NICE does it again! Sends patients home to die.

I don't know how people can do these jobs having to make the decisons they make. I just think it is very sad when a person's hope is taken away due to costs. You pay your taxes all your life and for what? At the end of the day the NHS should be for the sick. I think all fertility treatment on NHS should be stopped. I realise people suffer anguish in the need for children but if your that desperate get a loan for the fertility treatment. I would rather tell someone that they can't have a little jonny junior on taxpayers money, than tell someone that has no choice but to have a new type of treatment that the cost of it is too much to burden the taxpayer with. Anyway afew permature avoidable deaths will save the government even more when they don't have to pay your pension back to you. Your damn right about "they don't think your worth it". MP's linning their pockets, totting up their expenses, hiring relatives, driving Chelsea tractors around, whilst losing your private details on inter city trains. What a shambles. If anyone wants to organise a protest I'll happily participate, if only to demonstrate to those left in despair and without any hope, that some of us do still care!!! xxxxxx

To anyone who cares about cancer drugs being available on the NHS, please send an email to
NICE at
www.nice.org.uk
making your feelings known about their refusal to approve the latest cancer drugs, namely Sutent, Avastin, Sorafenib and Torisel.
you need to make a strong statement, this is just the tip of the iceberg, there seems to be a campaign against people with cancer, they do not want to fund new drug treatments and the reason is cost, and that alone. Say what you like in your email , but please , if you care , make sure you register your disapproval, you have until 29th August to make your voices heard, this recommendation needs overturning.
Tomdog

This has obviously been decided by some one or some people who have not had cancer and haven't faced any of the traumas of it. And lets face it its all about money nowadays and nothing else. i still cant believe that this has happened its funny we spend millions on war and aid all over the world but when it comes to our own people (sorry your not worth it) its criminal

Thank you for the website address. Somehow it doesn't surprise me at all. And other drugs will folllow. After all, the Government have got to find £3 billion to replace all our current nuclear warheads. xxx penny

As she pointed out, millions of pounds are raised from voluntary donations, and fund-raising events for cancer research in this country -yet when the research comes up with something, it's quickly discounted or discarded because of expense. Not logical! xxx Penny

Thanks for that info Tomdog,

I'll be writing a draft this weekend to send, for fear that if I just write and send it will probably be full of so many obcenities, it will be discounted! Just yesterday in our local paper a lady who managed to pay for Sutent has now been given the all clear! what price can u put on her life? Tony Wilson did quite alot to raise this issue, as his friends had to pay for his Sutent treatment. This scandal should be headline news. x

Thank you for the email address for Nice.

Did you know that Nice approves the NHS spending £31.5 m on providing methadone and buprenorphine for drug addicts? (This figure is from Nice itself)

So it's great to know that people who get themselves ill by becoming addicts get treatment but people who don't make themselves ill, like cancer patients, do not.

Also, according to Jonathan Waxman, Professor of Oncology at Imperial College London, writing in the Times yesterday, Nice itself costs £30m a year......

He also points out that PCTs are not legally obliged to follow Nice advice and so asks '...why do we need Nice?'

I don't like this kind of comparison. Comparing different kinds of misfortune doesn't get us anywhere, and reasons for drug consummation / cancer are still written in the stars. Or on our genes.

pat

I've said it before and I'll say it again - you're a nicer person than me, Pat!!!

Is there such a thing as genetic predisposition to addiction? I'd like a lot more proof before I started feeling sorry for idiots that, despite ALL the government's information on the dangers of drugs, STILL put the poison inside them.

Yes, SOME drug users are the wretched of the earth, I don't dispute that, born into lives so deprived and families so hellishly dysfunctional (often because of drugs!), they seek oblivion in chemicals. But a LOT of drug users are just spoilt brats who think drugs are cool. They can pay for their own detox.

Julie

thanks tomdog

for the link, am sending my thoughs on this awful decission to nice right after this. Ironically i am due to start on a trial next week were if i am randomly selected avastin will be added into the treatment for my breast cancer.
As usual to many chiefs in management trying to save money in all the wrong areas.
Denise

Thank you for the website address. Somehow it doesn't surprise me at all. And other drugs will folllow. After all, the Government have got to find £3 billion to replace all our current nuclear warheads. xxx penny

I have to agree Penny, I think that says it all about the world at the moment :(. I cry when I look at priorities, it all so wrong the way thing are run.

God bless
Whittersx

Yes, according to some research (think it was on the BBC health news) there is a gene which predisposes some to nicotine addiction, for example.

It's nothing to do with being nice, Julie. I don't want to open the floodgates of comparison. Particularly not in this argument, because this is the way to capsize your own boat. If you want to be especially pragmatic (and let me first apologise because these are NOT my views), what are a few extra months for someone who will succumb to their disease in comparison to a lifetime for some young person rescued from an addiction? And some of these people also have families who care what happens to them.

Hellishly dysfunctional families do not necessarily have anything to do with drugs. They can be the most apparently normal, nice families that you can think of. With enough money and possessions, but a yawning gap where emotional support for children should be. Anyway, I said I don't want to go down that road, and I don't.

I think there has to be a lobby for these medications and for cancer sufferers, yes. And I will make lots of noise in this direction, do whatever I can to support it, put my whole efforts behind getting people what they need. But I will not say that one group is less deserving than another. Whatever that group may be.

my PCT saved just over £22000 on me last year by not giving me chemo, even though i was a grade 3, next friday i go to the surgeon to see if the new 9mm lump that they have found in my good breast is a cyst or cancer again, no matter what, i am going to fight to have this breast removed as i cannot stand the fight i have had to have to get treatment to keep me cancer free just to end up with this again due to typing errors on my histology and to "adjuvant online" (the programme they use to determine our ten year survival rate), so no matter what, i will cost them more money as i a damned if i am going to go through all this again.
Alisonx

Pat - yes, I can see your point about not turning this into a discussion about whether drug addicts are culpable for their own addiction or not. BUT the point IS pertinant I think. I don't think it does capsize the boat, though, to point out that the NHS finds vast amounts of money for all sorts of things, and that 'moral decisions' are made by them every day when it comes to funding.

Right now, NICE makes it clear that a cancer patient is worth less than a drug addict to them.

There are only two options when it comes to NHS funding - ration the pot or increase the size of the pot. I don't mind doing the latter through taxes BUT even if cancer patients weren't competing for rationed resources I would ALWAYS object to bailing out irresponsible idiots who cause their own problems and don't feel the slightest gratitude or obligation to the tax payer for bailing them out. Whether those are the 'drugs are cool' addicts or the mindless binge drinkers or the gut-stuffers and fag-hackers, I don't much care. At some point in any society, personal responsibility just has to kick in - even if we debate the point at which it does, that doesn't obviate the underlying principle.

I don't doubt anyone here would give the HIGHEST life-saving/extending priority to children, when it comes to even something like cancer treatment, nor do I doubt that someone who is 99 would rather see younger people at a higher priority than themselves.

Most people ARE capable of thinking of others than themselves who may be in greater need when it comes to public funding. However, I've read quite a few Joe/Jill Public comments on the press coverage of the Nice announcement saying 'look, we all die sometime, and what's a few months extra?'. A fine and principled statement that I'm sure they will be only too willing to abide when it comes to their turn to die for lack of funding.

And I'm similarly sure that Prof Littlejohns and his colleagues will similarly not moan and whinge if THEY come down with advanced cancer and get sent home to die....

As an "irresponsible idiot", "mindless binge drinker", "fag hacker" and sometime "gut stuffer" whose father died recently of amongst other things end stage renal failure, I resent the direction this debate is taking. These drugs weren't around to help my father, nor would they have done, his kidney cancer did not metastasise, although the complete removal of both kidneys because of the disease was obviously contributory in his demise. He could possibly, had they been licenced a few years earlier, have been prescribed them at huge cost and for no benefit. But back to me, the "irresponsible idiot", I have stage 3 malignant melanoma, am I not worthy of treatment, even though there is none available to me? I am sorry that these very expensive drugs have been have been pulled like a rug from under the feet of kidney cancer sufferers, but welcome to my world.

Marsha, I'm sorry - are you someone who has refused to recognise that their smoking is contribting to their long-term health problems and is making no attempt whatsoever to give up cigarettes? Or are you someone who goes out and drinks a bottle of vodka or whatever binge drinkers do on Friday nights, then gets swept up into A&E to abuse the staff there? Are you someone who is grossly obese and makes no effort whatsoever to lose weight and change their lifestyle? Are you someone who thinks 'drugs are cool' and that they have a 'right' to get stoned on whatever their drug of choice is and there is no need whatsoever to get out of their addiction?

If so, then I think such people really shouldn't take priority over those who are ill through no fault of their own.

But I'm not sure we aren't talking at cross purposes, are we? ???

Julie

(By the way, for smokers who DO end up with lung cancer, I have huge sympathy, and would never for a moment suggest they "shouldn't" get cancer treatment, and the best possible. After all, grimly, they have just discovered all too brutally that, yes, smoking WAS dangerous to them, all along. It's the ones who continue to think 'it won't happen to me' and keep puffing away that I have little sympathy for.)

none of us deserve a cancer diagnosis no matter what our lifestyle, lets all remember that maybe because of what has happened in our lives at one time or another then maybe we have turned to drink, fags, or drugs just to help us to get through the day. so please please, lets not apportion blame when we do not know the true facts. as an ex social worker, well, i know only too well what can go on in a person's life, how dare any of us discriminate about anyone.
yes i may seem two faced as i have moaned on about how prescription exemptions are dealt with, but when it comes to drug or alcohol abuse, well, i really do think that this happens for a reason that none of us on here will ever really comprehend, cos believe me, when young people turn to this sort of life its to escape the nightmares that they have suffered already.
so please lets be a little more considerate in the way that we talk about people who's lives are fxxked up in a way that they have no control over.
Alisonx

When a person gets cancer they have in no way ASKED for it neither do they DESERVE it - no matter what lifestyle they have led. This site is supposed to offer support and comfort to people with or touched in some way by cancer. I think judging people is futile and unhelpful. There are many causes for cancer - and not all of them are lifestyle related. Personally I wouldnt wish this illness on my worst enemy. Life is short - be kind to one another. On here we have already had a kick in the teeth - we dont need any guilt or recriminations on top of what we are already dealing with. Anyone WITH cancer would understand that. We are human and we are not perfect and we chose lifestyles for many reasons - do not judge us. Jools x

I'm sorry if anyone thinks I was judging cancer patients adversely, whatever their lifestyle previously! Becasue I definitely wasn't!

As I said already about lung cancer patients who have been persistant and insistant (ie, made no attempt to give up) smokers, their terrible DX is indeed far in excess of any 'crime' they may have been said to have committed by smoking! And I would want them treated to exactly the same standard as any other cancer patient, without any prejudice whatsoever. Goodness knows, they will hardly need anyone telling them that they have contributed to their own DX by smoking - they'll know that bitterly themselves, and I don't doubt make the strongest advocates in the anti-smoking lobby because of their own terrible fate (and, for that reason, just like ex-junkies, are far more likely to convince people not to smoke or to give up!).

My complaint is ONLY about the NHS funding decisions, which, as I and others have said, can make it much easier to get the NHS to fork out for you if you are a binge drinker or drug addict than if you are a victim of cancer

Now, whether a site like this is an appropriate place to debate the NHS funding priorities is, itself, open to debate. The fact that right now, the kidney cancer families are reeling from Nice's announcement that, so far as it are concerned, patients with KC are NOT worth their maximum medically possible lifespan, does, I would say, highlight just EXACTLY how vital it is that the NHS funding priorities DO get a vigourous and cogent debate by all concerned.

I wonder, too, if there really are any, say, smokers, drug addicts or alchololics who would demand that the NHS spend money on their conditions, rather than let a cancer patient live longer?? Personaly, I'd think they would - just as I think most people would - place priority on life, rather than health (ie, keeping someone alive, rather than just making them 'healthier'). I'm sure most people here would tolerate some degree of 'worse health' for the sake of others actually just staying alive!!!! I say that because I think most people ARE decent, kind, compassionate people - whether they smoke, drink or do drugs!!!!!!

However, fighting over the funding is NOT the 'real' answer to any of this. As a society as a whole, we MUST ensure that health overall is a priority, and if that costs more in taxes (providing they are effectively spent, and not misspent on management consultants etc, etc) to increase the size of the NHS pot and so stop all this nightmare 'rationing', then I would say, fine, because the drain on the economy from illness is vast, let alone the human tragedy involved. BUT, at the same time, that does not absolve us as indivuals from taking a reasonable degree of responsibility for our own health as well. As ever, it's a question of finding the balance between the rights of the individual in a society, and their responsibilities - and making the appropriate allowances for those who have had a lousy start in life through no fault of their own and giving them an extra helping hand.

Well, that's my tuppance worth! In the meantime, the immediate battle is to put together the strongest arguments possible to overturn the Nice initial ruling which I believe is factually flawed in terms both of the costs they cite and the efficacy of the drugs they are rejecting for NHS funding.

Julie