What do you think about the NHS refusing to pay for treatment if patients buy top ups?

[MsDemeanor]

People with cancer who are told by their doctors that a certain drug may save their lives but it isn't available on the NHS, and who then take out loans/use life savings/sell their house to buy the drugs, are being told this means they will no longer be eligible for any NHS treatment at all for their cancer - no blood tests, no chemo, no radiotherapy, zilch.
I personally think this is absolutely wicked, and is basically sentencing people to death.
What do you think?

i have just been listening to a phone in show on the radio talking about this, and the story of the main caller actually made my cry (i am not usually prone to overly emotional outbursts)

the guy calling in was 45 and has colon cancer, he has 2 young children and has been given between 6months-2 years to live, he has found that there is a drug that would give him a chance to prolong his life, when he asked his doctors about this they told him its only available in scotland, not here and if you buy it privately you will have to pay for all the chemo ect you have had and will still need to have, which will come to something like £1/2million.
this man said he could just about scrape the money together for the new drug but even if he sold his house he couldnt pay the nhs bills.
he is going to die knowing that there is a drug that could have helped him but that he wasnt allowed to have.
i am utterly disgusted that this is allowed to happen, i know these stories are not new but hearing how completely broken this person sounded has made me so upset and so very angry, why is it right that people in scotland get this drug and this man cant have it even if he pays?
hearing stories like this makes me wish i could opt out of paying for the nhs alltogether.

This is disgraceful. So what happens if you do go ahead and do it - then you run out of funds? Will NHS 'take you back on again' or not?

I have also heard about people having operations done privately - at home and abroad - which havent gone to plan and have had to go back to the NHS. Are they charged?

bluefox, from the story i heard ,no the nhs would expect you to pay for all treatment relating to that illness regardless of your financial situation.

Apparently this 'rule' has been made to prevent there being a two-tier health system. It seems to me that is exactly what it's creating!

I hope some rich businessmen have been listening to that poor caller and made some donations. People can be very generous to others in such dreadful circumstances.

I'm completely torn on this. I have private medical insurance and I pay a lot for it - my DD and my DH have too - we run our own business. Should one of us fall ill, we need prompt treatment and frankly, we can afford the premiums so why not. Some would say I'm actually freeing up resources for people who can't afford private treatment, but it's not actually true - you have to go see your GP at the very least before the private care kicks in.

But it also pisses me off when people waste resources by not looking after themselves. A relative of mine has had jaw cancer, he's a chronic alcoholic and chain smoker. I was given the op on the proviso that he didn't drink or smoke again (and was given treatment to help him quit) and the op was a success (which is something of a surprise because he has emphysema etc). The op cost the NHS £16K.

Two weeks post surgery he was smoking and drinking and guess what, it's back. It's fairly clear he's killing himself and that's his choice. But should he be given treatment if he's just going to piss it up the wall? Frankly, he was bullied into the treatment by his family who didn't want him to die (understandably) but he's probably going to anyway and his chances of seeing christmas were always pretty low. If I was in his shoes, I probably would have said that the cure was worse than the disease and just spent the time I had left enjoying myself the ways I normally would (in his case in the pub).

Even with private care I would have made the decision not to proceed, and I know someone else who has just made that decision because she doesn't want to go through the treatment just to eke out another few months in pain.

What would be good, is if we could invest a bit more in curing cancer - so that perhaps in the future people didn't have to go through this - though I do think we've all got to die of something and in some cases - in older people - it's just that the body wears out and somethings got to give.

But this isn't anything to do with costing the NHS anything, is it? Or about wasting resources. These people are told by the NHS doctors that their best hope is to take drug X. Drug X is not available on the NHS for financial reasons (or only available in Scotland), so they agree to pay for it themselves by remortgaging, selling the house, liquidating life savings, whatever, then are told, 'aha, but if you do that, you then have to pay for all the other treatment you were getting on the NHS and it will cost millions. Ha ha!'
It's like a sick joke.

There is also a question of confidentiality - if a doc says X drug will give you the best chance, you get a copy of your notes and go to a private doctor to get a prescription but forbid permission for correspondence, how would the NHS doc know (other than you may not die?)

Of course this has all sorts of ramifications for side effect monitoring etc and completely defeats the ambitions of integrated public/private healthcare, but I do wonder how much it happens?

So, can I opt out of the NHS and get my taxes back? I mean if they aren't going to give me the services, then why should I have to pay them?

I generally like my GP. But the NHS on the whole is a mess.

And why this standard not uphelp fpr the doctors. You know, either you work for the NHS or you work privately, but not both.

Athenenoctua - if that were the case, you wouldn't contribute to schools if you didn't have kids though. Also a lot of docs do work for both 'sides' - I suspect in many cases because they want the income and are frustrated by the NHS but they also want to do good.

That's my point, chocolate. Why is it okay for doctors to support two system but the patients who want to do benefit from both should be left to die.

I pay those taxes so that everyone can benefit from the NHS -- including me.

Should single jabs disqualify my children from NHS treatment?

I'm not saying it's right, but i had always been under the impression that if you pay for any private treatment then you have to pay for any subsequent treatments etc. As I said, I don't actually agree with it.

I don't think that's always true,actually. I had a privately referal from my GP a couple of years ago. When she asked if I wanted to do it privately I asked if I could come back to the NHS if it became too expensive and she said no problem just let me know and I'll take you back. I quickly found out what Bupa didn't cover even for some simple blood tests.

MsD: although I'm don't know anything about the specifics, could it be the case that once you embark on a specific course of treatment you are wedded to it and cannot just move about between courses and providers, dipping in and out of each? For example, taking a certain course of probably high dosage drugs to fight cancer requires its own course of specific tests and additional treatments at certain times to match those drugs.

If you think about it that would make sense. Once you embark on a course of treatment for a disease like cancer, I would have thought you need to follow a specific path from start to end. Each part is only relevant in the greater context and as such each part (e.g. chemo, radio, blood test) fits within it. It may just be the case that it would be an administrative nightmare to run effectively two courses in parallel and that there are actually potential medical risks from attempting to do so, e.g. test results from NHS not being delivered back in time for next decision on dosage of chemo.

Not saying that is the case, but having seen a friend's dad go through extensive cancer treatment, it seems that it's a complex and difficult process to co-ordinate.

I would also add to the general view that it's absolutely shocking that local decision making on health (e.g. availability of specific cancer treatments) is based on centralised funding. It can only lead to unfair outcomes.

No, no risks. In many cases a person with exactly teh same cancer who happened to live in Scotland would get the gold standard treatment, while over the border they would be given inadequate treatment and not survive or die much earlier.
This is nothing to do with medicine, otherwise the health secretary would be delighted to say so. It's all about the so-called 'principle' that people aren't allowed to buy in part of their treatment, even if their NHS consultant says it might save their life
It's not a question of two different courses, it is a question of the best single course. cancer treatment invariably involves multiple treatments (chemo, radiotherapy, oral drugs etc) so that's a red herring.

I am a bit confused about all this.

From what I have read above, I think the idea is that the person would buy the drugs, from the internet or get them prescribed privately, and then take them along to the NHS doctor who would incorporate them as a part of the treatment for that person along with chemo, radiotherapy and whatever else the person needed?

Is that the situation that people needing to happen - the buying in of part of the treatment mentioned above?

I'm just trying to understand the exact situation so I can try to understand where the NHS/govt are coming from. It just seems unnecessarily cruel to tell someone that if they have any cancer treatment elsewhere they then will be charged retrospectively for any treatment they have already received on the NHS as well as any future care.

Athene - I don't think we are disagreeing here. I think we all have to come to our own ethical conclusions at the time and it's easy to generalise but imagine it is your mum, your spouse etc. If there was anything you could do to immediately stop their pain or save their lives, you probably would and bugger the consequences.

I do think the idea that you can disqualify yourself from treatment is just wrong.

Chukkypig, yes people are told by their consultant that what would really help is drug X added to their regimen, but the NHS won't fund it. They could buy drug X on a private prescription and have that part of their care privately - usually from the same consultant. HOWEVER if they did that, then they would be charged for all the rest of their care, even care that they were getting before.
I think that's wicked. To me it's the same as taking away your child's school place if they have any extra paid-for tuition or reading help. Or their NHS physiotherapy if you pay for private speech therapy if your child has a disorder such as dyspraxia.

This is utterly obscene.
Have just added another item on our list of reasons to move to france and pay our massive amount of tax there instead.

It's not only wrong - I can see the argument about inequity but think it's a red herring for all the reasons cited on this thread - but it is probably unlawful according to a top barrister I interviewed on this very issue. Thing is, no-one yet has brought a legal case so health ministers can get away with it. Because the poor sods and their poor families are a bit too overstretched to take on the hassle and expense of major litigation (and no guarantee they'd live to see the outcome).