Having given a little thought, there are a couple of things I want to pick up on from yesterday’s article on the NHS’s co-payments policy.

The first comes by way of a little bit more research into the Doctors for Reform campaign group, research that yielded up the inevitable opinion poll which the group claims, as you might expect, demonstrates broad public support for their campaign.

Doctors for Reform has conducted a new poll as part of its top-up campaign. The campaign aims to help patients who have been prevented from paying extra towards their NHS care in order to receive new drugs and treatments. The results of the poll indicate that the campaign has strong support from the public.

In truth, this latest exercise in push-polling does little else but demonstrate the weaknesses of opinion polls as a measure of public sentiment.

Compared to the kinds of push-polls used by anti-abortion campaigners this one is a model of brevity – it contains only two relatively straightforward questions – and yet it is the simplicity of the poll that causes it to be both misleading and unreliable.

Let me show you what I mean by taking through the two questions, one at a time…

Q1. At present patients can either be NHS patients or private patients. They either get all of their care free on the NHS, or pay for all of their care privately. What do you think ?

If a patient wants extra treatment, do you think

The NHS should always pay for every treatment regardless of the cost to the taxpayer. (Result: 43%)

The NHS should allow patients to pay for extras without making them pay the total cost of their care. (Result: 48%)

Patients should have to pay for all their care if they want to pay for anything extra. (Result: 7%)

This is presented by the group, in its press release, as follows…

– Only 7 per cent of voters support the Government’s top-up policy. Only 7 per cent agree that “Patients should have to pay for all their care if they want to pay anything extra.”

– Of the remainder, a majority of voters support the Doctors for Reform campaign. 48 per cent of all people agree that “The NHS should allow patients to pay for extras without making them pay the total cost of their care.” 43 per cent agree that “The NHS should always pay for every treatment regardless of the cost to the taxpayer.”

The group claim of majority support for their campaign is what would commonly be called ‘trying to have your cake and eat it’. What the group are actually campaigning for is for patients to have the right to top-up their NHS treatment, as their on campaign briefing indicates:

The DfR campaign will aim to support an individual case to judicial review, both financially and professionally. This will obtain a legal ruling on whether current government policy can prevent this type of payment. If the case is won, it will set a wider legal precedent that will allow patients in similar situations to top-up their NHS treatment.

Of those responding to the poll only 48% actually support this position. Of the remaining 52%, 43% that the NHS should pick up the tab for all treatment (43%) regardless of cost to the taxpayer and 7% think that that if a patient wishes to to go private for part of their treatment they should go private for all of it, with 2% answering ‘don’t know’. If the group’s campaign were focussed solely on supporting patients to obtain treatments that would otherwise not be available on the NHS then, yes, they would have majority support, but in focussing specifically on the top-up issue that support falls into the minority, albeit only by a small amount.

Digressing for a moment to pick up another salient point from the group’s campaign briefing, in giving its reasons for supporting this campaign the group provides what is a rather bald and unnuanced view of the nature of the doctor-patient relationship:

DfR wishes to support patients in this difficult situation for the following reasons:

To restore the primacy of the doctor-patient relationship. The General Medical Council’s view is that the first duty of a doctor is to their patient (General Medical Council (2006), Good Medical Practice). Thus if there is a beneficial treatment available, even if not provided by the NHS, then it becomes the doctor’s duty to inform the patient of the option. Furthermore if the patient chooses to pursue the treatment option then the doctor should take all reasonable steps to procure it in the most efficient manner possible.

Is it really that simple? I don’t believe that it is.

In fact, I think I can safely falsify that particular assertion with a single word… abortion.

As we should all know every well from recent debates there are some doctors who reserve to themselves, as a matter of conscience, the right not provide information about abortion even if that information is explicitly requested by a patient. Would the group consider those doctors to be in breach of their first duty to the patient or is there a bit of wiggle room here that they’ve failed to acknowledge?

And if this duty can legitimately be modified by reference to a doctor’s personal conscience in the case of abortion then are there not other situations in which questions of conscience may also intrude, or is the possession of a conscience, perhaps, a privilege reserved only to those harbour a defined set of religious beliefs.

The private cancer specialist in his Harley Street Clinic may conceivably not trouble himself too much with such considerations. After all, the mere fact that a patient is sitting before them may be taken as grounds to consider that it is at lease possible, if not likely, that they possess or can obtain the means to consider all the available options. But is that necessarily true of a general practitioner who knows, from prior contact and experience, that the patient before the lacks the means to consider any option not provided by the NHS, or does the question of whether it right to raise what would be a manifestly false hope not tax their conscience?

The view of what constitutes a doctor’s first duty provide by the group is, I would suggest, a gross oversimplification of a complex set of moral and ethical dilemmas that lie at the core of the doctor-patient relationship and its is precisely because such dilemmas can only be resolved within that one-to-one relationship that the doctor-patient relationship is of paramount importance. As such, the argument presented by Doctors for Reform is logically self-negating as if one seeks to constrain doctors to a rigid, linear view of duty, one that that excludes considerations of conscience, then one immediately diminishes the value of the doctor-patient relationship to the extent that it ceases to hold a pre-eminent position in the delivery of healthcare.

Having concluded our little excursion into philosophy, we should get back on course and look at the second of Doctors for Reform’s two questions, which goes like this:

Q2. Suppose you were diagnosed with a life threatening medical condition and the most effective treatment for this condition were not available via the NHS. Approximately, how much do you think you would be willing to pay yourself for such a treatment?

The only reasonable answer one could ever give to such a question is a series of addition questions.

How much more effective is this new treatment?

How much does it cost?

How will it improve my situation? Will it improve my situation?

How much more time will it give me over and above what the other treatments can offer?

How likely is it to work?

Why isn’t available on the NHS?

What are the side effects?

And so on and so forth…

In the absence of such information, the responses given to this question are more or less meaningless, but for the sake of completeness, here’s the options that respondents were given and the levels of response:

Nothing, if not available on the NHS (19%)
Less than 1k (7%)
1-2k (11%)
3-4k (6%)
5-6k (7%)
7-9k (2%)
10-12k (7%)
13-15k (2%)
15+ (22%)
Don’t know (16%)

As with the first question, we’ll start with the group’s spin on these results…

The great majority of voters would pay extra towards their healthcare if they are diagnosed with a life-threatening condition. Excluding “don’t knows”, 77 per cent of voters would pay extra.

– Voters are willing to pay very large proportions of their annual income to top-up. 31 per cent of people would pay more than £10,000. The average (mean) amount is £6,750. Put into context, the average person working full-time currently earns just under £24,000 per year (April 2007, latest figures).

ICM, who carried out the poll for Doctors for Reform, are a reputable polling organisation and, like all such organisations, goes to considerable lengths when carrying out general population polls to weight and balance their sample to make it as representative as possible – all of which means that when you look at the full results what you get in addition to the questions and answers is a whole raft of additional information on things like age, gender, social class, general location by region.

So, when you see an organisation reporting the result of an opinion poll which ask a ‘how much would you be prepared to cough up for’ question and the write-up suddenly switches to making comparison between the poll response and generic population data, like the average wage, then its fair bet that there’s something in the demographics that accompany the poll results that the commissioning organisation would rather you didn’t pay any attention to – and as this is a ‘how much would you pay’ type poll, the obvious place to look is in the social class breakdowns.

So, for example, we’re told that, on average, people would be prepared to pay around £6,750 for top-up care over and above what the NHS has to provide – and for now we will disregard the fact that the people answering this question did so without having access to anything like the kind of information necessary to give an informed response. Now that’s a fair amount of cash, which I’m assuming to be a ‘top whack’ figure, i.e. its what people would, on average, be prepared to pay either in total or, perhaps, over the course of a year rather than being a monthly or quarterly amount – this being something else that the poll fails to clarify. However, when we look at the social class breakdown then the numbers start to alter in a number of interesting ways.

Taking just the averages, respondents in the AB class indicated that they’d cough up, as an average figure, a little under £9,200 for their unspecified (and woefully underspecified) package of top-up care. For the C1s its around £7,300, falling to just under £6,000 for the C2s and for the DE class it comes in at £4,100.

And we now have our first significant omission because, at an estimated £16-17,000 for a course of cetuximab and with Avastin even more expensive, neither the average across all classes or the individual average for any single social class would be enough to cover the treatments around which this campaign is currently based.

So let’s skip the averages and look just at the figures for those who would be prepared to commit the kind of sums necessary to obtain these treatments and, for the ABs its 34% who would put up £15K+, for the C1s that drops to 22% then down to 19% for the C2s and finally, in what may be a triumph of hope over reality, 13% of the DE class also said that they’d stump up over £15K. Quite how many of them could reasonably afford that kind of figure and what they might have to go through to raise the money is, again, not a matter with which Doctors for Reform seem overly concerned.

One way or another, only 22% of respondents, in total, indicated that they would be willing to put up the kind of money necessary to pay for a course of either cetuximab or Avastin as a top-up. I would also strongly suspect that, particularly amongst the DEs, the 13% who said they would be willing to put up that kind of money is rather more than than the number who would actually be in a position to cough up that kind of cash in reality, not least as I think it very likely that quite a few of the DEs who, in answering the poll, put a high value on their health did so while vastly under-estimating how difficult it would be to raise that kind of cash in reality. A fair conjecture would be that the thinking amongst those individuals, aside from being a little wishful, might well centre on the possibility of selling or remortgaging the house, a train of thought that would, in practice, be quickly derailed no soon as its came to the question of quite how they would convince anyone to loan them money when they may only have a few months to live. There’s sub-prime and there’s sub-prime and dying of cancer is, I’m afraid, about a sub-prime as it gets.

Once you burrow into the detail, much of what you find comes as no great surprise – older people, especially the over 55’s are more likely to take the view that the NHS should pick up the entire tab for treatment, while the age groups most likely to stump up the most top-up money are the 25-34 and 35-44 groups, those who are most likely to have children and who, therefore, see themselves as having the most reason to hang on to life for as long as possible in order to see their kids safely through into adulthood. These are entirely predictable patterns and, to a considerable extent, fairly meaningless, unless you’re trying to spin an argument…

There are also differences in opinion between age groups which suggest that support for the DFR campaign will grow over time:

– Younger voters strongly support the campaign. Of 25-34 year-olds, 63 per cent support top-up and only 30 per cent think that the NHS should pay for everything. For 18-24 year-olds, the respective figures are 48 per cent and 40 per cent.

– And more young people would top-up than the average. Of 25-34 year-olds, 41 per cent would pay more than £10,000. 35 per cent of 18-24 year-olds would.

Well, of course they would, after all the younger you are the more you would feel that you would have to lose should you be faced with a life-threatening illness, particularly if you have children to bring up.

That said, it doesn’t automatically follow that this will translate automatically into a growth in support for this campaign over time. Attitudes change as you get older and the person who at 30 would have given pretty much everything to stay alive to see the children safely into adulthood may quite easily come to think, at 65, that they’ve had a decent innings and achieved what they set out achieve in life and be largely unphased by the prospect of their impending demise. There’s an aphorism whose source and exact wording I can’t recall but which goes something along the line of:

To suspect your own mortality is to know the beginning of fear. To know that you are mortal is to know its end.

I must admit I’ve got a vague notion that I might have first run across this in one of Frank Herbert’s Dune novels, which many might consider gives it a doubtful provenance but I dare say that if it is one of his then its something he blagged from somewhere else, with something like the Bhagavad Gita, one of the Buddhist Sutras or perhaps the Tao-Te-Ching being the likely original source. Exactly where it comes from is, perhaps, unimportant as it does seem to me to express an important and somewhat universal idea, that as people get older many of them get over their fear of dying or at least come to terms with the idea that they’ll die at some point in the future and will modify their worldview accordingly, which is rather the opposite of what Doctors for Reform are trying to suggest.

Okay, so this is something that only time will settle one way or another but what it should do is give pause for thought and reinforce the point that opinion polls, and any assertion based on them, need to be treated with caution and a healthy air of scepticism because there is a significant difference between expressions of ‘popular sentiment’, which is what polls like this provide, and informed opinion, which is anything but what we’re getting here.

In short, one has to ask in this case whether and to what extent the result of this poll might have differed had it included the question, ‘how much would be prepared to to pay for a new treatment that might extend your life for between four and six months, after which you will die anyway?’

Somehow I suspect that the numbers prepared to put up £15K+ for that option might just be rather smaller than the number who gave that answer to the rather vague question asked in this poll.

The second thing that needs to be picked up is what seems to be, for many, the big question – why should people not be permitted to top-up the treatment that the NHS provides?

One the face of it, if one leaves out political considerations such as those suggested by Alex in comments on my earlier piece…

The thing about co-payment is that once it’s in, it’ll spread – remember free education? Most people won’t ever need these drugs, so when the NHS is short next, it’ll be a lot easier to bill more patients than fund it from general taxation (!!Teh income tax!!Ni!Ni!), and so on until not being able to afford treatment becomes a common condition, as it is in the co-paytastic USA.

It is much more important to hold the line on free at the point of use, which accounts for far more saving of life and reduction of suffering than this sort of boutique medicine ever will. Even the majority of cancer patients won’t require this – the prime treatment for cancer is surgery, whose success is strongly associated with early diagnosis. The religion of socialism is the language of priorities.

…plus the whole question of whether this then creates a two-tier healthcare system within the NHS then its difficult to see quite how one can justify the current co-payments policy as a matter of principle, simply because it imposes an arbitrary regime rather than taking each individual case on its merits.

That said, in taking these cases on merit, were I faced with making the call, while I would not withdraw all NHS treatment from any of these individuals I would also not authorise any NHS care over and above that which might be offered for palliative reasons and certainly nothing that would contribute towards the treatment regime they have chosen to access on a private basis.

Why?

Because it is, first and foremost, not the role of the NHS to facility patient access to treatments that have, as yet, not been adequately evaluated for their clinical effectiveness by comparison to other existing treatments. It is not just the cost of these new drugs that is at issue here, if you take the time to read the evaluations, it is also the case that Avastin has not, as yet, been evaluated for clinical effectiveness as a treatment for secondary cancers arising out of breast cancer while in the case of cetuximab what we know is that its slightly more effective if used in combination with irinetocan but not whether its actually more effective than the existing treatments that the NHS offers.

There is, for me at least, an issue here as regards how new drugs are licensed and brought to the market because, for the most part, the licensing process is driven almost entirely by considerations of safety with clinical effectiveness too often coming a very poor second.

Feel free to disagree with me here but from what I can see of these cases, if a doctor wishes to prescribe either of these drugs at the present time then the way to do it would be to find their patient a slot on a clinical effectiveness trial programme, where the tab would, of course, be picked up by the drug company that is looking to put these treatments into the market and not by the patient.

If there is a compromise to be struck in all this then its has to be that the price of introducing a measure of flexibility into the NHS’s policy on co-payments is that it will only entertain the practice where the top-up treatment that the patient is seeking has been evaluated for its clinical effectiveness against the existing best standard of care (BSC) that the NHS has to offer, i.e. where it is only the cost-effectiveness of the treatment that is at issue and not the clinical effectiveness of the treatment. The NHS should not, in my opinion, be in the business of throwing good money after bad nor should it act to facilitate access to unproven treatments not just on cost grounds but as matter of basic ethics.

To be perfectly honest here, on the strength of everything I’ve read over the last couple of days, my personal inclination would be to respond to this campaign by taking steps to stiffen the current licensing regime to the extent that new drug treatments cannot be prescribed in the UK outside of clinical trials, and that includes trials for clinical effectiveness, until the drug company seeking to bring the new treatment to the market can satisfactorily demonstrate that what its going to be selling is not just vials of high-priced woo.

In fact, it goes a little further than that because before any new drug is licensed for sale in the open market there should be sufficient evidence obtained via trials to give patients an honest and realistic appraisal of what they are likely to get for their money should they buy into a new drug treatment in terms of how likely it is that it will work and what kind of benefit they should, on average, see from the course of treatment should they decide to pay for it. you’ll excuse me if that seems a bit of hard line to be taking but I have rather a hang-up about a little thing called ‘informed consent’ which I think matters a lot and which, having read NICEs evaluation, I rather doubt that any doctor would reasonably be able to obtain given just how little concrete information there currently is on the effectiveness of these drugs.

If we can have regulations within the financial services industry to prevent and punish the misselling of mortgages, pensions and insurance policies then I see no reason why the same basic principle should not apply to doctors in private practice, and drug companies of course, when it comes to selling new drug treatments.

Now, to close by pre-empting the obvious comment box arguments, I’m well aware that such a suggestion will likely be met by the usual alarming comments about everything from the increased costs of regulation to the risks of such a scenario setting off a full-on US style litigation culture but, to be perfectly frank, I read something a while a go that left me with little or no sympathy whatsoever for such arguments.

As I recall, the story centred on a professional body in the US that is to anaesthetists what the various Royal Colleges are to specialist clinicians in the UK, and this organisation found that its members were having a major problem with the whole litigation thing in the States in as much as this was causing the cost of professional indemnity and malpractice insurance to spiral out of control.

Big problem and one that needed an answer… so, what could our enterprising bunch of medics do?

Well, the hit on what was rather a novel solution – the organisation decided to make a major investment in training and in the improvement of professional standards amongst its members, reasoning that by for the best way to avoid all that nasty business of malpractice litigation was to ensure that its members didn’t screw-up quite so often.

The reason that I ran across this story was, quite simply, because their rather novel approach to the issue of the costs of malpractice insurance/litigation actually worked rather well, which is what made it newsworthy. The improvements made in training and professional standards succeeded, in a relatively short space of time, in significantly reducing the number of malpractice claims filed against anaesthetists and this, in turn, caught the attention of actuaries working in the insurance industry and got factored into their calculations and, lo and behold, the cost of malpractice insurance for anaesthetists who completed the new training programme and reached their professional body’s required standards started to fall – if I remember correctly, the premiums dropped by about 10% in the space of year which is what got the media to sit up and take notice.

And the moral of this little story?

For me its simply that there’s nothing quite like competence when it comes to reducing costs and that, in the right situation, getting that right can more than compensate for any increased burden of regulation that might be required as an incentive to set the whole thing moving.