Topping up your NHS treatment with a bit of private is against the law - I didn't know this until now, it's ridiculous, care to discuss?

[Thomcat]

I've just been listening to BBC London and they were discussing, in relation to cancer treatment in this instance, that, if you have been receiving treatment on the NHS for x amount of time and then you hear about a drug that is available that might help and you pay for it, in addition to the treatment you are getting on the NHS, you are then given a bill for all treatment you have received thus far on the NHS. If you don't put your hand in your pocket and pay for this additional bit of medicine then you just keep receiving the free NHS treatment with no problem.

How outrageously unfair is that [cross]

Apparently there are 30 hospitals in the UK that are allowing this to happen. Not sure how, by turning a blind eye mainly I think, or by saying if they take this paid for drug home it?s a separate thing and these hospitals are getting round it that way. But it?s not legal and it?s only about 300 hospitals turning a blind eye.

What a ridiculous and unfair, disgusting ?law?.

Why should you not be able to top up your NHS treatment with a bit of private by being able to afford a drug that might help you?

Discuss????????

There is indeed already a two-tier system and most of us to some extent already utilise a two-tier system e.g. by paying for extra SALT for our DC with SN or whatever. What seems particularly pernicious about the situation Thomcat has identified is that it only affects some people - cancer patients. Completely unfair.

Anna8888 - yes, but that is a two-tier system between State and private - what we are talking about here is a two-tier system within the State-funded system. The argument of the Government is that the former is ok, but the latter is not.

The founding principle of the NHS is treatment according to need, not ability to pay. By allowing one group of people to top up, you are breaching that principle.

I think the answer should be that everyone gets the drugs their doctor prescribes, rather than bringing in co-payments. There are all sorts of issues about the drugs bill and yes, these need to be sorted out, but when it comes to the terminally ill they don't have time to wait until the policy makers and health economists have cogitated and negotiated.

Have a nasty feeling that the debate about co-payments is actually being used by those in charge to break the NHS. And they will get away with it, because they can hide behind the terminally ill. Once you say 'for ethical reasons, we'll allow top ups' you've reduced the NHS to a minimum service. A very slippery slope. Better to say 'the NHS will fund the drugs an individual patient and their own doctor agree are needed'.

it is true that pharma companies oversell new drugs - if you look at trials, when a drug is launched it looks like the best thing since sliced bread, ten years later they generally do only slightly better than placebo. And being cautious about new drugs means thousands of people are saved from serious side effects that just don't show up in pre-licensing clinical trials. BUT when it comes to the terminally ill, they deserve a chance even if the evidence isn't yet there to show the drug is safe, clinically and cost effective.

Except that my mother's surgeon was able to draw on her NHS x-rays to make a diagnosis; and my mother is able to return to her GP at any time if she has concerns.

So there is quite a mish-mash of state and private going on.

Exactly SSB.

CK - yes, but given that we all must accept the need for the NHS to ration - is it still ok that it forces anyone who uses the system to accept ONLY the drugs/treatment it decides to give if it wants them at all?

Ie, an all or nothing approach.

Health economics is a dark art. I have tried to understand - to some extent I do understand - how NICE reach their economic decisions. And a lot of these drugs are working at vast expense at the margins of life - hugely emotional times, but the results are not cut and dried. 'It works' is only the beginning of the story (and often as far as the media and the desperate people they claim to represent will delve). How well does it work? At what cost? You are trading in last hopes sometimes - it is easy not to ask difficult questions, but to go for every glimmer of a chance.

Btw, I used to sit on the committee at the Dept of Health that decides which drugs NICE should look at. Was shocking to see how it worked. So easy for a drug to be turned down because it doesn't affect very many people, or no-one who happens to be on the committee feels very strongly about it, meaning NICE never looks at it, meaning PCTs won't pay for it and patients won't get it.

Anna8888, yours didn't involve extra drug treatment though, which is where the rub seems to be.

Cancer is a very complicated issue - there are all sorts of cultural things going on when you talk about survival vs. quality of life.

Here in France the survival rates post cancer diagnosis are excellent (however, cancer diagnosis is late compared to other developed countries because screening programmes are inefficient). French doctors and French patients do seem pretty gung-ho in their approach to "survival" and I have seen far too many people with an appalling quality of life undergoing continuing torture treatment...

One thing that worries me about NICE decisions is that the clinical effectiveness of a drug is rated on this very rough and ready measure called a QUALY - basically how much money it costs to give a patient an extra year of life, quality adjusted (i.e. not just on a ventilator).

All health economists admit the QUALY is not a great measure, but it's the only thing they have got so they make these huge decisions on it. Personally I think if all you've got is a crap measure, you shouldn't use it for decision making.

But edam - with that system who is reponsible for making the decisions over sticking within budgets?

Your suggestion would appear to make it individual doctors' decisions - the benefit of NICE is that the decision is made for them.

The NHS has to stick within a budget and it can't be up to the front-line doctors to keep within the budget.

Or are you suggesting a limitless budget only for terminal patients?

no-name, yes, I do believe that. I don't believe that demands for payment should ever, ever be sprung on anyone - to find yourself faced with an incredible bill is not humane or fair. But yes, I believe that if you do anything else, you hit that 2-tier system straight away. And I will argue against that.

And edam, I agree (as usual, I think) with pretty much everything you are saying, but not the last statement about deserving a chance on unproven, unlicenced drugs. I just don't agree with that at all. Chuck tens of thousands at a desperate glimmer of hope - hope for what - a few days, weeks? And with the opportunity cost of all the other things that money could have been spent on, gone?

Or help all of us come to terms with what is inevitable, and to deal with death as well as we possibly can.

Problems with the NICE system could be solved/reduced by making it a more open, democratic system?

Edam (again!) within PCT land it is a bit easier for us to look at drugs NICE hasn't considered than it is for us to approve treatment for anything NICE has rejected. The few-cases, not NICE'd drugs can be decided on a case-by-case basis with the input of clinicians, people to analyse the research evidence and people keeping an eye on the local finances.

More open? In what way is the NICE system closed? They accept suggestions for drugs and treatments to look at, they publish their papers, minutes, conclusions... Their web site could be better (ie so you can actually find something) but I wouldn't accuse them of not being open...

CK - fair enough, it is a very principled approach and one I respect, and possibly even agree with.

It just leaves a nasty taste in my mouth when I consider what I would do if I or my dh were terminally ill and trying to snatch some extra time with our small children?

Also, if such a principled approach is taken, it is certainly not fair that it is only applied to a small section of NHS patients. It should also be applied to everyone who mixes private and State treatment surely? Then it becomes pretty much unworkable doesn't it?

I'm not quitting on you all, but I have to get something finished - I'll come back later.

How are their representatives chosen? Can/are patients included?

I know Captain and it may work well in your PCT but other PCTs do use 'NICE hasn't looked at it' as an excuse to turn patients down. Which is not the way the system was supposed to work. (Well, it might be what the politicians intended all along, but if so they should have been honest about it).

And I do kind of agree with your argument about not chucking thousands of pounds at a glimmer of hope. BUT can't help thinking of the man I heard about who lived for (I think) two years beyond his original life expectancy because his employer funded his treatment.

It's ridiculous - self medicating via internet knowledge. And who picks up the pieces - the NHS...be jolly glad for what you have.

Um, have you read the thread or looked in a newspaper, Hannah? No-one's talking about self-medicating, they are talking about the NHS refusing to pay for certain drugs where the doctor treating the patient thinks that drug would be useful.

Sometimes prolonging the terminally ill patients life can be the expense of their quality of life and how pleasant a death.

Things aren't always quite as cut and dried as they seem.

Hannah, why post when you know absolutely zilch about what people are talking about?

And sometimes the drugs do not just prolong life, but immeasurably improve the quality of life and will sometimes actually save your life. Not only that, but if you lived half a mile down the road, you'd be getting exactly that drug on the NHS. this is a wicked rule, that benefits nobody and harms many.

like this poor woman who could have had the drug if she lived somewhere else in the UK