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????????

This is particularly close to home for me. Two years ago, my dad was diagnosed with a brain tumour and told he had approx two weeks to live. This was out of the blue. His consultant said there was one drug available that would extend his life by approx two and and a half months. Two and a half months is a long time when you've just received a terminal diagnosis and a life expectancy of two weeks.

He wasn't allowed to receive the drug under the NHS because (I think) the rule is something like has to extend life by three months. Really irritating but no problem, we'll mortgage the house and pay for it. When we discussed this option with the hospital they said that if we did that, then we would have to pay for all the treatment he would receive. The costs were prohibitive and we couldn't afford to do this. He died shortly afterwards.

I used to be a big fan of the NHS - bought into the arguments that it was e.g. better than the American system where you only got the care you needed if you could afford it. I have no faith anymore. Here, even if you can afford it, you can't get the care you need because it will only extend your life by two and a half months instead of three.

Sorry to be so emotive. It's close to home....

lots of people are challenging this through the courts but can only do so case by case, like this woman with breast cancer

As she points out, there is already a 'two-tier' system in the NHS because of postcode prescribing.

So sorry BlameItOnTheBogey - that's awful.

There is a review of this going on and I suspect the rule will be changed, as it could be a good election issue for the Tories otherwise.

I posted because it is something I know about as much as the next person ... just seeing a bit further down the line that's all ...

No you aren't. This is nothing whatsoever to do with people diagnosing themselves on the internet. THis is about treatment recommended by their bloody consultant.

The co-pay issue is going to get increasingly tricky, and it is not limited to cancer drugs, just more of an issue within cancer because of the hugely expensive drugs being produced by the Pharm industry with fairly low efficacy rates. Where any top up to NHS treatment is additional, such as parents buying more therapy for children or having an elective treatment outside of the NHS it doesn't really affect the NHS component (although their are irritations within the NHS when private surgery results in NHS emergency treatment). However when the drug is only one aspect of care then the top up has a fundamental effect. It is these cases where the patient is in effect told to transfer to private care. It's very tricky to come up with a way for the NHS to manage this, because it will never endorse the use of all treatments, especially where cost effectiveness is unproven. If it did the NHS would soon become completely broke, because whilst the costs for one patient may seem reasonable, when you multiply them up they become huge.

The post code lottery effect is in place because individual trusts cannot legally make blanket judgements, so they always have to have processes in place for appeals on the grounds of extraordinary circumstances. That decision will be as informed as possible, but is still to some degree subjective.

Patient groups are frequently represented during the NICE evaluation process, and why is it surprising that NICE focuses on the treatments that are likely to be used the most? Evaluations are in themselves very expensive.

NICE, as far as I know sanctions treatments, which means that NHS Trusts HAVE to provide them. If NICE does not sanction the treatment, then it is down to the individual Trust to decide whether to allocate funds to them.

What some people don't realise is that a lot of these 'wonder' drugs are truly nasty, and the side effects can be horrific.

Herceptin, for example, is heralded as a wonder drug. But, because of the way it is portrayed in the media, some patients get really angry when they get told that they are not suitable for treatment with Herceptin. They think that they are a victim of the postcode lottery, or being denied a treatment they need.

But, unless you have a HER2 receptor +ve tumour, then herceptin doesn't work well. And the HER2 receptor +ve tumours are the ones with the poorest prognosis. So actually, it should be a relief to be told that you are not suitable for Herceptin treatment.

The side effects of Herceptin are truly nasty in some cases, including heart problems. So it is a wonder drug for some, but at a price. Not just financial.

nooka, can you explain how NHS care is fundamentally affected by top-up drugs?

For instance: when my mother had lung cancer, she was unable to try one of the few drugs (avastin) that might have bought her more time, because of this issue. I don't really understand how her paying for avastin, and taking it under her consultant's watchful eye, would have affected her NHS treatment (which was pretty minimal in the last six months of her life anyway, beyond analgesics).

From the BNF:

TRASTUZUMAB (Herceptin)

Monitor cardiac function before and during treatment?for details of monitoring and managing cardiotoxicity, consult product literature

Side-effects

infusion-related side-effects including chills, fever, hypersensitivity reactions such as anaphylaxis, urticaria, and angioedema; gastro-intestinal symptoms; cardiotoxicity (see also above), chest pain, hypotension; pulmonary events (possibly delayed onset); headache, taste disturbance, anxiety, malaise, depression, insomnia, drowsiness, dizziness, paraesthesia, tremor, asthenia, peripheral neuropathy, hypertonia; mastitis, urinary-tract infection; leucopenia, ecchymosis, oedema, weight loss; arthralgia, myalgia, arthritis, bone pain, leg cramps; rash, pruritus, sweating, dry skin, alopecia, acne, nail disorders

Prescription-only medicine
Intravenous infusion, powder for reconstitution, trastuzumab, net price 150-mg vial = £407.40

Meant to extend my condolences to BlameItOnTheBogey - sounds like a horrendous situation.

Plus, I do think that NICE make a decent fist of an impossibly hard task. As edam said further down, there has to be rationing somewhere in the system.

part of the issue previously is private pts topping up with nhs care, ie diagnostic test done privately then discovering something them going nhs and jumoing the queue to everyone else who has waited.totally not fair imvho
This is why this was done it has just "conveniently " turned around . load of pants isnt it

Policywonk - One is not allowed to mix private and NHS funding in what the NHS call "a single episode of care". It is a very silly rule especially when certain drugs are available on the NHS in some PCTs and not in others. This can mean a consultant can prescribe drugs to one patient but not to another depending on where they live. It really makes my blood boil.

And apparently the committees that make these clinical decisions for the PCT can not be voted out so they are completely unaccountable from what I can gather. I think we should start a petition.

noo name - how is article 8 engaged? It seems to me that 8.2 would apply as a qualified right and numerous medical cases have failed on this basis...

But it's an outrageous situation. And what defines a 'single episode of care' anyway?

If I ran the NHS, I would give terminally ill patients free reign on drugs. It's such a short period of time (usually)....

As PCT staff are not elected the concept of "voting them out" is void. Decisions can be appealed, and you can go to court to challenge them.

Re the care issue, I don't know how your mothers care was organised, but as I understand it it is very difficult to separate NHS and non-NHS care if they are provided by the same setting, which then has knock on impact for payment systems, and creates ethical problems if one person on a ward has treatment that the next person does not have access to. My mother had one of the anti-TNF drugs pre NICE. She had to have all her tests and treatments done at her private clinic. She was very glad when NICE approved it so that her GP could do her regular checks and blood tests (a requirement of the regime which had previously been done privately) because of all the travel entailed. As it happens the drugs didn't work for her in any case. Lots of drugs have tests that go beside them to check for efficacy and side effects, which obviously have cost implications too.

Aha. The NHS

What an utterly absurd and pathetic situation. How has this been allowed to happen? There's millions being spent on extra administrators and so on. Is the whole sorry mess basically unmanageable?

Nooka - I heard a consultant saying on the radio (R4) this afternoon that he treats cancer patients in his one hospital and there are 4 tiers of care - he thought it was ludicrous:

NHS patient with drugs beneficial and necessary funded on the NHS
NHS patient with beneficial and necessary drugs denied funding on the NHS
Private patient with beneficial and necessary drugs privately funded.
And another that I have forgotten (I think it was private patient but receiving NHS funded drugs because palliative care is a new episode of care only when earlier treatment has not been NHS funded).

mmm, I see what you mean nooka.

I suppose, as others have said, it just seems inhumane when you're talking about dying people; denying people the chance to pay for drugs that might give them some extra time (but that fall short of the NICE QALY measures). But I do see that there are ethical quandaries.

Sorry, I haven't read whole thread am in a rush but ...

If it hasn't been said already this is going to change and quite soon.

Private health insurance will become much more popular at this point, because the benefits of being able to dip in and out of both systems will be so appealing.

It has always made me annoyed when NI contributions aren't optional either. If dh and I had the choice, the amount we pay on NI, I would rather keep and put towards private healthcare costs and be done with it - as per France etc. We can't pay both as finances won't go that far.
This two-tier,area to area differences is awful for patients and their famillies.

The insurance companies will already be looking at this and I've no doubt that soon you will be able to insure yourself against it IF you don't have eg faulty breast cancer genes, or any family history of cancer.

That may apply at the moment to life insurance policies, I don't know, but refusal of life insurance doesn't jeopardise your chance of getting the same medical treatment as everyone else with that condition.

CK is talking sense.
Does this just apply to drugs then? AFAIK you can have a private op but still receive NHS care. The NHS may even need to pick up the pieces when your private op goes wrong!

This is not even about NICE most of the time. Drugs available if you happen to live a mile away may be denied to you - even if your NHS consultant wants to prescribe them and CAN prescribe them to his next patient. The imposition of restrospective charges is just totally immoral. In fact, I think it is totally immoral to charge for care that is free for everyone else, just because you've remortgaged your house to buy yourself enough time to go on one last holiday and say goodbye to your family. It is ridiculous to talk about 'two-tier care' as if it doesn' exist already, or as if people don't constantly top up their treatment, with private physio, OTC painkillers, supplements, speech therapy etc etc. SHould I be charged for all of my little son's OT and paediatric assessment because I have paid for cranial osteopathy, a private assessement and plan to pay for speech therapy? Would that be fair? Who the hell would that benefit?