related put forward as an example by BLF. Not everyone who smokes develops COPD and not everyone who has COPD smoked. This sort of misinformation may be a clue as to how an interview will be slanted?

  • I agree with Daz. OK I smoked but I also worked with carbon fibres for a number of years. My Consultant actually asked me if I had worked with any hazardous materials and agreed it would have contributed.

  • Hi Mark, wouldn't it be great if the national press would accept someone who has a lot of assistance from carers, who has a lung disease and never smoked. It would remind the medics and general public that not everyone with lung disease has smoked and hopefully reduce prejudice.

  • I did smoke but gave up in 1992. I also worked with and cut on a circular saw MDF. Asbestos, Malaysian plywood, Laminates and used Contact Adhesives most days. All with no mask or extraction! Back in 2008 I was in ICU and was asked if I worked with asbestos and at the time but thought I had not, but I have found I had! All I have been told is as far as the xrays show I am not being eaten yet, But from a recent article it seems it does not start in the lungs it starts on the outside of the lungs and works itself in. This is were most of my damage is. But you tell that to your consultant!

    Be Well

  • Why do some people who smoke live a very long life ?.. I have had my lung condition since birth but never smoked, ever, and I don't like the connection, agree with all the others.

  • There are too many causes of COPD, many of which are NOT smoke related, for me to feel happy with this perpetuation of the idea that it is effectively self inflicted - in fact I find it very annoying.

  • No thanks - I'll not be the 'patsy' either. They could try one of the other top causes of disability and death - we were reliably informed at the 'Medicine and Me' Royal Society talk that smoking made a large contribution to ALL of the top causes of disability and premature death including for example heart disease, stroke, lung cancer , dementia and alzheimers .... ask them to provide the sacrificial lamb this time..

  • It's not self inflicted,we need to get away from stupid ideas,hope no one replies,as it will be more for the blame game! It could be applied to anything people do .

  • No thanks Mark as I would not want Pete to be exposed to some media article to do with smoking and copd. He has lung disease and did smoke some 23 years ago but gave up and has not smoked since. He does not have copd because of the smoking but does have sarcoidosis which is apparently not caused by smoking. There are many with copd who have never smoked in their lives but have worked with irritants as Daz says.

    Thanks for the post anyway.

  • No thanks Mark, sounds like this will just narrow prejudice even further instead of widening the areas of research. How about one on the long term use of steroids? This certainly worries me.

    Emmo

  • Thanks, but "No thanks" - I have no intention of helping to perpetuate the idea that everything can be traced back to smoking. I have known ninety-year-olds who have wafted to meet their maker on a cloud of Old Holborne, Winston Churchill wasn't snatched away in the flower of his youth, and he smoked constantly. Sure, smoking is bad, we all know that; blaming it - and therefore the patient - for every disease known to man is just a cop-out. Agree with Emmo an all the rest.

  • Great to see such solidarity amongs the members here. Mark, I hope you will share our views with the people comissioning the article.

  • i agree with all of the above and no thanks from me as well marian

  • Hi

    Thanks for all your comments and I will certainly pass them on. The article that is being written is about the long term affects of smoking - and the associated non medical costs. The article is being written by ASH (Action on Smoking and Health) so the article is obviously focusing on the smoking aspect. Smoking is a major factor in COPD and lung cancer - and because of that many people believe all lung conditions are caused by smoking - that's part of the reason why lung conditions aren't given the "positive" coverage other conditions get. Our press team do work hard to try and present lung conditions positively and to counter the most common assumptions that are made i.e. smoking causes all conditions.

    In the case of this article it is the effects of smoking that are being focussed on and that is an important issue which we can't ignore. Nothing is straightforward.

    Thanks

    Mark

  • Hmmm, well it will be interesting to read this article when finished. Interesting to see how they work out the associated costs of care and interesting to see if Councils supply accurate figures of those costs. Also interesting to see how much of the BLF viewpoint is reflected in the article too, that smoking is a major contributor but not the sole cause.

    Perhaps it's time for a campaign to ask the Government exactly what they do with the tax they receive from tobacco sales because according to my Consultant, Thoracic Departments are not getting their fair share which is strange considering the figures show that those taxes not only pay the full costs of smoking related conditions but provide the Government with a 4/5 billion surfeit. Perhaps the BLF could campaign to have part of those funds released for UK research.

    Would you kindly give us an update, Mark when this article has been produced and where - I think we all have a vested interest in the outcome.

  • So sponsored by ASH funny that not mentioned in his initial posting - will obviously be biased and you can see where it is going - smoker's fault they got the disease - self-inflicted, look how much they the smoker's cost 'us' - not just in health and hospital funds but in home help, mobility etc. - the consequence of which will be some 'idiots' saying well they (the smokers) should pay for whatever themselves as it is 'all their fault'. We seem to have become a nation of intolerant, judgmental bullies, they have done more or less the same with obese people, viz. 'their fault' they should pay etc. and recently seen a questionaire asking if people who go to A & E departments due to excess alcohol should be charged for their treatment. Thin end of the wedge - if you say yes to that in principle then why not the obese, the smokers etc. One last point I would ask BLF that if they ask for volunteers again they state clearly up front just who has commissioned the study - thank you and well done all for not participating. xx

  • Am not going to nock work mark or british lung foundation do as i have seen research there doing .. its shame that dont get as much press as smoking seems to

    But who's guna sponcer that ... a dont think industry will so its down to public and blf and deminished lung volume to raise awarness

    Yep i only have praise for blf and healthUnlocked .. giving us a un biast platform to air our views opinions

  • Dear BLF

    Ash receives funding form both Cancer Research UK and the British Heart Foundation, so perhaps they could look there for patients for their 'smokers cost us a lot in care and support' campaign. They are far more financially able to 'take the hit' of any public backlash if it results in a drop in donations. I can't speak for other lung conditions or other people , but frankly I think COPD has been the whipping boy and easy target of the anti smoking lobby for far too long. I don't think I have ever seen an article about COPD that didn't end up focusing on smoking - yet heart disease, diabetes, HIV and cancer patients can talk about their illnesses without villification and their causes gain much more sympathy as well as substantilly more funding. Keep in mind that smoking has played a large part in Heart disease, stroke, arterial disease, lung cancer, throat cancer - and probably other cancers too.

    The knock on effect of decades of 'COPD due to smoking' is less funding for the BLF - and that's just for starters. COPD is grossly underfunded and underserved. Comparatively few trainee doctors and nurses want to specialise in COPD, not because they don't have sympathy for the patients, but because they know what a low profile it has and the problems associated with that. It also has a knock on effect on research as way less money is floating around than in HIV/ Cancer/ Heart Disease etc. If COPD attracted the funding that comparable LTC's do, we would have far better drugs and be much nearer a cure by now. Instead we are fed a 'new' inhaler every year or two. It also indirectly feeds into the resulting shameful record the UK has on premature deaths from COPD - that a woman here with COPD is 3x more likely to die prematurely of it than her French counterpart, and that the UK COPD population as a whole is twice as likely to die than if they lived in almost any other country in the whole of Europe.

    If the BLF want to fund ASH then by all means do. I personally encourage all my smoking friends and neighbours to give up. But please open your eyes and see the misery that these articles cause us. You know well the social stigma attached to COPD - Monica Fletcher and many others have written about it and the problems that such stigma gives rise too. You should try living with it - you wouldn't be so keen to put us forward for these articles if you did - you might even think of protecting us from them.

  • It would be unrealistic not to exoect the BLH to be involved in the campaign to stop smoking. However, given the negative effect that these campaigns have in terms of lack of sympathy for people suffering from lung disease ( and indeed lack of funding ), it's important to try to give a more balanced picture. If every programme/article/campaign highlighting the connection between smoking and lung disease was obliged to point out that not everyone with lung disease is a smoker, that would be a start.

  • If it is for the Daily Mail don't do it. Yes I am the same that this is going to go the way that everyone with copd has it because they smoked. so it is their own fault. I have very severe emphysema and use oxygen. Not because of smoking. But because as a child I had whooping cough. And I know of others that have this illness for the same reason. These things should be balanced..

  • I've had bronchiectasis since my teens and never smoked.

  • I'm very proud of everyone, love the solidarity. I'm sick to death of people blaming smoking for everything. I think giving up accelerated my illness, funny how I've never had Pneumonia or constant chest infections or feel this ill before. But that's just my opinion before people moan at me.

    Funny again how when my husband had a triple bypass after a heart attack last year the surgeon never even mentioned smoking, and that my husband was quite fit considering.

    Kim xxx

  • I think it might be worth remembering this might be used as a campaign to put people off smoking ie young kids I'm all for if my condition and mistakes can help someone then so be it.

    Having said that I am a firm believer in leaning from people's mistakes but I also believe given facts.

  • It is about how much people who got COPD 'from smoking' cost the state / taxpayer in care, as well as privately paid care and help, relatives caring for us, meals on wheels etc - in other words how much of a burden we are because we have a 'smoking related' illness. Of course they won't want a 'never smoked' COPD'er or an Alpha1 COPD'er even if they cost more in care - and it can't be about the cost of care for the frail, elderly, or someone needing care for mental health reasons - just if the person has COPD because they used to smoke - you know - the ones who may need care but don't deserve it because they only have themselves to blame because they used to smoke and deserve COPD ..... The ones that are more likely to die because they live in UK instead of almost anywhere else in Europe ..

    I do know a few farmers around here - they sometimes get horses / cows with COPD - I guess I could have a word and check if they were ever caught smoking - Ash and the newpapers could have it straight from the horses mouth so's to speak... they cost a fortune in vets fees don't ya know...

  • Bravo. I'm 72 severe I do cost with my free prescriptions and bus pass but nothing else, repeat nothing else. I still work, pay full council tax, I pay Income tax, business rates. I read somewhere, will try and find it, that OAP's were given vouchers in the late 40's early 50's for so many free cigarettes a week. I feel it will always be tilted towards we deserve it and oh dear look how much you cost the country with your self inflicted COPD.

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