Mesothelioma (Amendment) Bill [HL]

Lord Wills Excerpts

Friday 20th November 2015 Lords Chamber

[Lord Wills (Lab)]

My Lords, I, too, rise to support this Bill. I congratulate the noble Lord, Lord Alton, on his persistence in pursuing this issue and on the compelling case that he has made this morning for this Bill. It is a privilege to follow the noble Lord who has just spoken and to have heard all the knowledge and experience that he brings to this debate. Indeed, it is a privilege to have heard all the previous speakers.

As your Lordships’ House has heard many times before, and as we have heard again this morning, mesothelioma is a terrible disease. It is remorseless, and it usually kills within 12 to 18 months by gradually strangulating the lungs and heart, bringing severe, constant pain and progressive and dreadful shortness of breath. The strongest painkillers and multiple operations to drain fluid from the chest bring their own side-effects and, unfortunately, as we have already heard this morning, do little to mitigate terrible suffering. This is among the most cruel of all fatal illnesses. As we have heard again this morning, it is all too often inflicted on those who have contracted it through their occupation and all too often through public service. Factory workers, such as those in the railway works in my former constituency, have been disproportionately affected by it. But so too have members of the armed services and teachers.

Despite this, for decades, those suffering from mesothelioma, and their families, have been appallingly badly treated by the insurance companies that should have been looking after them and neglected by successive Governments. It has taken decades to force insurance companies to discharge their obligations to pay compensation. In the end, it took legislation, beginning with that introduced by the last Labour Government and then by the coalition Government, to force them to discharge those obligations. I take this opportunity, if I may, once again to pay tribute to the noble Lord, Lord Freud, for all he did to bring the Mesothelioma Act to the statute book. It really was a very considerable step forward. Yet after all the debates, stretching back years, and after all the calls for Governments to act, there is still no significant progress being made on the adequate resourcing of research into effective treatments for this dreadful illness.

The facts are well known, and we have heard them again this morning. So how can it be justifiable that, based on figures from Cancer Research and the National Cancer Research Institute, more than twice as much per sufferer is spent on, for example, breast cancer research than on mesothelioma? There is no good reason for government inaction on this. Given that the groups this illness strikes hardest so often work in the public sector, the Government have surely an ethical obligation to ensure adequately funded research is carried out.

It may be felt that because asbestos is no longer used in the UK, the actuarial peak of the incidence of this disease is being reached in this country; that this is a legacy disease and, therefore, significant investment in research is not justified. I have heard this suggested, but waiting for sufferers to die off in excruciating pain is an unacceptable basis for any healthcare system. Moreover, the numbers are significant; we have heard them again this morning. Although these are projections—and given the long gestation period for this illness they could well be underestimates—more than 50,000 people are projected to die in this country alone and many more times that number in the rest of the world. Mesothelioma is a global problem. It affects almost everywhere in the world, including some of the poorest countries in Asia and Africa, countries which are ill-equipped to provide and develop such research on their own.

As we heard from the noble Baroness, Lady Finlay, future generations of children in this country are particularly at risk. The figures vary, but at least 75% of schools in this country are estimated to contain asbestos, and the Health and Safety Executive has conceded that a minority of those schools are not doing all they possibly could to manage it. Teachers, caretakers and other school staff are already dying in their hundreds from mesothelioma, and at an escalating rate. We are likely to see that rate escalate still further given the long gestation period for this illness. The noble Baroness, Lady Finlay, has already given these figures, but they are so important that they bear repeating: it is estimated that a child of five is more than five times more likely to develop mesothelioma by the age of 80 than their teacher aged 30. It is also thought—although again there is some argument about exactly how this works—that they are at greater risk because their bodies are still developing, which may make their lungs more vulnerable.

Hundreds of thousands of sufferers all over the world will go on suffering from this illness for many decades to come, which is why the research that this Bill promotes is so necessary. I, and many other noble Lords, have heard Ministers justify this lack of investment in research on the grounds that no good research proposals come forward. But if that really is the case, and there is some dispute about it, the Government need to do whatever is necessary to create structures and an environment in which such proposals will come forward. That would not compromise the Haldane principle—it is simply what the Government should be doing. The most important single action that they could take in that respect is to increase the sums of money available for research. The absence of adequate, secure, long-term funding must clearly be a deterrent to talented researchers committing their careers to research in this area. By turning their back on investing adequately in mesothelioma research, the Government are missing an opportunity to build on our leading position in biomedical research and in an area of such global importance.

The Government are also missing an opportunity to save taxpayers money. I am sorry to bring money into this debate, but it is a matter that must be of concern to the Government, particularly at the moment. Of course, there is no guarantee that any research will produce results, but the experience of research into other cancers suggests that a combination of money and time, and the extraordinary and rapid progress in interpreting the human genome—the noble Lord, Lord Ribeiro, just mentioned the importance of genetics in this field—and huge progress in the size and power of computers, will produce significant advances in treatment. We have already heard this morning from the distinguished medical Peers who spoke about many of the exciting possibilities opening up. This would help save taxpayers some of the huge sums that are involved in treating mesothelioma sufferers.

These are broad-brush estimates, but taking into account the costs of diagnosis, surgery, chemotherapy, radiotherapy, stays in hospital with multiple operations to drain fluid, community care costs, the loss of earnings and so the loss of tax revenue for the one-third of sufferers who will still be of working age at diagnosis, the costs are likely to be upwards of £75,000 per patient. As some 2,500 patients are currently diagnosed in the UK every year, annual costs are likely to exceed at least £185 million. With perhaps up to 70,000 new cases between now and 2050, the total could well rise above £5 billion.

There is a clear ethical imperative for the Government to act now on research into this terrible illness. There is a clear humanitarian imperative. There is a clear financial imperative. There is simply no reason for the Government not to act. The Government and their funding agencies could easily find the funds themselves, even in these difficult times: £3 million a year would more than treble the amount currently spent and help fund a national centre to co-ordinate and develop research.

This Bill offers an alternative route to funding, through a levy on insurers. It will raise money from all those insurance companies that evaded their obligations for so many years, and it will share the existing burden more equitably between those very few companies that have, so commendably, honoured their obligations and the rest of the insurers. Quite apart from the continuing moral responsibility of that industry as a whole to atone for its historic mistreatment of sufferers of this dreadful disease, the sum of money to significantly improve the research effort on a sustainable basis is a tiny fraction of the overall amounts that those insurers saved for decades, and an even tinier fraction of the sums that they will probably have to continue to pay out for decades to come. Does anyone seriously think that £3 million a year would trouble an insurance industry that pays out £187 million a day to its customers, which is more than £68 billion a year?

Despite all these arguments for action, as we have heard, the Government appear to have done nothing since the noble Lord, Lord Alton, raised this issue in your Lordships House two years ago. Their lack of interest is, I am afraid, demonstrated by the Whitehall reaction to the work that I and the noble Lord, Lord Alton, and my noble friend Lord Giddens have done on exploring the possibility of setting up a national mesothelioma institute, which the noble Lord, Lord Alton, referred to in his opening remarks. This would be done on a hub-and-spoke model, involving worldwide collaborations to drive forward research into tackling this terrible disease on a global basis.

We made considerable progress with medical researchers and non-governmental organisations and the possibility of significant funding from charitable sources, but the time is now right to involve government. The sums are relatively small, but it needs some limited participation from government. The Department of Health has been supportive; in particular, I pay tribute to the Chief Medical Officer and her officials, who have been extraordinarily helpful and demonstrated great empathy with the need to do something to improve outcomes for those suffering from mesothelioma.

But the global dimensions of the problem and the nature of the spending review mean that other Whitehall departments need to take an interest as well. The two other key departments, DfID and the Treasury, have refused to meet us. It is one thing to refuse to do something; it is quite something else to refuse even to meet to discuss doing something to alleviate terrible suffering. It might have been thought that anyone going into public service, in whatever capacity, for whatever reason, might have wanted to spend a few minutes exploring the possibility of helping those suffering so terribly from this illness, but obviously not. To be fair to the DfID officials, I should say that they emailed to say that we could look at their website—next year—to try to identify funding opportunities.

In the short time that he has been in your Lordships’ House, the Minister who will reply to this debate has won respect from all sides of the House for his knowledge, for his experience and for his willingness to engage in dialogue, but he has done so perhaps above all for his determination to seek continuing improvements in healthcare. Although he may not be able to commit to support this Bill in its entirety today, I hope that he will at least feel able to recognise that it seeks to put right a long-standing injustice, and that there must now be action to promote research that might bring relief to all those who have suffered from this illness and all those who will suffer in the future. I hope that he will say today that, if this is not exactly the way in which the Government prefer to address the problem, they will find some other way of addressing it and do so now without any further delay.

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[The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)]

My Lords, it is always very dangerous when you are told to tear up your lines to take, however tempting that might be. The noble Lord, Lord Alton, whom I have only met once before, which was quite briefly yesterday, told me that he was a street-fighter so I come here forewarned that he is not as he appears. I suspect that as I stand here, he is sharpening his knife and polishing his knuckledusters to set about me in a few minutes’ time. I thank him, though, for bringing this issue to the House. It has been a fascinating debate. I am by no means an expert in mesothelioma but I feel much better educated about this issue now than I did two hours ago.

The debate has been trebly compelling because it has brought together people with authentic and tragic personal experience: the noble Lords, Lord McNally and Lord Freyberg, and the noble Baroness, Lady Murphy—and, right at the end, the noble Lord, Lord Campbell-Savours. That personal connection with this terrible disease is very powerful. The debate has brought that together with the clinical and medical academic knowledge of the noble Baroness, Lady Finlay, and the noble Lords, Lord Winston, Lord Kakkar and Lord Ribeiro, which is a very powerful combination. When you add to that the broad knowledge of other noble Lords who have contributed, whose interest in the subject goes back many, many years, it produces a very powerful cocktail.

Clearly, mesothelioma is a terrible and devastating condition. There is no cure and, as the noble Lord, Lord Winston, reminded us, it is a very difficult illness to tackle. Uncertainties remain about the best available approaches to diagnosis, treatment and care. It affects thousands of people. In my mind before this debate, I thought of it very much as a legacy disease—one that would gradually wither away. The noble Baroness, Lady Finlay, commented that many children will be suffering from this disease in 20, 30, 40 or 50 years’ time. As the noble Lord, Lord Giddens, mentioned, this is not just an English disease, although we have a particularly high incidence in this country; it is an international, global illness. The noble Lord mentioned it affecting literally millions of people.

It is therefore absolutely right that mesothelioma research has been discussed many times both in this House and in the House of Commons. I suspect that whatever the outcome of today’s debate and when we discuss the matter again in Committee, knowing the reputation of the noble Lord, Lord Alton, he will never let this sleep. I imagine that we will be hearing from him on many future occasions.

I want to talk about two aspects at the beginning. The first is funding. Funding is needed for research—that goes without saying. The four largest insurance companies have previously made a donation of £3 million between them and more recently, as has been pointed out, Zurich and Norwich Union have donated a further £1 million. That has helped to support valuable research into the disease, but a much higher level of funding has come from the Government through the Medical Research Council and the NIHR. Together, those funders spent more than £3 million in 2014-15. The MRC is supporting ongoing research relating to mesothelioma at its toxicology unit. It is also funding one current fellowship. The NIHR is funding three projects through its research programmes, and its clinical research network is recruiting patients to a total of 11 studies. In view of the comments of the noble Lord, Lord Winston, I can highlight that the NIHR is co-funding experimental cancer medicine centres with Cancer Research UK. These centres are supporting studies in mesothelioma. Money is also available through European Union research funding programmes. I am delighted that the University of Leicester is a partner in a successful bid for nearly €6 million for research on immunotherapy to treat malignant mesothelioma.

[Lord Wills]

I thank the Minister for giving way so early in his speech, but these figures are very important. Is he aware that the British Lung Foundation has done its own study on how much money is specifically directed to research into mesothelioma? A lot of the work that he just described may well have implications for mesothelioma, but it is generic. The British Lung Foundation figure specifically for mesothelioma research is £820,000, not the millions he has been talking about. Does he accept those figures in the context of what I have just said?

[Lord Prior of Brampton]

It is hard to know what the right figures are. After this debate, we need to sort out exactly what the figures are.

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[Lord Prior of Brampton]

I think that we are into some definitional issues here, to be honest, from what the noble Lord, Lord Winston, said, and from the figures that I gave earlier, which I am not making up—they are figures that have been given to me. We should come back with some greater clarification and perhaps some closer definition of what the funding figures are.

My impression, although it may be wrong, is that the essential problem is not a lack of funding but a lack of sufficient research applications. Of course, I accept that there is a connection between the two, which I shall perhaps come back to in a minute. The MRC received no mesothelioma applications in 2014-15, and only one in the current year. I want to clarify and stress that the work being funded is of high quality, consequent to high-quality applications. In response to questions raised by the noble Lord, Lord Kakkar, and others, the Government have taken measures to stimulate an increase in the level of research activity. Patients, carers, clinicians, academics and funders have worked in partnership with the James Lind Alliance to identify what the priorities in research should be.

I imagine that some noble Lords will have read the report by the James Lind Alliance, but for those who have not I can say that, following a survey and a workshop, the top 10 mesothelioma research priorities were announced in December 2014, and the NIHR published a final report from the priority-setting partnership in July. In advance of the identification of research questions by this partnership, the NIHR highlighted to the research community that it wanted to encourage research applications in mesothelioma. The NIHR subsequently invited researchers to apply for research funding, in particular to address the research questions identified by the partnership. Eight NIHR programmes participated in this themed call. Fifteen individual applications have been received, of which two have been approved for funding to date, two are under review, and 11 have been rejected. Some noble Lords may think that that is a very high level of rejection, but it is broadly consistent with the overall funding rate for applications to NIHR programmes, which is roughly about one in five.

In addition, the NIHR Research Design Service continues to be able to help prospective applicants to develop competitive research proposals. This service is well-established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research.

The Government are not predisposed to support the Bill, but there is something that we ought to consider—perhaps outside the Chamber. We believe that the existing process for accessing research grants works well; we do not believe that money is the real shortage. It is interesting to note that the Government’s spend on research for medicine is a little over £1 billion—a very significant sum—but the Government are not keen on hypothecated grants for research. However, I have been thinking about this very carefully over the last couple of days, and the noble Lord, Lord Alton, touched on it slightly obliquely at the beginning, but it is an important point.

When the 2014 Bill went through Parliament, it was felt by the Department for Work and Pensions that the highest levy that could be taken from the insurers without forcing them to pass it on through higher premiums into industry was 3%. I understand that there is a shortfall between that 3% and the actual level of claims being made. I wonder whether the 1% that is being asked for in this Bill could be funded through the shortfall within the existing levy. That might be an avenue worth exploring. I say that because at the moment the fact that we are relying on two insurance companies is not equitable. Why should Zurich and Norwich Union cough up £1 million when other employers’ liability insurers are not contributing? This needs further discussion, but I wonder whether there is a way through this and whether we could not use the shortfall in the existing levy.

[Lord Wills]

What the Minister has just said is so profoundly important that I want to ask him to clarify it a little further. I moved an amendment to the then Mesothelioma Bill precisely to that effect: if there was this gap between the 3% that the insurers were prepared to pay and the 2.25% that the government actuaries thought would be needed, that would be devoted not to the insurance industry’s profits but to the relief to this terrible illness. At the time, the Minister in this House was quite resistant, but when it was debated in the other place the Minister there was quite clear. We heard the quote from the noble Lord, Lord Alton. Some months ago, when I asked a Parliamentary Question for Written Answer about this point, I recall that the Government said that they were not yet in a position to say whether there was a shortfall. I think I heard the Minister say that he believes there may be such a shortfall. If he said that, this is profoundly important as a way forward, as he suggests, so I would be grateful if he would clarify that.

[Lord Prior of Brampton]

If there is a shortfall—and there may be a shortfall—given that that levy is raised from the industry on an equitable basis rather than relying upon two or three insurers to do it on a voluntary basis, that strikes me as a better approach. The point has been made that compensation payments are somehow different from funding research, but it strikes me that the two are very closely related. I am just putting it out there for further discussion, and I would like to pursue that discussion with my noble friend Lord Freud, who is probably the expert on our side of the House on this matter and was intimately involved with the Bill which came through the House in 2014. I would like to have that discussion with him and perhaps with the noble Lord, Lord Alton.

I have not dealt with the veterans issue or the schools issue. I shall deal with them by letter, if that is all right. They are both extremely important. The situation with the veterans and the MoD is under active consideration by my noble friend Lord Howe. I will write to the noble Baroness, Lady Finlay, if she is happy with that, setting out the situation on schools in Wales.

The instinct of the Government is not to support the Bill, for the reasons I have given, but there may be a way through this which we are able to explore over the next month or two.