Top-ups: the earth moves as the NHS's 60th anniversary approaches

Now topping-up is to be permitted, does the NHS need a consumer framework? And should there be any cut-off point at all?

First Thoughts … Last Thoughts
by Nicholas Timmins , public policy editor, Financial Times

Sometimes the earth just moves under your feet. For 18 months now, pressure has been building over whether NHS patients should be allowed to “top up” by paying for some of the more modern cancer drugs that either NICE has not approved, or a local primary care trust refuses to fund.

Throughout that period, the Government’s line has been that cannot be permitted. It would create “a two-tier” NHS, where some patients who paid would get better treatment than those who could not afford it.

But the earth has moved. First – and this may not have been decisive – on top of the long-running human interest stories and newspaper campaigns, the BMA’s hospital consultants’ conference, having decisively voted against the idea last year, voted overwhelmingly in favour of it at their conference on 4 June.

By the end of last week, there was not a national newspaper left whose leader writers did not agree that the current formal requirement was indefensible – that if a patient wants to top up in these particular circumstances, they have to go entirely private for the whole of their current episode of care.

Principles and practicalities

Aside from principles, which we will come back to in a moment, there was the practicality. Some hospitals and PCTs have quietly been allowing patients to top up, even as others have held on in the face of appalling headlines to the official guidance: to the point where patients unable to afford these (on current evidence) marginally life-extending drugs have died, and done so spectacularly on newspaper front pages.

It is, of course, important to recognise who is being denied what here. Most of those being denied are being denied the right to pay several (in most cases, many) thousands of pounds for drugs that on the current evidence, prolong life for a small number of months for a proportion of the patients who take them. More evidence may of course change the evidence to suggest that these drugs are more valuable than that; but it may equally do the opposite.

Add to this inconsistent application of the rules; the BMA; the media pressure; and the NHS Confederation’s own and thoughtful paper on the issue, developed with the Institute for Public Policy Research - and Nigel Edwards’ pronouncement as the Confederation’s policy director, that the current position is “unsustainable”; and you have the prescription for what we have got: a Government review of the rules.

Thinking the unthinkable

Even a year ago, this would have been unthinkable. Even now, it will promote on the left and amongst those with a strong sense of equity, the belief that this is the moment the NHS model gets destroyed. That allowing people to mix and match public and private, and allowing some people to pay for something that others cannot afford, is the end of the NHS as we know it.

It seems to your commentator that argument is irrefutable: the earth has moved. This is a 1949 moment: equivalent to Nye Bevan’s resignation over prescription and dental charges. Yet for all the furore that caused, no-one now would say those changes fundamentally altered the nature of the NHS: that it does not remain a largely tax-funded, largely free at the point of use service, delivered according to need not ability to pay.

New rules

But the rules are going to change now. Not least because they are, in fact, only rules. Nothing in NHS legislation enshrines the fact that you cannot mix public and private within the NHS. Subsidising private care with NHS money - as in the Conservative proposal for a “patient passport” at the last election - is entirely another matter, and would require primary legislation.

But as things stand, if Doctors For Reform ever do mount a judicial review of the rules, it is - if not a pound to a penny, then certainly a good 5 to 1 - that the Department of Health would lose if it resisted the action.

So the law, the BMA (don’t dismiss their clout in a case like this) and the media (never, for good or ill, underestimate theirs) - and the Confederation, as the voice of the NHS itself, all recognise that what is currently happening is indefensible. Once that is recognised, however, the question is what replaces it? Here the issues get far harder.

Highly expensive cancer drugs that in only a proportion of patients extend life by some months on average on current evidence – lots of rather important qualifiers in that phrase – are one thing. But if that is to be permitted within the NHS, should there not be a consumer protection framework? What information will be available to let patients and their families under enormous personal pressure make a rational decision about whether to spend £5,000, £10,000, £50,000 or more – it depends whether the treatment works for you – on extending life for a time, but far from indefinitely.

What should be the guidance for people on average income, half average income, twice or five times average income?

This is not a question the state or the NHS can answer on families’ behalf. But people will need some level of consumer protection, just as they have it now (however inadequately) when buying pensions or life insurance.

Then remove this most emotive of issues – life-extending cancer drugs. If some form of top-up is to be permitted for that, where does the line get drawn? Or should there be no line? NICE until recently had guidance around wet macular degeneration (wet AMD) which crudely put said only the second eye should be treated and only when it was affected. So a patient says: “OK, I’ll take the second eye on the NHS and pay for treatment of the first at the same time". Should the NHS permit that as a top-up payment?Or take lenses. There are some relatively costly replacement lenses for eye operations that the NHS will not currently fund. So if the patient says “you are operating on me anyway, just put in the more complex lens and I will pay the £3,000 difference between the two”. Is that permissible?

Or the patient who through diligent internet search, discovers there is a joint replacement with some bizarre diamond / cobalt tip that costs £10,000 more than any of the standard NHS inserts, but which early trials suggest might - just might - have advantages over the NHS alternatives. Can they pay for that?

If they can, surely we then have an NHS service where the better-off get (at least potentially, if the trial results are right) a “better” NHS than the worse-off? And recognise that this is not a ‘rich vs. poor’ or ‘life and death’ argument. It is an argument where a bunch of people who are merely somewhat above the average income distribution – i.e. many of the middle class and most of the people at this week’s NHS Confederation conference in Manchester – would like something that for some patients (but not all) may indeed prove to be clinically better: even if the treatment in question does not pass NICE’s test of cost-effectiveness.

And even if as taxpayers, we rationally say that we would rather not fund such treatments until the evidence is clearer. How the answers to these questions are worked out in the coming weeks and months will help define what the NHS is after its 60th anniversary, as opposed to what, at least conceptually, it is now.

We welcome your comments on this debate.