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29 Apr 2008 : Column 32WH—continued

The Department has made a start with its NHS better care, better value indicators. We must stop waste and the inappropriate use of drugs and reduce medical mishaps, which so often arise as a result of drug errors. As I have said many times, I believe that we must have a public debate on health care rationing, because I do not think that the NHS will ever be able to afford everything. That debate must be both national and local. Many people have mentioned co-payments, and there must be
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a national debate on that too. The very idea of co-payments underlines the fact that the NHS is free to everybody, because only those who can afford it could make co-payments, but there should be some way to tap into that. I do not know what that is. I hope that hon. Members might have some ideas. We also need better input from the public and patients into the commissioning system at PCT level. I am grateful to have taken part in this debate, and I hope that some answers will come out of it.

11.37 am

Mr. Peter Bone (Wellingborough) (Con): It is a great pleasure to follow—I am not sure whether I can say “my hon. Friend”—the hon. Member for Wyre Forest (Dr. Taylor), my colleague on the Select Committee on Health, and to participate in the debate so ably introduced by the hon. Member for Norwich, North (Dr. Gibson). I listened to his opening speech, which seemed to go by in five minutes. He raised so many important issues that I could have sat here and listened to another hour of it.

To return to the point made by the hon. Member for Wyre Forest about co-payments, rationing and the NHS—we must have a grown-up debate about those issues on another occasion—my blood boils to think of it. Imagine that your mother was seriously ill with cancer, Mrs. Humble—unfortunately, my mother died of it—and that there was an opportunity for a drug that might help. Imagine being told, “We won’t provide it on the NHS.” You might ask, “What if I use my life savings to buy it? That’s okay,” but you would be told, “No: if you do that, you’ll have to fund all your treatment privately.” Most people cannot possibly afford that. What we are saying is that we will allow only very rich people to be treated with the new drugs. That is where the whole system falls down.

I believe that the unique NHS system into which we have got ourselves may have many advantages—terrific doctors and nurses work within it—but it has a flaw: it is actually a rationing system. Of course, in an insurance-based marketplace system, people would get the new drugs. One problem is that this country has one of the worst take-ups of new treatments.

I shall touch on two personal matters to illustrate the problem with exceptional treatment. First, many years ago, my father was diagnosed with the first signs of Alzheimer’s, at which time he lived in Southend. The doctors said, “We have a new drug that we think might help your father. Would you like to try it?” We tried it, and not only did it stop the onset of Alzheimer’s, but it actually improved his quality of life, and for the rest of the eight or nine years that he lived there was no deterioration. However, that very drug can no longer be prescribed in the early stages of Alzheimer’s, which is nonsense.

For me, the second, and classic, case involved my wife: five years ago, local general practitioners spotted a lump in her chest and quickly referred her. It turned out that she had both liver and bowel cancer, and she was given a 30 per cent. chance of survival. She had an immediate bowel cancer operation, after which she received chemotherapy with a new drug. Luckily, we had private insurance, which it seemed right to use to save the NHS money—over the whole period, I suppose that the private insurance company paid up £40,000 or £50,000. After the chemotherapy, she underwent a major NHS
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liver operation—it was at the top of the scale for liver operations—performed by Mr. Ashley Dennison, a marvellous consultant in Leicestershire. After the operation, she again received chemotherapy, and tomorrow—thankfully—she goes for her five-year check-up, after which we hope she will be released from check-ups.

Listening to this debate, it struck me that if we had not had that private insurance, we would probably have been denied that drug, without which I do not think my wife would have survived. At the moment, only the rich, or those with private insurance, which tends to mean that they had the money in the first place, will get the treatment. That goes completely against the principle of the NHS being free to everyone based on clinical need. That is where the system is falling down. I am sure that that is not what the Minister, who is very able and caring, and the Government want. Sometimes these things happen without anyone realising it.

I agree entirely about the standardisation of exceptional circumstances. There is no clear guidance across the country. My only worry is that if the Government introduced that, it could bring in the lowest common denominator, so that fewer people might end up being treated, which I do not want to happen. My personal view is that if a consultant says, “This person should benefit from this drug,” they should get that drug. I know that that is frowned on within the NHS’s rational system, but it happens in other countries.

Dr. Gibson: Does the hon. Gentleman agree that behind-the-scenes consultants sometimes campaign through patients and using militancy or TheSun newspaper in order to get their way? Others adopt approaches different from the straightforward methods being suggested today.

Mr. Bone: That is entirely true.

Leaving that aside, however, I want to spend most of my time talking about wet age-related macular degeneration, and the campaign in which I was involved, which provides a clear case of something going fundamentally wrong. As the Minister will know, last year, NICE considered this issue, because of three new drugs that can cure the disease. For those who do not know, wet age-related macular degeneration applies to the elderly—obviously—and those suffering from it go blind unless they get treatment. Until last year, there was no real treatment, and the disease would simply progress towards blindness. Three drugs then came along: Lucentis and Macugen, which were developed purely for this disease, and Avastin, which is a bowel cancer drug but was found to do the same job.

The problem was that NICE made a pig’s ear—unusually—when it published its draft recommendations. A massive row followed, and NICE withdrew its representations and reconsidered. Each year, 30 to 40 people per constituency contract this disease, and they were left with no NICE guidelines. In many parts of the country—in Liverpool, Somerset and Scotland, for example—patients received that treatment automatically. However, the thing that annoyed me the most was that it does not cost hundreds of thousands of pounds, but a few hundred pounds per injection, of which anything from three to 12 are needed to cure and reverse the disease.

I disagree with the term “postcode lottery”—it is no lottery, because my constituents will never win. Ours is
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the worst-funded PCT in the country, according to Government figures, so we will never provide something that someone else does not.

That brings us back to exceptional treatment—I think that my PCT called it low-priority funding. Bear in mind the rapidity of the disease—within three months the patient will go blind: there will be a delay before the patient can visit a consultant; the patient is diagnosed with the disease, and the doctors say, “You will go blind unless you receive the treatment. The good news is that there is treatment that will cure you, but the bad news is that we do not provide it on the NHS,” which is what a consultant at Kettering hospital rightly told my constituents. He then added, “For £1,500 you can come down the road and I will give you the injections,” which seemed rather a lot for an injection. However, someone with a relative who will go blind unless they pay for the treatment, will pay for the treatment somehow.

When I first challenged Kettering hospital, it was very good, admitted that it was wrong, and paid for somebody’s treatment privately. That was one case solved, but then of course I received many more cases, and I realised that the denial of treatment was commonplace. The PCT said, “It is not that we are denying treatment. Either they are exceptional cases, or low priority.” This is what happens: the consultant makes a decision, which goes to a meeting a few weeks later, after which the patient is referred to Leicester for a second opinion, even though the first consultant has already said that they need treatment. Of course, by the time the final decision is taken, the patient will be blind. It is a Catch-22 situation: patients cannot win.

I am very pleased to say that after campaigning in Parliament, and with the help of local media and even the Prime Minister who got involved and said that it was unfair, NICE produced provisional guidelines in the middle of December saying that people should get treated on the NHS, which made complete sense. Not only was it right morally to stop people going blind—there could be no argument about that—but it was financially sensible. When people go blind, the cost of social services is enormous. So it did not even make sense monetarily.

Mr. Letwin: My hon. Friend has reached the point on which I wanted to speak—this should spare hon. Members the need for a full speech from me. His example affected a run of my constituents. As we investigated, it became clear that the regime under which NICE operates does not allow it to consider the knock-on consequences for social security, benefits, tax credits and other forms of personal and social care and support, which might—this is the case here—on any analysis, and regardless of the discount rate applied, hugely outweigh the up-front cost. Does he agree that one of the most urgent necessities, as well as trying to find means of speeding up NICE’s consideration, is to find some means of injecting into the regime a consideration of the genuine economics, so that NICE can operate on a rational basis, rather than being forced to operate on an irrational one?

Mr. Bone: It must be clear to everyone that that is what should happen. There was a prime example of wet age-related macular degeneration in my constituency. Two people were living independently. I think that the
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lovely lady was 84 and her husband might have been slightly older. He had a mild disability and she was looking after him. She then got wet eye in both eyes and the PCT was going to allow her to go blind, which would have meant that the couple could not have lived independently and would have had to be looked after. The cost would have been enormous. Luckily, a private company stepped in and paid for their treatment, but we should not be operating at a level in which a local company steps in because of a media campaign. To its credit, the PCT changed its mind in February and decided to implement the provisional guidelines. However, that is not always the case across the country. This nonsense of exceptional decisions taking weeks and weeks to make does not help our constituents who are suffering from wet eye or cancer. If a cancer patient is fearing for their life and their whole world has been turned upside down—as happened in my family—they do not want to go through a bureaucratic process to see whether they can get treatment. That is fundamentally wrong and totally against what the NHS was set up to do, and I hope that the Minister might have some answers for us.

11.51 am

Dr. John Pugh (Southport) (LD): I congratulate the hon. Member for Norwich, North (Dr. Gibson) on introducing the debate and on having said so many wise things, as he often does, on subjects as diverse as health and taxation. Health care has been rationed from time immemorial, and that is because time and resources are limited. A lot of prioritisation, or rationalisation—whatever one wants to call it—is uncontentious. It is hidden behind the labels that we give to complaints, such as acute, chronic and minor. We are all familiar with prioritising when it comes to the very young, the accident victim, the heart attack patient or the victim of a life-threatening disease. Some prioritisation, however, can be contentious. The treatment of a drug user, a reckless individual, those with a smoking-related disease, victims of irreversible, incurable conditions that nobody knows what to do with, and those in need of cosmetic surgery can be set against therapies for common and widespread and more frequently met complaints. There will always be a public debate about the choice to prioritise, favour or rationalise—to favour treatment of group A at a partial cost to the treatment of group B, or to fund one kind of therapy as opposed to another. Ultimately and inescapably, how we resolve those issues boils down to the issue of society’s values. However, the issue may be how those choices are made. Clearly, there are a number of different ideas about how they should be made. For example, such choices can be made by open democratic debate, by the popular press or by medical experts. Whichever choice is made will be contestable, because either the public—if they make the choice—may not know enough, or the medics may not share our values or be attuned to the values that the public hold. Whatever we do, different and hard-to-explain variations will exist in different areas and hospitals.

Here NICE enters as a kind of solution. It is a very professional outfit, but it does not get us off the hook. We cannot criticise NICE for not getting us off the hook or for attempting and failing. What NICE does is inform choice: it does not make the choice for us. It provides benchmarking of therapies and guidance. If it
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fails to make an appropriate mark or benchmark, it makes a recommendation to the people who have to make the choice—the PCTs—to fund or not fund. The debate primarily is about those PCTs that ignore, bypass or overcome those recommendations, either in general or in selected cases, funding things that NICE thinks they should not.

What the hon. Member for Norwich, North has shown very capably is that PCTs vary, and that they vary for a variety of reasons. They vary across the board and there may also be a lack of internal consistency within PCTs. Certainly, and most culpably, PCTs vary in procedure as to how they address very difficult issues.

[Mr. Greg Pope in the Chair]

I take a slightly different tack from the hon. Member for Norwich, North. I reckon that NICE is always going to leave room for judgments: it is not an oracle. It endeavours to do three very obvious things: first, to assess the cost of drug therapy; secondly, to evaluate the evidence of its benefits; and thirdly, to link those costs to the benefits using a strange unit of measure called the QALY—a quality-adjusted life year. In every stage in that process, controversy almost inevitably lurks. The cost, for example, is normally the UK market cost and not the cost of production plus a reasonable profit. We must be very wary in all such debates—it has been mentioned in other debates in the House—of drugs companies persuading patients and patient groups that the real problem is NHS parsimony and not drug company greed, because sometimes it is the latter.

In exceptional cases in particular, the assessment of the benefit by NICE is also a matter of debate. It considers the statistically average benefit, which ignores the fact that some drugs, for reasons unknown, benefit considerably some, but not all, targeted patients. That was almost certainly true of the Alzheimer’s drugs that seemed to work partially, but not across the board. Doctors can often, and quite legitimately prescribe—the hon. Member for Norwich, North is a doctor so he can correct me if I am wrong—therapies that may work, but cannot be guaranteed in all probability to work. When needs must, they will try something that is possibly, but not necessarily, the likely solution of the patient’s problems.

To make matters worse, the problem of linking the cost to the benefits by calculating the QALY is also methodologically questionable. The QALY is a bit like a unit invented in the 19th century by the utilitarian philosopher Jeremy Bentham called the hedon, which was a unit of happiness. He thought that one could solve all moral and political debates very quickly by totting up the number of pleasure units caused by adopting one policy or another. He recommended the unit to Government. It was a kind of hedonic calculus: one did one’s sums and got the right answer. We could add up on one side the pleasure caused by compensating the millions of losers from the change in the 10p tax band and set against it the embarrassment and discomfiture caused to the Prime Minister and the Chancellor and then we could work out on a scientific basis what we ought to do.

The QALY enjoys the same fate as the hedon, because we can question whether we should or can rate a drug that, for the same money, delivers a 5 per cent. benefit to thousands against a drug that for the same money, not the same price, delivers a 50 per cent. benefit to a handful of severely affected individuals, or exceptional
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cases. How can we, or should we, distinguish a drug that may add a year to the life of a child as opposed to a drug that adds three years to the life of a middle-aged man or five years to the life of a person with a history of voluntary substance abuse?

The most touching case I came across in preparation for today’s debate was in the Library notes. It was the case of a young lad who had to go to Germany to get a drug to sustain him so that he could live on for a few extra years. He was not likely to live for long, but without the drug he would die very quickly. That very vividly made the case that a young life is worth far more than the life of any of us here today. As the right hon. Member for West Dorset (Mr. Letwin) pointed out, NICE benchmarking does not tell us about social effects or the effects on others, which are particularly poignant in the case of children.

NICE offers guidance, identifies downright useless therapies and aids comparison, but it does not and cannot eliminate the need for judgment calls, by the PCTs or by whomever we think ought to make them. The question, which the hon. Member for Norwich, North put well, is whether that judgment should be unfettered and ad hoc, as it currently appears to be. I suggest that, however the PCTs exercise their discretion, or clinicians exercise their discretion in advising the PCTs, they should do so in a reasoned fashion, and not because they are stampeded into it by, for example, a press campaign. The process should be transparent, so that people know what has been done and why. It should be open to both expert and public scrutiny, and it should certainly be accountable, however we want that accountability to work.

Dr. Gibson: Is the hon. Gentleman saying that it would be tolerable to have different results from different PCTs across the country for the same exceptionally used drug?

Dr. Pugh: I suppose that one must ask whether we would be more comfortable with a judgment call being made by whichever national body was to prescribe to PCTs how to do things, or on a more locally accountable basis.

Dr. Gibson: I was talking about non-NICE-approved drugs as well. There are situations in which there is evidence, but NICE has not got around to assessing it. What is the hon. Gentleman’s position on non-NICE-approved drugs across the country?

Dr. Pugh: I am just illustrating a case, not trying to solve the problem for the hon. Gentleman. We want a variety of opinions to come into an assessment, but we do not want the whole issue to be entirely predetermined by a national body.

12.2 pm

Mike Penning (Hemel Hempstead) (Con): I join colleagues in congratulating the hon. Member for Norwich, North (Dr. Gibson) on the excellent way in which he opened the debate. He is a diligent campaigner, particularly on behalf of the cancer community and cancer groups. I congratulate him in advance on his 10 years of work with the all-party group.

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