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House of Commons Hansard
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NHS Co-payments (Mrs. O’Boyle)
10 June 2008
Volume 477

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I am grateful for this opportunity to raise the case of my late constituent, Linda O’Boyle, who died earlier this year, sadly, after treatment for bowel cancer. Her case is both terribly sad and hugely frustrating. She was a warm-hearted woman with a great sense of humour who gave much of her life to the national health service and helping others. When she became ill, she had every right to expect that the NHS would be there for her, but it was not. The health service let her down in her hour of need.

Many patients have suffered because the NHS does not allow co-payments, which involve a patient paying privately for a drug not funded by the NHS while continuing to receive the basic NHS package of care. If patients want to top up their care, Government policy requires that free NHS treatment be withdrawn. Often, treatment is eventually delivered within the NHS setting, but the patient is presented with the bill for all aspects of care. Sometimes, as in the O’Boyle case, the patient is forced to go private for everything.

The facts of the case are straightforward. Linda was diagnosed with bowel cancer, and at first her treatment at Basildon and Southend hospitals went well. However, it was decided that she needed a second line of treatment with irinotecan earlier than planned. Then her consultant had to inform the family that treatment was not working, which came as a great shock. The desire to save or extend the life of a loved one is immensely strong. The family were desperate to find another treatment, and the consultant suggested that only cetuximab offered a realistic hope of extending Linda’s life.

However, as we know, cetuximab is not available on the NHS, as it was turned down by the National Institute for Health and Clinical Excellence on the grounds of cost-effectiveness. Whatever one’s views about NICE and the fairness of some of its decisions, the relevant fact is simply that state-funded health care was unable to provide Mrs. O’Boyle with the treatment that her clinician said she needed.

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The hon. Gentleman talks about “free” and “state-funded” NHS care. I remind him of his Thatcherite roots. We taxpayers, including Linda, pay for our care.

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I accept that point 100 per cent. Mrs. O’Boyle had paid for her care through her taxes, of course, which is why her care should have been free, to use my terminology. She should not have had to pay for it. That is the cause of the problem.

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If one accepts that we pay for our NHS care at a different time than we draw the benefit, the false dichotomy that the Government have erected falls to the ground. One wishes to top up the payments that one has already made. Given that the Government want to encourage public-private sector arrangements, I find it extraordinary that they do not want public-individual citizen projects such as the one Linda wished to do.

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I fully accept where the right hon. Gentleman is coming from. I take his point on board, particularly considering—I shall come to this point later—that in many other areas of the NHS, patients can top up without having their care withdrawn. That is a contradiction that the Government need to resolve.

The family decided to pay privately for the drug. Mrs. O’Boyle had hoped to receive cetuximab at the family’s expense at Southend hospital while continuing to receive care as a cancer patient. It is worth emphasising that the family were exceptionally happy at that stage with the care that they had received within the NHS. The issue is not about doctors, nurses or consultants, for they did an excellent job of caring for Linda as far as they were allowed; it is about Government policy, which prevents them from doing their job.

One might have expected the NHS to do everything possible to help Linda O’Boyle—after all, its purpose is to extend life—but the family were told that that would not be the case. The family ended up paying for all the necessary treatment, including care that ought to have been available on the NHS. It is difficult to escape the conclusion that the NHS effectively walked away from a dying woman in her moment of need, a woman who had given most of her life to the NHS.

Naturally, the cost to the family was huge. They also had to meet the cost of private consultations, prescription charges and home nursing care and pay the full market price for irinotecan and cetuximab. Taking everything into account, the total cost was around £14,000. It would have been £50,000 if Linda had survived the full six months of treatment. Seeking to extend the life of loved ones is not an aspiration unique to the rich. People are prepared to make great sacrifices to hold on to someone they love.

With the family’s consent, I raised the issue with some newspapers, and it has received very good coverage during the past few weeks. Such publicity is never easy for the relatives involved, but Mr. O’Boyle and his sons took the decision to go public because they feel strongly that what happened to Linda was wrong and must not happen to other people. I commend them for that attitude. Mr. O’Boyle and one of his sons have joined us for this debate. Many other patients all over the country find themselves in similar situations. The Sunday Times, among others, has done splendid work to give them a voice. The best-known example is probably the breast cancer patient Colette Mills.

As for the arguments used by the Government to prevent patients from making co-payments, I have the benefit of anticipating some of the Minister’s remarks, as I wrote to the Secretary of State earlier in the year about the issue. The reply that I received was, in my view, confused and inhumane. Let us be clear: co-payments are not about taking care from any other patient in order to help another patient go private. A drug is paid for privately, not subsidised by the state. The arrangement represents a move to a Pareto optimum. One patient benefits without any other patient being harmed.

The Government say that co-payments must be banned because otherwise we would be treating patients unfairly and creating a two-tier system, in which all patients would not be treated equally. That argument misses the point. Simply because a patient opts for some non-NHS treatments does not mean that the NHS cannot treat all patients equally in respect of the state-funded care that they receive. Each patient can still receive the same level of NHS care. Patients seeking co-payments are not asking for special favours, preferential treatment or a hand up from the NHS; they are simply asking for their standard package of care to be continued alongside the top-up. Patients whose NHS care has been withdrawn feel, understandably, that they are the ones being discriminated against because of their ability to pay. That cannot be right.

There is a world of difference between treating all patients equally and penalising some patients because they have the means to top up their treatment. It makes a mockery of the Government’s second argument for banning co-payments, which is that a ban is somehow needed to keep the NHS free at the point of need. However, in the case of Colette Mills or Linda O’Boyle, the NHS is the very opposite of free at the point of need. Not all drugs are available on the NHS, because NICE turns down some treatments. Also, free NHS care is withdrawn when patients try to top up. That is not care free at the point of need.

The Government have a novel way of trying to get around the problem: they hide behind semantics. The Government argue that NHS guidance states clearly that someone cannot simultaneously be an NHS and a privately funded patient of the same NHS hospital within the same episode of care and that all NHS treatment for the same condition, such as bowel cancer, counts towards the same episode of care. Ostensibly, it is because the Government do not want to mix private and public funding, but that argument is clearly absurd. For one thing, some drugs are available free on the NHS and others are not. How can two treatments be part of the same episode of care if one is free and the other is not?

If the health service itself has chosen to differentiate between treatments through the NICE process, it is hypocritical to condemn patients for seeking to do likewise. Michael Summers of the Patients Association made that point in a similar way. He suggested that the public does not see the same episode of care as being a crucial distinction. At the end of the day, the public will just say that care is care. The Government are hiding behind the semantics of how one defines an episode of care, because they lack the courage, or perhaps even the initiative, to deal with unjust policy. All that is required is an open mind, and then guidance can be changed.

Another reason why the Government’s position is perverse is that co-payments are already happening throughout the NHS and other public services. If I go to an optician as an NHS patient, and receive a free pair of glasses, nothing is to prevent me from using my own money to buy contact lenses—NHS care is not withdrawn. Likewise, if I go to a dentist and have an NHS filling, and then pay privately to have teeth cleaning or whitening, NHS care is not withdrawn. Meanwhile, we have private beds in NHS hospitals, using NHS equipment and staff. Again, patients do not have other aspects of care withdrawn. We could look outside the NHS: state education is not withdrawn simply because a child has access to private tuition. The state education system is there for everyone, regardless of whether private tuition takes place—state education is not withdrawn.

What is so different about cancer drugs and treatment? If co-payments are good enough for teeth whitening and contact lenses, why are they not good enough when it comes to prolonging, extending and perhaps even saving life? Many people are asking those questions outside this Chamber, but no one seems to have an answer—certainly not the Government. Britain’s cancer survival rates still lag behind the European average, partly because we do not have the same access to the best new drugs. In that respect, we are the poor patients of Europe, which is shameful given that Britain is home to some of the leading drug companies in the world, and to some of the leading cancer research institutes in Europe. The NHS needs all the help that it can get. If anything, we should be empowering, not penalising, patients who opt for co-payments.

This issue will not go away. Many exciting new drugs are coming through the pipeline, and it is forecast that they will be available over the coming decade. Patients and their clinicians will, understandably, want to use them, but NICE will not be in a position to give the thumbs up to all of them. The NHS has a hard choice to make: does it stick with the current policy, born of ideological dogma? Does it hold back patients from accessing the best care for themselves and their families? Does it walk away from dying men and women whose only offence is to use their own money to extend their lives? Or do we, as a nation, do what we can to empower as many people as possible to access the best of the new treatments, without holding back, or penalising, those who cannot afford top-ups? The only civilised answer, for any nation facing this dilemma, is to save, or prolong, life wherever possible. Anything else is a far greater betrayal of the founding principles of the NHS and medicine. This inhumane and illogical policy will one day change. The question is: how long will it take the Government to recognise that, and how many patients will pay the price between now and then?

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I congratulate the hon. Member for Billericay (Mr. Baron) on securing this debate, and join him in publicly offering my condolences to Mr. O’Boyle, and his sons, on the loss of his wife. Unless one has been in such a situation, one can never fully understand what it must be like to experience such pain and misery. However, it is easy to talk about Government being inhumane, but I think that it is a cheap shot—nobody in this situation is inhumane. Politicians on both sides of the House have experienced the same situation, and we should try and avoid making party political jibes. It is an incredibly serious and substantive issue that merits a serious and substantive political and public debate in order to reach the right conclusions.

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I think that the Minister misheard. I did not accuse the Government of being inhumane, but the policy. I want to make it clear that I am certainly not trying to play party politics.

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I accept the hon. Gentleman’s reassurances. We have some very important and serious issues to address as part of this debate.

It is difficult to explain, but it would not be appropriate to talk about an individual case, so I must keep my remarks general at this stage. However, we must be clear that no one should ever be denied the offer of NHS care. That is a fundamental principle, on which our guidance is clear. Patients are entitled to switch from privately funded to NHS-funded status, and should then receive treatment on the same basis as any other NHS patient, and be offered treatment based on clinical need. Any previous status as a privately funded patient should, as far as is practical, neither disadvantage them nor allow them to access NHS care in a preferential way.

More treatments than ever are now available on the NHS, and cancer treatment and survival rates in this country have improved dramatically. However, any publicly funded health care system will always have to make difficult decisions about what treatments are available, and some treatments are not generally available on the NHS. We set up NICE, which is now regarded as a world leader, to assess the clinical and cost effectiveness of drugs and treatments based on the latest evidence. Primary care trusts have a statutory duty to fund the use of drugs that are recommended by NICE technology appraisals, ensuring that proven treatments are available to everybody.

The inevitable consequence of the NICE process, however, is that some PCTS will decide not to fund some treatments. For example, a treatment might not have received a safety licence from the Medicines and Healthcare products Regulatory Agency, or NICE might find that it does not give patients enough clinical benefit to justify the expense. Those decisions are never taken lightly, and NICE will always find itself in difficulty when making decisions seen to deny people drugs that they genuinely believe will make a difference to the length or quality of their lives. There is never a controversy when NICE approves drugs, but it will inevitably follow some of the incredibly difficult decisions that it must make.

There has been tremendous political consensus about the virtues of having a NICE-type system to make some of those very difficult decisions: it is removed from party politics and creates an entirely independent process governed by legislation established in this House. It is important to be clear that it would be inappropriate for Ministers to intervene in and undermine every difficult decision that NICE makes.

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I accept what the Minister says to a certain extent, but in this context NICE is a bit of a red herring. The point here is about co-payments and access to drugs not available on NICE—not about how it makes its decision. Patients should not be penalised by an NHS that then withdraws care simply because they have access to those drugs.

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I accept the hon. Gentleman’s point, but for many patients and families, the difficult decisions that NICE makes are sometimes a great source of angst. They can find those decisions hard to understand because they believe that having access to a certain drug would make a massive difference to their chances of living or dying. It is important to contextualise the debate in that sense.

Moving to the specific issues that the hon. Gentleman has raised, we are not in the business of denying people access to private treatment if that is what they want. A patient may receive both NHS and private treatment for the same condition, in parallel, as long as—this is the key phrase—the two treatments are in separate episodes of care. Our most recent guidance specifies that a patient cannot be both a private and an NHS patient for the treatment of one condition during a single visit to an NHS organisation, but an in-patient can choose to change their status before the treatment begins provided that they are then assessed to determine their priority for NHS care. I reiterate that that has been the position in this country for at least two decades and is not a consequence of any particular NHS reform by the Labour Government. The position is more difficult when a patient seeks to pay for part of an episode of care while expecting the NHS to pay for the rest. That has never been allowed in the 60 years of the NHS.

The legal basis for the ban on mixing private and public funding is in section 1 of the National Health Service Act 2006, which says that NHS services

“must be free of charge except in so far as the making and recovery of charges is expressly provided for by or under any enactment, whenever passed.”

That prevents NHS bodies from accepting payments for NHS services unless that is provided for in legislation. It also prevents an NHS body from providing an incomplete package of care that patients then top up. For example, if a patient’s treatment is the administration of a particular drug, their treatment includes both the purchase and administration of that drug. If an NHS organisation allows a patient to pay for a drug but administers it on the NHS, it is effectively charging for an NHS service.

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May I make a plea to the Minister, who is held in high esteem in this House? I hope that when he goes back he will tell his Department that he does not want to be sent out with a brief like this again. We are arguing not about what the law is—we know what the law is—but for the law to be changed. Will he deal with that?

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I will: I was about to say that section 1 is consistent with the way in which the NHS has considered this issue. My right hon. Friend is not being disingenuous, but it is slightly disingenuous to accuse successive generations of clinicians, politicians and other people who believe passionately in the NHS of not having considered this issue in fundamental depth. Of course, there needs to be a debate on this issue, but it is not a new issue that has emerged in the past few days, weeks or months. It has been a constant debate throughout the 60 years of the NHS.

Ministers have to place on record the legal realities. The hon. Gentleman and others are arguing for a significant change in legislation, which would, arguably, be a significant change in the fundamental ethos that underpins the NHS. That might be a source of difference between us, but to change the legislation and policy in the way that he advocates would be a major shift in policy and legislation. We must also be aware, as I know that my right hon. Friend is, of unintended consequences, which I shall address in a moment.

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The Minister talks about a major shift being required, but the only major shift that is required is having an open mind to changing the guidance. Top-ups, or co-payments, already exist in many areas of the NHS—I have cited some examples. Will the Minister address a specific point? The Department’s ban on co-payments takes the form of guidance rather than instruction, which means that NHS trusts across the country are using their discretion when such cases arise. If the Minister truly believes his argument against co-payments, why does he not close that loophole? He says that this matter has been discussed for quite some time.

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We would have to be persuaded that that would be right, would be in the interests of patients and would take account of the almost daily advances in medical science for health care in this country and globally. To look at this issue in the context of the situation facing the O’Boyle family, it would be difficult not to feel tremendous empathy with the case being made, but we must consider, if we are to change policy or legislation, that there might be a series of unintended consequences that might not be apparent to the hon. Gentleman.

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Will the Minister give way?

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I have given way enough, but I will give way one last time.

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We are not being party political, so we can be generous in giving way. Perhaps I did not express myself clearly, but the Minister did not address my central point. The Department’s policy on co-payments—the ban on them—is in the form of guidance, not instruction. That allows PCTs up and down the country to use their discretion when implementing co-payments or not doing so. If the Minister is absolutely convinced by the case against co-payments, why does not he simply ban them and close that loophole? The Government are allowing the loophole to exist.

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We will have to consider that point as a consequence of this debate. No one is suggesting that we can ignore the sensitive and difficult considerations that the issue of top-ups raises, such as whether NHS guidance is being applied consistently across the country. We have a constant debate in the NHS about the balance between having a universal, national service and having local flexibility, discretion and autonomy. To some extent, the aspiration of all Governments is to minimise postcode lotteries where possible. We know that decisions taken at the local level can, from time to time, be very different depending on the judgments of managers and clinicians, and this matter is no different to that. However, we are willing to consider the implications of the debate in the context of an ever-moving landscape of treatments and drugs that are becoming available.

I conclude by quoting Dr. Colin Trask, the director of clinical oncology at Southend hospital, whose comments are important. He has said:

“At Southend hospital, our annual budget for drugs has gone from £1 million to £6million over the past decade. We have the money to spend on drugs. It’s not about cost. It’s about what is best, not just for a patient’s life but for their quality of life…If it was in their interests, they would get”

the drug. He went on:

“Even if it is not available on the NHS, we would try to find a way to get it for them, by referring them somewhere they could get it, perhaps as part of a drug trial. But if it wouldn’t help them, we would explain the drug is very toxic and would mean them spending their last bit of time in hospital feeling very ill…Also, with cancer treatments, it can be extremely dangerous to mix certain drugs, so there are genuine safety concerns behind these co-payment regulations…these days, people hear of drugs through the media which are hyped as miracle cures when really that not the case.”

Dr. Trask is an eminent clinician, and he has highlighted my point about the potential unintended consequences of simply changing law and policy in a way that some would describe as common sense and fair, but that others would define as opening a can of worms. Such a change might lead to a situation that would not be in the interests of patients and the NHS.

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Does the Minister consider that a doctor’s professional duty to his patients overrides the Department’s guidance—returning to guidance again—where the two may be in conflict?

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Order. I am very sorry, but we have to move on to the next debate.