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But I want to pay…

April 23, 2007

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I would recommend reading THIS short document from Doctors for Reform illustrating a number of ways in which top-up payments are being introduced by stealth into the NHS system, also commented on by the good Dr Crippen. I have experienced several of these in cancer treatment, most notably in relation to the funding of three new drugs, bevacizumab (Avastin), Cetuximab (erbitux) and erlotinib (Tarceva). All are expensive. All are effective in a proportion of patients. None of them are cures. Exhaustive cost-benefit analysis has been applied to each treatment by the National Institute for Health and Clinical Excellence (not-so-NICE), and they have all been found to cost more than the notional threshold of willingness to pay (Currently approximately £30,000 per quality adjusted life year gained (QALY). Their efficacy is not in dispute.

So what are we to do? Here in the real world these treatments, despite being standard practice in Europe and the USA, are not economically affordable by the NHS, though they are all funded by ‘proper’ insurance companies. But why shouldn’t people be allowed to pay for them? At the moment in our region we have received advice from the Department of Health that patients may not pay for top-up care. If they wish to go private, all of their care must be given privately, which means they have to pay consultants’ fees and a 100% markup charged by private pharmacies for dispensing the drugs. Interestingly this opinion is disputed in the Doctors for Reform paper.

And should we tell our NHS patients about these treatments or not (assuming they don’t ask)? I have previously always found it rather difficult to say ‘here is the best treatment, but we’re going to give you the 2nd best’, but now I wonder: shouldn’t everyone know what their options are? probably they should, and I am much more open in my approach to this issue, though I generally try to discourage people from taking the private route unless they have insurance. Unsurprisingly, the Primary Care Trust do not want us to advertise these treatments to patients, but they have recently produced a standard letter explaining the above. But before we get to the stage that we can have a sensible discussion in the clinic, people have to accept the principle that the highest standard of care is not necessarily a right. I don’t think we have reached that point.

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10 comments

  1. Mens sana, you most certainly should tell your patients and their families about all the options and treatment/medicine available. I wonder how many patients have died because they have been offered the best medicine available on grounds of cost.


  2. Ellee I agree with you. It has only recently been a big issue and I think we (I?) have been a bit slow in coming to that conclusion, possibly because of a bit of moral cowardice. Now that I eat moral fibre for breakfast I can see more clearly


  3. Hi Mens Sana,
    as long as they first agree to pay everyone whose name starts with Q a million pound a year, at today’s prices (and backdated for the last ten years) simply because of an accident of ‘birth’ they were asigned a name starting with Q

    Then they can scrap the nhs – and introduce not just top up fees by stealth – but pay as you go medicine.

    As for your question – if someone wearing a mask put a gun to my head, and asked me how much I’d be willing to pay to stay alive, I would ask him if he a famous ‘highwayman’ BE, and report him to the police for ‘threatening’ my life and/or daylight robbery…

    I do not fear death, and fortunately I’m not likely to be kidnapped or my family receive demands for a ‘ransom’. Anyway, they are under strict orders NOT to pay any kid-nappers or extortionists.

    Would I personally pay thirty thousand for a heart transplant or any other ‘harvested’ organ transplant.
    No, not even if had money to burn.


  4. Q9 I think you are right. Some people will pay anything to hang on to a few more months of life, some people do not see things the same way. I would say however that its easy to say that you wouldn’t want to spend the money when you are well. It’s quite another to make the same decision when you have been given a terminal diagnosis. We all have an inherent instinct for self-preservation and especially if we are in shock and maybe not thinking too coherently this instinct can take over.

    I don’t believe (as I think you know!) in a pay as you go NHS. But I think that we do need to think about how we deal with this dilemma-some people will want treatments that we can’t as a society afford for everyone. The rich will always be able to afford it, the poor never will, but should we allow those who can only just afford it (or who can’t quite afford it) the same choices as the rich? I don’t know the answer, but my instinct is yes


  5. Also I am changing my name to Quentin, just in case you end up as health secretary :->


  6. Or maybe quack-that way I will get paid before you 🙂


  7. Hi Mens Sana,
    not wanting to make light from such a serious topic.

    I hear talk of losing loved ones. I hear talk of wanting to hanf on to a few precious moments.

    But sooner or later death is terminal – it is an inevitable consequence of being born. I would not presume to decide or dictate for another, I am simply expressing my personal opinion. I would gladly pay £30,000 to restore the engine in my car (if I had it) or build a pool in my back garden. But I would not spend £30,000 on life saving surgery, nor would I expect my loved ones to. I would expect my loved ones to be happy to let me go, and I would rather say goodbye to my loved ones in health, rather than visibly deteriorate (beyond the ravages of age).

    Curiously enough I was watching the programme on the “Philosophers stone” and how Alchemists like Newton were not so much looking to extract gold from lead, which we can do today (just not ‘cost’ effectively) – but rather looking for the essence of life. Like medical science looking for that which will prevent or halt decay (and death) the quest for the fount of youth – anti-ageing (and anti-cancer?).

    Funnily enough even if I had the ‘possible’ solution to cancer – who cares – if the medical profession cannot fix or save teeth (not even if you can pay) then do they deserve the knowledge to guarantee a cure for any cancer.

    I appreciate this is a hard pill to swallow for you, but you joked about photon torpedoes to treat cancer, and we’ve talked about proteins as cancer vaccines.

    Anyway – My grandmother was a widow for thirty years and more, and my grandfather (who died a violent death when an air compressor went wrong) was in her thoughts everyday. Who knows if this ‘love’ would have been so strong, or lasted if he’d been alive.

    PS – She was a healthy lady who lived into her nineties, if only to see all her grandchildren fully grown – (yes the gap between generations was longer, it is actually significant to longevity) – and one day like a native american (going to her/his burial ground) she just said: “done my bit – time to go”


  8. PS – You already get paid before me
    Possibly even getting paid my half too. lol!


  9. Q9 no doctor ever saved a life.


  10. Touche, I think you’ve put your finger on something.

    prolong life, reduce physical suffering, improve quality of life…

    Mind you is there any suffering that is not physical whether the nightmare be imaginary or real – if it is real to the patient…

    But it does always amaze me how many people with much faith or none – often show blind faith in that a cure will be found …

    And I think the pendulum mau have swung, is it possible now we invest more time and resources, researching future promises of miracle cures …
    whilst leaving undone those things which we ought to have done.

    I get the feeling the more (things) we have
    and including medical treatment (and choices?)

    the more people we are creating unsatisfied.
    Of course a patient (or relative) on agood day may thank a consultant or patient effusively … but we all know the reality of pain, sorrow, suffering, prolonged disease (prolonged dying?) and inevitable loss or death.

    “I was suicidal at the thought of losing a tooth”



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