NICE and a Not Nice Proposal

A proposal by the Department of Health that ‘wider societal benefit’ should be taken into account when considering whether the NHS should pay for a drug is being challenged by NICE, the National Institute for Health and Care Excellence. At first sight, it is a difficult question. When there are limited resources, we have to accept that we may not always be able to do all that we wish. If the cost of my cancer treatment has to be balanced against your transplant surgery or their psychiatric care, we know that one or other of us may come out the loser — not because of any ill-will, but because there isn’t enough money to do everything. We assume that deciding how to allocate resources will be done as fairly and as compassionately as possible, mainly on medical grounds, to produce the greatest good for the greatest number. Only now there is the suggestion that much more attention should be paid to how ‘productive’ in economic terms an individual is considered to be; and that introduces something new into the mix, something I myself find a little sinister.

The economic productivity of an individual can be measured in various ways. For the Government, the tax revenue to be gained from a highly paid, middle-aged executive is obviously much greater than that from someone who is elderly or unemployed. The potential long-term benefit from a young, highly-paid individual is even greater. But is that the only way in which ‘societal benefit’ should be measured? The elderly, unemployed woman may not be contributing much to HMRC, but she may be providing childcare for her grandchildren, contributing a lot to the local community through charity and volunteer work and enhancing life for countless others. How do we weigh that against pounds and pence in the Exchequer? Again, what about the person whose life, on the surface, is a bit of a mess, do they have less value than any other human being simply because they are not contributing anything that society as a whole values?

It is at this point that the Department of Health’s proposal begins to look very disturbing. I have a personal interest in the matter because, as a nun, my economic worth to the country is minimal (although I do work to help support the community and its charitable outreach, financially as well as practically). It could well be that in any allocation of resources, I would fail to tick any of the required boxes. That certainly brings home to me how radical a change in attitude this seemingly reasonable proposal of the Department of Health could bring about, one that will  affect more than healthcare. Many people take their notions of right and wrong from legislation. If we have a two-tier health service, may we not end up having a two-tier conception of human dignity and worth — in other words, first and second class citizens?

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19 thoughts on “NICE and a Not Nice Proposal”

  1. I was waiting , alone, at a bus stop outside a school, guitar on back and book bag in hand. As the bus came I was barged out of the way by the students, who had joined me at the stop. Already bothered about being one of the retired “bed blockers”, I realised that this was this age group who would decide whether I was still economically useful as I aged.

  2. Wow. I am shocked to read this. I would be of even less worth and I cost the NHS a small fortune in drugs every month. Wow.

    I am so sorry for the people of England who are suffering the dismantling of the NHS.

    At least in my country the NHS continues to function as it was designed to do and is independent of the English NHS.

  3. This, if implemented , will not only make some people second class, in terms of health but there is a worse consequence too. Those who can already afford private health care, avoiding NHS queues, would apparently qualify for better, faster treatment by NHS, than anyone who can not afford an alternative.

  4. This seems to be already in practice. When my spouses father was very ill, it was difficult to deal with the hospital staff, who were set against providing any drugs or treatment which might prolong life? Their argument was that the costs were high and there was no guarantee that the proposed treatments would work?

    They basically left him to deteriorate until he did from organ failure.

    It still hurts when we think about it.

  5. I think sinister is the right word, the sick, aged or mentally and physically infirm are considered non productive and, with limited resources, Governments are more than capable of finding a remedy, like Belgium for example with euthanasia, or UK with the LPC, etc. Circumstances change, human hearts do not.

    We made this possible when we exchanged our God endorsed duties for man made rights in order to eat, and eventually they will devour us. We are already losing our sense of good and evil, which is being subtly redefined as evil disguises itself in a cloak of light as never before.

    We would be foolish to try to make a party political issue out of this, what is happening well transcends party politics and party political divisions can only help destroy Christian unity. We can interpret the weather from the sky, but we cannot interpret the signs of the times.

    Let us pray for all those in authority.
    מרנא תא

  6. I ran up against this 34 years ago when my father, who was disabled with Multiple Sclerosis, and who was just about to turn 70 years of age required emergency surgery. It was put to me by the surgeon that he could not be given any more transfusions, had used a lot of blood, and what was the point in operating upon him, with his significant disability? That, and the risk of brain damage. I pushed for surgery, stated no heroic measures should he take a downturn, and he lived an additional 14 years. He was darned glad that I spoke up on his behalf.

    There is definitely an increasing disrespect for life in our society, from clamor for access and funding for abortion, to genetic testing to eliminate all but the perfectly formed child, to euthanasia veiled as the right to die – how long before it becomes the duty to die?

  7. This is another example of ‘hidden’ discrimination against the elderly and other vulnerable people. I would like to see ageism a crime like racism and other harassment of people. If you do not have a computer, cannot speak up for yourself,have to use public transport etc. You are already at a disadvantage and we have all read the persecution of the elderly in the media so it is important to improve attitudes to vulnerable members of our society.

  8. Yes, I encountered this some years ago when new ‘biologic’ treatment became available for RA. At first there was a shortage of the new drugs and they cost the same as an average yearly income so a points system was introduced to determine who should get them. I failed miserably at racking up points as I was not married, without children, had already had to give up my paid employment and ‘old’. Many people were in my position and it motivated us with RA to form a disease-specific pressure and support group that has gone from strength to strength, and helped to make the new drugs available to all in need.

  9. Thank you for your comments, and for sharing your various experiences. I think we all accept that difficult decisions have sometimes to be made since the NHS does not have inexhaustible funds at its disposal, but this latest proposal, if approved, could easily lead to the weakest and neediest being discriminated against.

  10. To be a devils advocate here?

    Pharmaceutical companies often introduce and repackage drugs which ought not to be, and are not necessary to the benefit of society. Cheap drugs can be hyped in this way without any challenge. With a tweak a medicine costing just pennies to make can be re-marketed for £’s as a new drug!. In reality, without NICE, the only people we would have to tell us that a drug is a good drug are the people who intend to profit from it. At the end of the day Pharmaceuticals are only glorified produce manufactures who ‘have’ to be controlled because as Thalidomide showed, they can’t be trusted.

    The elderly are a good target, they can be driven by fear to ‘consume” drugs without question, especially new drugs . Side effects rarely get reported because they are difficult to identify in that age group, and so drugs that ought to have been limited or taken out of the system, remain.

    New drugs are often touted as an alternative to life enhancing operations with some very clever sales pitches, which are ultimately a drain on the patient, relatives and everyone else. Not licencing a medicine will not deny just the elderly either, it will deny everyone across the board, regardless, as medicines are seldom produced for the elderly alone. Not licencing will also reduce the share value of the Pharmaceutical companies.

    Over the years the Pharmaceutical companies have had unprecedented access to the NHS and the dining tables of officials in governmental departments. This is not morally right and not necessarily good for anyone, because truths and concerns are buried.

    I think someone’s been doing some calculated scaremongering by drawing in vulnerable groups and distorting the argument. Pharmaceutical companies are experts in manipulating the public to their own end. NICE are there, in part, to protect the public from the relentless march of the Pharmaceutical industry and Stock Exchange towards higher and higher profit at all cost.

    Some thinking points

    * Why are drugs kept so artificially expensive in the first place when the government have the power to claim the patent and reduce the cost?
    * Who bills the Pharmaceutical industry for their unprecedented access to NHS data, patients and the ward beds they use?
    * Who objectively researches whether older drugs were more beneficial to society or not?
    * Curative medicine does not make a long term profit.

    (imho) X

    I pray for our elderly and vulnerable who are used unwittingly in these situations. I also pray that all of those working in key positions within NICE will maintain their integrity, stay one step ahead of marketing tactics and that they will have the courage to stand firm against the Pharmaceutical giants, governmental influences and peer pressures when they come across immoral practices.

    • Thank you for your detailed response which will give us all much to ponder. As you noted, my questions were more broadly based, i.e. less to do with medicine and more to do with how we assess personal dignity and worth; but it is important that we think about costs, pharmaceutical companies and all the other factors involved in the actual decisions made about drugs supplied for patient care.

      • Hi Sister,

        Personal dignity and worth are intrinsically linked with all other facets of healthcare delivery.

        I think that it was wrong of those doctors who have interests in the Pharmaceutical companies to stir the tabloid reporters as they have done. I read a report in the Telegraph today and it’s blatantly obvious that they have whipped up a storm amongst charities and pressure groups by misleading them. They have in essence provoked the headline they wanted to ultimately serve their own interest.

        Refusing to licence a drug does not automatically equate to discriminating against the elderly. It’s not a judgement on their personal dignity and worth, rather the worth of the drug itself to all age groups. I feel for any older people who have been misled and upset over the reports.

        • Forgive me for insisting upon this point, but the pith of my argument is in the last paragraph of my post. It is not so much healthcare as the way in which we assess the worth of an individual that I am concerned about. It is a subject I have discussed in earlier posts about citizenship. I have used the current topic as a way of illustrating that concern. The particular arguments for and against the Department of Health’s proposal require longer and more informed treatment, but I tend to assume readers of this blog know I’m not an expert and accept that I may use various current issues to address fundamentally religious questions.

          • I am just so, so sad that the elderly are drawn into political agendas in such covert ways, usually to the detriment of their physical and psychological wellbeing. I don’t think that there has been any time in our history when our elderly have been left to worry if they will………. have someone to help put them to bed, bring them a meal, spend 5 mins chatting, catch a life threatening infection in hospital, fear being denied basic end of life care (ie a simple glass of drink of water), or have access to carers who can speak their own language. In all these respects and more, the elderly are already treated as 2nd class citizens. I think that it will be all these insidious issues going unchallenged that will ultimately lead to a two tier health service, more so than any decision made about medicines. If they really wanted to, the government could raise the standards of elderly care, worth and dignity, just by helping to change people’s perceptions of getting older, especially amongst children who are presently not out there in their communities associating with older people . I just think that real quality of life is bigger than a medicine bottle. There’s more urgency to the situation than anyone could ever imagine. It’s good that you raised the subject, and your economic worth is priceless.

  11. This proposal angers me. It is a world away from making decisions based on clinical need. It is even worse than the “postcode lottery”.

    I am fortunate in critical care that we do not withold treatment based on cost but we may decline escalation of treatment where it is considered to be futile and/or not in the patient’s best interests. Sometimes it is kinder and more appropriate not to offer or continue (aggressive) treatment.

    Who would be expected to make the judgement on a person’s “worth” when it comes to the medical care they would be offered? I couldn’t. If I were to have to start denying treatment based on a person’s “worth” then I think that would be the day I left medicine.

  12. Thank you for drawing attention to this, Sr Catherine. I wholeheartedly agree with you.

    This anomaly is something I have been very conscious of during the last decade or so and have seen it played out near at hand and further afield. Personally, I always make sure that all health professionals understand that I’m fully employed, despite now qualifying for retirement. This is absolutely true as regards a daily occupation. No matter the income, in the course of what we do, we are providing employment for countless others and all kinds of support along the way.

    I don’t think the Government begins to understand how much the mental health and wellbeing of British society owes to religious organisations and, indeed, all those dedicated to voluntary care in the community, irrespective of any prayerful dimension.

    As to the dignity of the person, which should be the basis of all our interactions, when human worth and the moral tone of society is fuelled by a completely illusory, smoke and mirrors, monetary system, bankruptcy on all levels is the outcome. I am reliably informed that quite specific Government calculations exist as to the value of members of the population to the State.

    This is all very dark and I wish it could be despatched to ‘conspiracy theory’. But I dare say, in one form or another, it was ever thus.

    What can we do? We are Christians who try to live according to our lights, for sure. We can pray earnestly, remembering that God’s strength is made perfect in weakness. This is something that eventually confounds all other strategies. Even our own individual efforts may reach further than we know.

  13. Away from the hysteria of the headlines surrounding this story, there is a more profound question: how do we, as a society, wish to allocate resources.

    The measure currently used is based on “Cost per QALYs”, quality-of-life-years, and has been the basis of spending decisions at the NHS (and before that the DHSS) since, I believe, the 1980s. (A QALY is is meant to value a year of good health and wellbeing as “worth” more than a year in pain or disease.)

    It is relatively easy to throw brickbats at the use of Cost per QALYs, particularly when the transition between theory and practice is of necessity based on some subjective judgements, and the complexities of healthcare funding mean that issues like the ‘postcode lottery’ occur.

    But at its heart, Cost per QALYs have survived decades of use in the UK – and have resulted in a subtle but meaningful shift in healthcare spending – most obviously that neo-natal wards are relatively speaking one of the best funded areas in the NHS.

    The debate, which has now been going on for many years mostly behind closed doors, is how to evolve it from its current relatively simplistic and utilitarian approach.

    One of the proposed ways of looking at “value to society” means that you should consider the impact of a health treatment on others beyond the patient. For example, health treatments that will preserve the life of a person with advanced dementia for a further year will impact not only them, but also their carer, and potentially their family and to a lesser extent their community. Should we strive to include a measure of the impact of a health intervention on others?

    I would argue that as a society, we should. We ask the state to be utilitarian on our behalf, but that doesn’t mean it should be naive in its utilitarianism; it doesn’t mean that we believe utility value to be the same as monetary value; and it doesn’t mean that other actors should shy away from helping those that the state chooses not to. Choosing who to help, who is most deserving of charity, will always, ultimately be an individual choice.

    • I asked how do we value people; you ask how do we allocate resources. Both are perfectly legitimate questions, but the answer to the first may affect how we answer the second, especially as not all would agree with your thesis that we ask the State to be Utilitarian on our behalf.

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