early diagnosis

[chesty]

I have been following the comments regarding the changes to copd patients funding for 2013 and what the future the implications are.

I do not pretend to understand the why's and wherefores as to choosing to make copd as not worthy of the same as cancer and heart patients who already get the lions share of the cake to swallow.

Those of us who are keen gardeners, will know of pruning and cutting back to make healthy growth.

We have just been slung into the compost heap, no other way to say it from my point of view.

where are the so called "improvements" going to come from, the future is rosy for some ?

That is my early diagnosis

the doctors orders are

your not on the list for healthy growth as your rosy lung condition variety does not warrant the same priority as cancer tumour rose or the heart rose variety.

Onto the compost heap with you, no need for improving the allotment further.

sore chest

[chintz1]

Going to have millions the same as you chesty they are all in the same boat cast adrift by uncaring health service saving money with cutbacks that will cost lives.

[tanyamarie]

I am sorry if this sounds horrible or harsh but up until my dad became ill I would always support various charities, donating monthly and changing charity every year. Plus when you're out there are always people shaking tins and again I would pop a coin in or but a badge. More often than not it would be a cancer charity, especially since my father in-law passed away 2 years ago from lung cancer.

Now though, I get so angry that I think there simply isn't enough being done to highlight lung diseases or even the BLF. I know money is limited and advertising costs money but you always see cancer charities and animal charities advertised and they are well known. I can honestly say that I have never seen or do not recall seeing the BLF anywhere. Maybe I just didn't notice as it didn't mean anything to me at the time. Hopefully with it being IPF Week next week that will get it noticed and out there. My dad didn't do anything to 'deserve' his illness which I think some people think about lung diseases.

It is hard enough to simply just talk at times with a lung condition so lets make sure that when we do talk it is heard.

Rant over-sorry!

[Hidden in reply to tanyamarie]

You have nothing to be sorry for it is a subject dear to all of our hearts when facing life limiting conditions and the impact it has on families that care for them.

Seems the same as pushing a buggy with a baby in you did not realise how many there were until you are pushing one yourself.

[tanyamarie in reply to Hidden]

you are so right millstone, when I was pregnant, everyone was pregnant!

[amagran]

you have hit the nail on the head tanya marie, adverts on tv regularly are for cancer or cruelty or oxfam, please give for this or that, I can't ever remember seeing a give for blf. Like you, since ipf hit me hard and personally, I have researched lung foundations and other specialised lung sites and the majority of them are US based.

[tanyamarie in reply to amagran]

Hello!

A lovely chap from the Welsh BLF rang me today and I had the 'phone' interview so hopefullt an article will be published about IPF next week in World IPF Week. Will keep you posted hun xx

[Hidden]

I can understand others feelings on this and in a perfect world all patients would be equal. But we're not in a perfect world and the NHS has limited funds - I'm not a political animal so I won't comment on the whys of that. My COPD is worsening quicker than I would want it to but taking into account the finite funding available to the NHS I would not want to take priority or have funding diverted from cancer or heart patients. Many COPD patients are suffering but most will die with COPD not from it. Having witnessed a cancer death I would not want to take priority over someone who suffers like that. I also have a husband who has had 3 heart attacks (the first when he was 51 - the third almost ended his life) - I know that money should be available for ALL who have a chronic or acute condition but thats just not possible. I personally would prefer that patients with life threatening diseases, rather than life limiting, be given priority.

And I do know this is a very controversial issue - and not many may agree with me.

[tanyamarie in reply to Hidden]

Ann33,

BLF as you know stands for British LUNG Foundation and that is not just COPD. My dad has IPF and that is another lung condition. It is life threatening and most people die beacuse of it not with it. As you havn't witnessed an IPF death or I assume heard of one, I shall just tell you that it is one of the most awful ways to die. If there is one. Someone I correspond with, lost his father to this dreadful condition and I cannot repeat what he went thru it is so tragic. Another friend has just lost her husband to this.

It does not bear thinking about what is in store for my dad. I would change places with him if i could and I have tears streaming down my face as I write this as i know how awful this disease is. I'm afraid Ann that you have made the same mistake many people make and assume that IPF is like most COPD illnesses. It is not. So I would suggest that before you give an opinion on a subject do your homework first. Next week is Worldwide IPF week. Maybe you can read up on it and reply again then.

And just to re-iterate I would not want to divert money from cancer care or heart care. But it IS because of all the money those areas have that there are so many treatments now and cures that even 20 years ago never existed. If lung diseases of all kind had the same level of money spent I am confident that there would be further progressions down the treatment routes.

To quote a lung specialist............................."there are some diseases worse than cancer................and IPF is one of them".

[Hidden in reply to tanyamarie]

Quite right there tm. Incidentally lung specialists also say that about copd deaths too. I am a bit puzzled by the term 'most copd illnesses' though - there is only one copd, made up of two components - emphysema and chronic bronchitis. Asthma may come along for the ride too for some people as they may already have asthma but also get copd in their later years. The proportion of emphysema to bronchitis may vary in people but one can pretty much give rise to a degree of the other. I have almost pure emphysema at the very severe stage and chronic hypoxia. The severity at a relatively early age is put down to my alpha 1 condition. However, during the past 5 days I have rotten bronchitis - caused by a simple cold so I currently have the green gunk problem which is very rare for me.

I am really sorry about your dads condition and I know it is very distressing for you because I know the emotional state of my own son when he had to face up to the severity and implications of my own illness ( my daughter is less so because I have glossed over a great deal due to her younger age). Please realise though, that while most 'copd'ers' on here are mild/ moderate, some of us are already very severe at a young age and some may leave us far too soon. It is the nature of these diseases that the most ill will not be airing their voices here - they will no longer have the energy. This may give the false impression that copd is a 'bit of a doddle'. You may notice that I rarely if ever post anything in the late afternoon/ evening. That is because despite my hard won and relatively high level of physical function for my 'stage', I am simply 'finished' by about 7pm. I am already in my PJ's and would not have the 'oomph' left to sit up typing. That is why you are unlikely to get 'very severe' copd'ers in your chat room at 8pm - I would love to join in but am simply not up to it by then.

I understand that you are fighting for your father, and how lucky he is to have you onside! My heart goes out to you, as it does to amagran , Dionne and all the other carers and loved ones of those with these awful lung diseases. I think it can be worse for the family than the patient sometimes. As for the charities - I would love to have that conversation at some time in the near future as soon as I am 100% again, but for now I am all done in - sorry Good luck in 'fighting the good fight' for IPF, sincerely, Parvati.

[tanyamarie in reply to Hidden]

Hello stranger, havn't seen you here for a while!

It could very well be that you are an 'early' bird here whilst I am a late bird here.......a two yr old and 6 yr old have the monopoly on my time.

I told the BLF that I am more than happy to do anything to support IPF etc so if they want me to help in any way I am there. Now my dad is opposite to you see, he has to take it really slowly in the mornings and take time and even though he can stay up later, he is generally naffed all day in general. But you know Parvati, his spirit is so endearing, he never complains, he just does what he can and I love him.

Hope you got summit for the green gunk xx

[Hidden]

Tanya Marie,

I am sorry that your dad has IPF and you are right in assuming that my knowledge of that disease is very limited. But is this not the same for all of us? We have a vast knowledge of the lung condition that affects us or someone close to us and therefore look at things from that perspective. My opinion is based on my knowledge of COPD - which my mother had so I do know how nasty it can get but even taking my (and her) experiences into account I would still maintain that priority be should be given to life threatening diseases of ANY sort which should include IPF as such a disease. Most people who have lost someone to any disease, be it lung, cancer (my dad died of a very aggressive brain tumour), heart attack or any other would say that it is an awful way to die - because that is their experience. I don't think that I need to have a extensive knowledge of every lung disease to be able to comment on this blog. I really don't appreciate being told to do my homework before I can take part in a discussion relating to lung conditions in general, which was started by chesty commenting on funding issues related to COPD. How many people who comment here have much knowledge outside of the way lung disease affects them?

[Hidden in reply to Hidden]

May I just correct what appears to be some sort of misunderstanding going on here - the 'funding' you refer to is not just for copd - it is ALL of the lung diseases other than cancer that are losing out. Also - while many die 'with' copd, many also die 'of' copd. Every twenty minutes of every day in fact if you average it out.To put it bluntly those diagnosed in the mild/ moderate stages may well die 'with' it. Some of us already in the severe/ very severe stages by our 50's are likely to die OF it. As for differences between IPF and COPD, firstly, IPF can be a bedfellow of copd, secondly we die in pretty much the same way.

I am still not well enough to sit here for long, so will be happy to talk further when I am well again. In the meantime, please, please, please don't get into competition about which lung disease is the worst etc they are all bloody awful, and when we are dead we are dead - whichever variety of lung disease 'drowned' us from the inside bears little relevance then! I have lost 3 copd friends in the past two years - two in their fifties, one in her sixties. One of the fifty year olds had two teenage daughters. The one in her sixties had also developed renal problems - probably from not being given 02 soon enough. Perhaps this will indeed be classed as dying 'with' copd, but I would say she died 'of' it.

It is only natural that we each know, fear and fight for our own particular 'variety', and sometimes that is appropriate if we are to further research, treatment and understanding. But we also share a lot in common and if the 'Cinderella' conditions ie. all lung diseases other than cancer (which is already extremely well funded and lobbied for, and has not been 'left out' of the SCN's) - if those cinderella conditions are to stand any chance of getting the funding and attention they should already have, then 'Together we stand, divided we fall' should be our clarion call. P.

[O2Trees in reply to Hidden]

Im so glad you wrote this Parvarti. All lung conditions merit proper care and research and COPD can be devastating.

The criminal thing is that there is plenty of money for all healthcare. There just isn't the political will to make it available. Taxing bankers, legislating against off-shore tax evasion etc etc would produce money that would make the NHS deficit seem like a drop in the ocean. But no political party will do it. And so what happens is that some conditions get scapegoated e.g mental health and of course lung diseases and we are left with Cinderella syndrome.

Funding chronic conditions shouldn't be an either/or thing. And we COPDers shouldnt be apologising for our condition - dont forget that troops were given cigarettes to keep them calm in WW2. Our governments still gain massively from taxing cigarette sales. And anyway we know that causes of COPD include environmental pollution and genetic predisposition. (In Africa it is massive in women who dont smoke, simply from cooking on unventilated wood fires.)

I am not prepared to feel guilty. We should all be standing together and fighting for our right to decent treatment.

jean

[tanyamarie in reply to Hidden]

Ann33,

I would like to say I am sorry for saying you should do your homework before posting on here, it is not like me and I guess I was somewhat frazzled a bit and also annoyed to a degree. I won't go into my reasons now (I may rant again!) but hopefully next week alot of people will learn alot, including me. Yes, I know alot about my dads illnesses as he does have COPD too, Emphysema, but I learn everyday mainly from very inspiring people on here.

You ask, how many people comment on here and their knowledge of such diseases. I believe that whilst the medical professionals know their stuff, when you experience something personally you are the best person with the best knowledge as you are living with it 24/7. But often, advice is generalised I feel and more often geared towards COPD and not IPF for instance and as my father has IPF and Emphysema, they can often contradict each other. And what maybe correct advice for one will not be for the other.

I get angry that people with lung diseases seem to be at the bottom of the list when it comes to priority in the NHS for treatment as other diseases are given a higher priority. You are quite right when you say that we are 'biased' is the word I would use, towards the illnesses we experience and had my dad have something else then that would be my area I would fight for. So now I am fighting for lung diseases including IPF and I want more done and I think we have a right to expect more to be done.

I hope we share some common ground and are united in the fight for better xx

[Hidden]

Hi Tanya Marie

Thank you for your apology - it is much appreciated. We all get frazzled from time to time and I hope you are now OK. I too hope I will learn more about lung disease during IPF week

I work in a hospital so I will be looking out for the displays and hopefully also information about this on the hospitals intranet. I think we certainly do share some common ground, we are all hoping to learn more to make our lives and the lives of those we love, be they sufferers or cares, better.

As I said, i work in a hospital (yes I am one of the 'army of pen pushers' as the press call us - not so much an army now as a small group, trying to do their best) and do see things sometimes from 'the other side'. Because of budget cuts which always have a negative impact, I sometimes have to explain to patients why things are not happening for them as quickly as they (and I) would like. Its the horrible side of my job and sometimes quite upsetting. I do feel that sometimes people who are ill see the NHS as 'the enemy' but the NHS is not a person, it is an organisation run by people who on the whole are very caring and are trying to do their best to help others. I get huge satisfaction from being able to help in whatever small way I can. People who are ill with any illness will always fight for what is affecting them most.

I agree with you that as patients we do have a right to expect more to be done and it is very disheartening when it seems like an uphill struggle. But, we do struggle on and if we don't get the service we expect, and indeed have a right to, then we should just keep chipping away until things ARE done. It is just very sad that in the current economic climate within the NHS it seems that some illnesses are now seen as not being priority.

Your dad is very fortunate to have you to care and to fight for him - sometimes it seems to be that as a disease reaches a point where it is severe then people just have to concentrate on getting through each day as best they can and have no choice but to give up the fight for more to be done - which is exactly the time when they do need more help.

Perhaps one day there will be equality amongst all the different specialities in the treatment of all types of illnesses, in the meantime we can just keep trying to make sure voices are being heard. I wish you and your family well x