Question for Short Debate
My Lords, I asked for this debate to highlight, again, the urgent need for progress in research into effective treatments for mesothelioma. This is not a new topic for your Lordships’ House, and the fact that we are returning to it again, and that so many of your Lordships signed up for this short debate, indicates its importance.
As your Lordships’ House has heard many times before, mesothelioma is a terrible disease, among the most cruel of all fatal illnesses. It is inflicted too often on those who contracted it through their occupation which exposed them to the asbestos which causes it, and too often through public service, so members of the armed services and teachers as well as factory workers have been disproportionately affected by it. Yet those suffering from it, and their families, were appallingly treated for decades. It took years of struggle to force insurance companies to discharge their obligations to pay compensation, in the end taking legislation by the previous Labour Government—I am delighted to see my noble friend Lord McKenzie on the Front Bench today, as he was the Minister who did so much to make that happen—and the coalition Government to force them to do this.
There have been inexcusable delays in providing adequate resourcing for research into effective treatments for this dreadful illness. More than twice as much is spent on breast cancer research per sufferer, for example, than on mesothelioma. This matters. Although these are projections and, given the long gestation periods for this illness, they could well be underestimates, more than 50,000 people are projected to die in this country alone. There will be 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 ill-equipped to develop such research on their own.
However, for all these problems, in the past few months since the last time the House debated the issue, there has been significant progress. The most recent Budget allocated £5 million towards research and the setting up of a national mesothelioma centre. I take this opportunity to thank the Minister who did so much to make that possible and who has always been a stalwart supporter of efforts to improve the situation of those suffering from this disease. There is also now the possibility of matching funds from a charitable donor, thanks in large part to the efforts of my noble friends Lord Giddens and Lord Alton and the British Lung Foundation, and two insurance companies, Aviva and Zurich, have over the past two years, to their credit, donated a combined £1 million to the British Lung Foundation’s mesothelioma research programme. However, all this is only a start. It has been estimated that a national centre for mesothelioma research, on a hub-and-spoke model, will need set-up costs of £15 million to £20 million and projected running costs of £3 million to £5 million annually. So much could be done with this funding. Medical science has made extraordinary progress in the past decades. Once-dread diseases have become manageable through the efforts of brilliant and dedicated researchers, and the combination of developments in genomic science and the dazzling new power to process data digitally promises so much more.
We have the infrastructure in the form of the MesobanK, a biobank unique in Europe and one of only two worldwide, which collects tissue, blood samples and clinical data from mesothelioma patients to help accelerate research across the UK and internationally. Sequencing technology is being used to observe gene mutations in mesothelioma which will support the development of future therapies. Advances are being made in immunotherapy and radiotherapy. Other developments in genetic research could produce advances in treatment if sufficient funding is found to run appropriate clinical trials. So where is the extra money going to come from to build on these developments and make further progress possible?
The Government obviously have it in their power to provide it by increasing the sums of money available for research, and the arguments for doing so are compelling. I shall run through them briefly. Apart from the alleviation of terrible suffering in patients, it would save taxpayers money. 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 will produce significant advances in treatment, saving taxpayers some of the huge sums involved in treating mesothelioma sufferers, currently upwards of £75,000 per patient, with total annual costs exceeding £185 million. By 2050, the total is likely to rise above £5 billion. Investing in mesothelioma research can only help to build on our world lead in biomedical research.
Even in these difficult times, £3 million a year would more than treble the amount currently spent and fund a national centre to co-ordinate and develop research. Perhaps a little of all those savings that leading figures in the Government promised us would result from leaving the EU could be made available for research into this terrible disease. I suspect that this will not be the last time the Minister hears that particular argument in the months ahead.
If not from government, where else might funding come from? The insurance industry has historically been implicated in the way mesothelioma sufferers and their families have been failed over generations, but the Mesothelioma Act 2014 offers an opportunity to start a new chapter in that relationship, building on the good examples set by Aviva and Zurich. Surely, the time has come for others in the industry to stand beside them in providing the relatively small sums, in terms of their turnover and profits, to fund research. After all, the more effective treatments can be found, the less they will need to pay out in the long run.
Perhaps the time has come also to look to another business sector that has been heavily involved in these issues over the years. Law firms have received huge sums in fee income from mesothelioma claims over the years. Of course, much of this has been justified, as they fought for justice for sufferers, and no one should ever want to see the victims of this disease denied appropriate legal representation. However, the Mesothelioma Act has streamlined the process for compensation, so perhaps the time has come to look at those fees, with a view either to fixing them, and thereby releasing more funds that could be made available for research, or for the legal industry to step up beside insurers to ensure that research is adequately funded.
Progress is waiting to be made, and there are ways of making it quickly and relatively painlessly, but, if none of these things happen, this campaign will still continue. As we have seen over and over again over the past 10 years, neither your Lordships’ House nor the other place will accept the status quo. I hope that there is action that the Government can and will take, and I hope that the Minister will indicate today that they will at least be prepared to explore one or more of the ways that I have suggested to ensure that the funds so desperately needed for research into this cruel disease will be made available, and soon.
My Lords, I start by thanking the noble Lord, Lord Wills, for introducing this very important topic. Unfortunately, at the beginning of this year, someone I know extremely well was diagnosed with mesothelioma. She is a middle-aged woman who does not have any connection to the building industry and has not lived or worked in a building under renovation—and nor has any of her family. As noble Lords can imagine, therefore, it was an incredible shock. Over this year, I have become quite familiar with the disease and its treatments, so this afternoon I am speaking from the point of view of the patient.
What has really struck me is the stark contrast in the drugs you receive if you treated are under the NHS and those you can receive if you are being treated under private healthcare and are wealthy enough to be able to afford the best possible treatment available. Those treatments can extend life expectancy, which on diagnosis if you undergo all the chemotherapy, is on average about 18 months. The NHS provides the chemotherapy and does an absolutely wonderful job. An operation can be undertaken, although it is a very complex one, to remove the multiple tumours associated with mesothelioma. It can involve removing the diaphragm, the pleura around the lungs and the membrane around the heart. Skilled surgeons are required to undertake the operation and some healthcare companies provide cover for it, although the NHS will not. The cover that most healthcare providers offer does not necessarily meet the full costs of the surgeons, who have to be very highly skilled. Undertaking the operation means that you can double the life expectancy of an individual.
At the end of chemotherapy, what are the options? You can continue with a drug called Avastin, which is licensed for breast cancer but not for mesothelioma. It can be taken in conjunction with the rest of the chemotherapy. It costs £5,000 a pop. Some health insurance companies and providers will cover it, but the NHS will not. You take it once every three weeks, so more than £86,000 a year is required to cover the cost. Some patients have been on it for more than two years without recurrence. Its success varies as people vary, but there have been some great successes.
If—or unfortunately more like when—the mesothelioma returns, what are the options? You can try the chemo again, although sadly it is not always effective. The NHS will provide that chemo. What health insurance companies and the NHS do not cover is access to the latest drugs. The one that is most recommended costs a quarter of a million pounds—it is a one-off treatment and it has to be funded. Under the NHS you have access to UK trials, but because this disease is incredibly rare and has multiple sub-types, the trial you would be best suited to is not necessarily taking place in the UK, so if you want to get on a trial you have to fund your own transport and accommodation costs, possibly for several months while you undergo the trial. Life expectancy can and has been proven to be extended in people who have been fortunate enough to be able to afford this.
As the noble Lord, Lord Wills, mentioned earlier, there are many civil suits as people are able to identify the source of asbestos that triggered their mesothelioma. However, a group of people are unable to identify the source and are totally reliant on the Government’s compensation scheme, which goes nowhere near covering the costs that will prolong their lives. I therefore ask the Government to please look at the compensation scheme to see whether the payments can be upped so that everybody, regardless of their own wealth, can have access to these drugs. It involves a relatively small number of people because only about 2,500 a year are diagnosed with mesothelioma, and only a percentage will not have a civil action. It therefore should not cost the Government that much. It seems only right and fair to make sure that everybody has the opportunity to prolong their life as far as possible.
My Lords, I am most grateful to the noble Lord, Lord Wills, for securing this important debate, and the noble Baroness, Lady Couttie, for outlining the clinical scenarios that people face, often when they are young, as they suddenly realise that they have this devastating disease. More than 2,500 cases are diagnosed each year.
I will focus initially on the iceberg effect; we are seeing just the tip because of asbestos in schools and the worry about that. Some 94% of cases of mesothelioma are effectively preventable because they are associated with chronic exposure to asbestos in one way or another, and we know that three-quarters of our schools have asbestos in place. The number of teachers dying of mesothelioma has been going up from around three a year in the early 1980s to 22 in 2012 alone. That is a marker of developing mesothelioma following chronic exposure.
The Committee on Carcinogenicity of Chemicals in Food, Consumer Products and the Environment has pointed out that we do not know whether children are intrinsically more susceptible to developing mesothelioma following asbestos exposure. However, it seems that the lifetime risk if they are exposed at the age of five is about five times that of someone aged 30 who is exposed to the same amount of asbestos. Therefore it seems that exposing children is storing up problems for the future.
I would like to coin the term “pre-mesothelioma” for the number of people in the population who will probably go on to develop mesothelioma but have no idea about it at all. If we are undertaking research, we have to get to earlier diagnosis, so we have to find ways much earlier on of picking up the markers of transformation to malignancy in the areas where asbestos fibres are stored. At the moment we do not know of any actionable drivers of the disease in order to pick up and identify early markers. There are multicentre trials, as the noble Baroness has just outlined, but the problem is that they are very disparate. That is why there is a desperate need for a single centre in the UK to co-ordinate them. That reminds me of when I was a very junior doctor and the MRC co-ordinated trials into the leukaemias, and it was from those that some advances were made. There needs to be a driver with just about everybody being recruited into a trial if that is at all possible. Currently, patients have to find out about trials and they do not really know where to go. They want to contribute because they do not want the same thing to happen to other people. The other problem is that of course while the MesobanK is in place and the cell lines are coming along, they are not there yet. We need to identify how tumour surface antigens are expressed and detect better markers of early disease.
I remind noble Lords that 60% of patients diagnosed with mesothelioma are dead within a year; in other words, they are palliative care patients. I am afraid that some clinical commissioning groups are not commissioning specialist palliative care services adequately, not at a level that allows them to be integrated with cancer and chest disease services. That is essential to provide psychosocial support as well as support for the rest of the family, and to deal with the devastating symptoms of the disease. Those groups of specialists also want to research some of the effects of the disease when it is not curable.
Lastly, we need data. I declare an interest as chairman of the National Council for Palliative Care. I was very concerned to discover that Public Health England does not plan to carry on collecting a minimum dataset from specialist palliative care services. Without that data we will not know whether what we are doing is improving services for patients. It would cost only £200,000 to refresh the collection and data management process, which in the greater order of things is nothing. Without good data on the number of patients, the people who transform from what I would call pre-mesothelioma into mesothelioma, and the numbers that need palliative care services, we will have no idea whether we are improving.
My Lords, I had always associated mesothelioma with the construction trade. It came as a complete shock that a dear friend—Sylvia, a retired maths teacher, an energetic walker and a very active grandmother—should be diagnosed with the disease. It may well have been contracted 50 years ago when she worked as a teacher in west Africa. It was even more of a shock to discover that it was a death sentence. Sylvia died a troubled and dreadful death five months later. As her husband Geoff said, “This cancer doesn’t allow for peace. There are more sorts of pain than those that can be, and were, dulled by opiates”.
What shocked me almost as much was the struggle of medical researchers to raise money to find improved treatments for the disease. The British Lung Foundation —BLF—and Mesothelioma UK have campaigned tirelessly for more research but with only limited success. Do funders regard it as a marginal cancer? Perhaps they think it will be reduced over time because products containing asbestos were banned in the UK in 1999. How have we become so complacent? Some 2,500 people in the UK are predicted to die each year of mesothelioma. The incidence is increasing, as has been mentioned, for example among schoolteachers. How have we become so blind to the immense suffering of those who contract the disease and of the families who care for them? Although we can hope that the rate will eventually decrease, no such hope is available in developing countries where asbestos continues to be used and where committed people just like my friend Sylvia will continue to work, as will countless members of the local populations.
Research is key yet the BLF’s figures show that funding is absolutely parlous compared with other cancers that kill a similar number, and even the published figures are thought to be an overestimate. I talked to the NIHR Biomedical Research Centre at UCL—I declare an interest as a member of council at UCL. UCL, along with Leicester and Barts, is doing innovative and exciting work with a small amount of funding into genomic damage which might lead to targeted new treatments. Other centres are similarly innovative. How much more could be done if they were better funded?
Companies such as Hugh James, Simpson Millar and Shield Environmental Services have donated. Insurers have helped in the past. Two which have already been mentioned, Aviva and Zurich, have increased their contribution to £1 million over two years, but the final grant is this year. The £5 million grant from the Government this year for a national centre for research is indeed welcome. I hope it will enable increased collaboration with other centres, but it will take £5 million each year to put mesothelioma on a par with other cancers, such as skin cancers, that have the same mortality levels.
A more sustainable model is required. Where is the rest of the insurance industry? Insurers are likely to pay out £11 billion in compensation to people who were exposed to asbestos in the workplace. If only a tiny fraction of this were donated to research, it would be transformational. Saving lives by donating to research could potentially save insurers millions. Will the Minister commit to some strong arm-twisting to persuade the industry to make this a comprehensive and permanent commitment, if necessary on a statutory basis?
I want to make a final point about the carers of those affected. My friend’s husband Geoff said, “Sylvia’s progress wasn’t predictable, no routine could be established, every day involved new challenges”. He was part-retired and had a pension. Supported by the GP and the district nurse, he was able to provide the care that enabled Sylvia to live and die at home as she wanted, where her dignity was preserved in a way she felt it could not have been even in the kindest institution. If he had been on a limited income and had to go out to work, how would that have been managed? Will the Minister tell us what the Government are doing to make that kind of caring an option for anyone suffering a terminal illness of this kind?
My Lords, I am delighted to be able to support the noble Lord, Lord Wills. It gives me the chance to say how much I have appreciated working with him, the noble Lord, Lord Giddens, and other noble Lords in trying to push this issue up the list of political priorities. An indication that the message is bearing fruit was contained in the former Chancellor’s Budget announcement on 16 March that £5 million would be approved for a national mesothelioma centre, which I greatly welcome.
This is also a chance to say that after the Second Reading of my Private Member’s Bill on mesothelioma research the Minister has been unstinting in his efforts to draw together the medical and scientific community, the insurance industry and diverse political interests. It is good to be able to put on record my appreciation of his commitment and engagement. That Private Member’s Bill emerged from a narrowly defeated amendment in your Lordships’ House that would have required the more than 120 insurance companies to contribute to mesothelioma research. The former Minister told the House that he was confident that the four insurance companies that were then voluntarily supporting research would be joined by others. The sad reality, as we have heard, is that the four fell to two, Aviva and Zurich.
As the noble Baroness, Lady Warwick, just told us, insurance companies that represent employers whose employees were exposed to fatal asbestos must recognise their moral obligation, but it is also in their own self-interest to help find the causes of and cures for mesothelioma—a public health disaster that should never have happened. I recently heard from a patient support group that is concerned by media reports that Companies House proposes to destroy defunct company files after a period of five years. Perhaps the Minister will either say a word about this or agree to write to me.
The admirable British Lung Foundation says that we are now at a point in mesothelioma research where we can see real potential. For example, Dr Sarah Martin at Barts Cancer Institute has found that 50% of mesotheliomas lose the enzyme ASS1, which makes the amino acid arginine. As these mesotheliomas depend on a steady supply of arginine from the bloodstream and other cells to grow, Dr Martin is exploring the potential of using existing drugs to block the flow of arginine to these cells, in turn starving them.
Resourcing this and innovatory adult stem cell work, which the noble Lord, Lord Giddens, and I heard about more than two years ago and which we were told would require £2.5 million to bring to clinical trials, is imperative in a country that has the highest recorded incidence of mesothelioma in the world, with 40,000 recorded deaths already, and, as we have heard, a further 2,500 deaths annually. One in five work-related deaths are attributed to mesothelioma. What is the Government’s current estimate of the cumulative number of British people who will die of mesothelioma over the next 30 years? Perhaps we can also be told how many of the 3,000 cancer nurse specialists specialise in mesothelioma care.
With tens of thousands destined to succumb to this fatal disease, it greatly disturbs me that we have no national programme, plan or timetable for the removal of asbestos from our environment, although, by contrast, we have devised one for the Palace of Westminster. Significant quantities of asbestos remain in our homes, workplaces and public buildings, not least in the schools referred to by my noble friend Lady Finlay, and there is a growing incidence of mesothelioma among schoolteachers. As my noble friend said, we should carefully consider the effects on children.
When the Minister replies, I hope that he will refer to the need for a national strategy and to what he might be able to do to draw cross-departmental Ministers together to consider what it should consist of. I hope too that he will look at properly resourced research in the way that the noble Lord, Lord Wills, described, as well as at an examination within his own department of the significant variations in the levels of care, treatment and support, which have been referred to during this short debate.
My Lords, mesothelioma, if I may put it in this way, has a past and a future. The past has seen a long struggle to get the origins of the disease recognised and then to achieve adequate compensation for those suffering from it. That struggle is well documented in the book by Geoffrey Tweedale, Magic Mineral to Killer Dust. Asbestos was originally a magic mineral. He shows in detail just how much industry resistance there was to accepting the link between asbestos and mesothelioma.
I wish to pay tribute to MPs and noble Lords. If your Lordships will forgive me, I should like to single out—it is like a little boys’ club—the noble Lords, Lord Alton and Lord Wills, with whom I have worked closely, but many have been involved in pressing for proper recognition of the disease and for increased compensation for sufferers. That struggle, of course, continues. The British Lung Foundation has been mentioned, and a range of other, more local groups have had a significant impact. It is good news that former members of the armed services who have contracted mesothelioma will henceforth be entitled to significant compensation. However, on the issues of adequate compensation and giving the disease a higher profile in the public consciousness, plainly a lot more needs to be done. I am afraid that Action Mesothelioma Day, designated as Friday 1 July this year, received only scant coverage in the press.
When I say that mesothelioma has a past but also a future, I mean that it is time to stop it being seen as simply a legacy disease—a hangover from a time when asbestos was widely used. I believe—and I hope that people who work more directly in medicine than me will agree—that we are entering a period of potential breakthroughs on the frontiers of medical research, especially as concerns the diverse forms of cancer. The awesome algorithmic power of supercomputers is making possible advances in genetics that could not have been achieved before. A good example—perhaps the most well known—is the supercomputer Watson, which won the amazing game of “Jeopardy!” on American television. It is an ordinary-language, everyday knowledge game. At one point, no one thought that it would be possible for a computer to win it, as it depends on so much everyday knowledge. In terms of being applied to cancer research, as is now the case, Watson and other supercomputers have massive capacities compared with any human researcher. They may not have the same innovative capacities, but their algorithmic powers are extraordinary. Watson can sift through literally millions of scientific papers and use data-mining to suggest hypotheses to be subject to further tests. One should also mention the supercomputer Beagle at the University of Chicago, which is being used to radically accelerate genome analysis.
For the first time ever—perhaps because of the digital revolution, which is one of the things we are talking about—there is a truly global community of scientists working at the cutting edge of medical issues once thought to be intractable. As a result of such ongoing research, we now know that mesothelioma shares certain components, on a genetic level, with other types of cancer. Cancers are in general now increasingly identified genetically rather than described on a more macro level. This means that research into the nature of mesothelioma is of broader significance than was once thought to be the case, and that advancing knowledge about other forms of cancer can in turn be brought to bear on mesothelioma. For these reasons, like other noble Lords, I very much welcome the £5 million towards establishing a research centre, which the noble Lord, Lord Prior, has played such an important part in. As the noble Lord knows, I would like us to raise further sums, which I believe one can do once this funding exists. I would like the centre to have a global orientation linked to, for example, the Pacific Mesothelioma Center in Los Angeles. We should drive research onwards to look not just for improved treatments but for something that is perhaps no longer completely impossible: some kind of cure.
My Lords, I thank the noble Lord, Lord Wills, for securing this debate and giving us an opportunity to discuss this subject once again.
I shall focus my remarks today on how we might improve mesothelioma surgery in the NHS. It is a subject that rarely gets discussed, but one that deserves much more attention than it gets at present. I was delighted that the noble Baroness, Lady Couttie, was able today to highlight some of the options available.
When my sister Annabel was diagnosed with mesothelioma a couple of years ago, one of the treatments available to her was radical surgery. This meant removing her pleura, the lining surrounding each of her lungs. Finding a surgeon with the right experience was not a straightforward process and relied entirely upon a Rolodex network of surgeons that her oncologist had built up over many years, often scattered around the country. Eventually, she found someone to evaluate her, but it took a long time to arrange and the procedure proposed was very risky, which was due in part to the fact that her tumour had grown so rapidly since her original diagnosis. On top of that, the surgeon, although very experienced, had not performed the procedure very often and lacked the familiarity of approach that specialisation usually provides. Given its radical nature and the need for complete tumour removal, should not surgical resection be concentrated at one centre of excellence, where patients can receive immediate attention, new techniques can be researched and surgeons can benefit from training and others’ experience? I am sure that patients will be willing to travel as far as needed to be in the hands of super-specialists.
Given the highly specialised procedure of removing pleura, what research is currently being carried out on resection methods? How does the NHS plan to optimise its approach to such surgery? Does it, for example, appear in the National Institutes of Health research plan? If not, why not? Again, there is huge scope for improvement here.
With regard to new drugs, what research is currently taking place on the impact of preoperative non-steroidal anti-inflammatory agents, given their success in other forms of cancer surgery? This should be another research priority for the NIHR, especially given the chronic inflammation component of mesothelioma. The synergies are such that we ought to be applying the benefits of such cancer research wherever possible. This is a cheap intervention, given that the drugs are generic.
All these issues point to the need for a specialist surgical registry and surgical outcome transparency in mesothelioma. Even transparency on the basics of annual volume and 30-day mortality by surgeon, centre and surgical approach would allow the supervising oncologists to find experienced surgeons in a timely manner. It will also allow for continuous surgical method improvement and best-practice dissemination. This holds true not only in mesothelioma but in less common and rare cancers requiring radical high-risk surgery. These cancer surgical registries should be a priority for the NIHR and NHS England. We need clarity about which body is responsible for their funding, given that they span both quality control and research. I hope that the Minister will encourage the bodies responsible to outline how they plan to drive and develop surgical registries and associated research in these cancers.
My Lords, I, too, would like to focus on the patients—the 2,500 British people who are expected to die each year of mesothelioma, most of whom have contracted the disease as a result of exposure to asbestos. The use of asbestos in industry and construction, although now banned, was a practice that has had a detrimental effect on many lives, and it is our duty now to offer sufficient aid to those it has affected.
Asbestos lurks in many strange places, including, as we have heard from the noble Lord, Lord Alton, this very building. My husband and I recently demolished an old cottage on our property, and we discovered that there was asbestos in the floor tiles with which my late mother-in-law had been living for 40 years. We had to have them removed by specialists. In the 1970s, when I lived in an old farmhouse, I used an asbestos product to fill the rather irregular holes that I used to drill in the walls to hang pictures and bookshelves, having no idea that there may be a problem with it. Concerns about the dangers of asbestos were first raised early in the 20th century, but its use was not outlawed until 1999. For the thousands of cases now arising 40 or 50 years after first exposure, it is our responsibility to ensure that they are given the compensation and support they require. Unfortunately, the median survival time for pleural mesothelioma, once it has taken hold, is 12 months from diagnosis, but this time, and beyond for the dependents of those affected, must be made as comfortable as possible for those who need help.
Over the years, there have been many shortcomings in the handling of asbestos-related cases across the globe, one such case being the fire at the central ordnance depot in Donnington, Shropshire, in 1983. The blaze which released a huge cloud of asbestos into the air has had a huge repercussion which is still being felt today. Paula Ann Nunn, Ellen Paddock, Susan Maughan, Richard George and Marion Groves are just five local people who contracted mesothelioma and unfortunately passed away as a direct result. Mrs Maughan died only last October. Her daughter told the inquest that it took the local authority five days before they told the community so they were exposed to asbestos for all that time. The ash cloud which spread over an area of 15 square miles attracted many small children who played in it as if it were snow which fell in local gardens for days before people were told it was unsafe. We have heard from the noble Baroness, Lady Finlay, how very harmful that could be to those children. My colleague and noble friend Lady Pinnock has told me about many cases in her area of Kirklees, resulting from working for a brake linings factory, long since closed down.
Mesothelioma is generally resistant to conventional cancer treatment. Long-term survival and cures are extremely difficult, but that does not mean that the mistakes of government and industry alike over the past century should not be paid for by compensation to those affected. The current range of available benefits, both lump sums and long-term allowances, must get to the right people at the right time. The Mesothelioma Act 2014, for which we have to congratulate several noble Lords present today, went a long way to help those who had been unable to access compensation because of the passage of time or a lack of effective record-keeping identifying those responsible. Since 2014, a total of £62.2 million has been awarded. However, of those who were unhappy with the result and requested a review of what they were awarded, 25% had their compensation rate altered—I presume upwards. Given that this illness is still an issue affecting thousands of British people every year and that the nature of mesothelioma’s progress means that time is literally of the essence, it is essential that the correct support is awarded without delay in all cases. Given the significant number of cases reviewed since the launch of the scheme, how do the Government intend to learn from those cases and improve the process so that the right decision is made the first time in as many cases as possible?
Can the Minister also outline the ways in which the Government are promoting the compensation scheme, so that those most in need are fully aware of the support available? Given the vital work done by the charitable organisation, Mesothelioma UK, and its invaluable lung nurse specialists, do the Government intend to follow its lead and introduce more specialist nurses into hospitals to support patients?
Finally, to safeguard against mesothelioma cases slipping under radar given the disease’s lengthy latency, are the Government willing to begin actively seeking out those involved in previous incidents, such as the Donnington fire, so as to promote early identification of their disease and to get immediate support to them?
My Lords, this has been a brief but exceptionally well-informed debate. We have heard from noble Lords whose understanding of mesothelioma has been driven by a family experience, a colleague’s experience or a friend’s experience. We have also heard from the medical fraternity and its expertise. I thank my noble friend Lord Wills for initiating this debate and acknowledge the work which he, together with the noble Lords, Lord Alton and Lord Giddens, and others, have done since our last debate on this topic a year ago. We should remember, as have others, the tireless efforts of Lord Avebury, who campaigned persistently for the sufferers of mesothelioma.
Obtaining justice for sufferers of mesothelioma has been a long and tortuous journey. I think that it is fair to say that, until recent times, efforts have been concentrated on seeking to ensure that sufferers and their families have received material support—money—to help them cope with the traumatic effects of this invariably fatal and excruciatingly painful condition. This journey has encompassed access to the industrial injuries disablement benefit; the 1979 compensation Act for work-related mesothelioma where the employer no longer exists or their liability policy cannot be traced; efforts to improve retracement policies; the 2008 diffuse mesothelioma scheme, where there is no nexus; and then the diffuse mesothelioma payment scheme, which is funded by insurance companies. Each of these in its own way has made access to support more secure, however inadequate. We have praised before the work of the noble Lord, Lord Freud, in delivering the 2014 payment scheme and condemned the historic reluctance of insurers to meet their moral obligations. We note that the payment scheme was able to raise payment levels to 100% of average civil claims in 2015. Perhaps the Minister can confirm that this has been maintained. It is understood that it is driven by the benefits of better tracing of employer liability insurance policies. Again, perhaps the Minister could confirm that.
Last year, the Minister acknowledged that it was wrong to look at mesothelioma as a legacy issue. The projections are that it may have peaked, but it will be with us for a very long time. Moreover, the causes of mesothelioma—exposure to asbestos—are still too prevalent in our environment, especially, as we have heard today, in schools. We may be more aware about how it should be managed—the HSE gives advice on it—but we know that practice is not always followed and people will cut corners. The noble Baroness, Lady Finlay, spoke about the effects of this on children. Seeking a cure remains the imperative. When we discussed the Bill of the noble Lord, Lord Alton, there was some disagreement about precisely how much research had been undertaken previously—how much might be generic and how much was specifically focused. The Minister argued that the problem was not lack of funding but a lack of quality research proposals—I think that this was the position asserted by the noble Earl, Lord Howe, in the previous debate on that Bill. Can the Minister now bring some clarity to this issue? What has been the outcome of the strategy to stimulate more research projects?
The Government should be congratulated on their allocation of £5 million of LIBOR fines to establish a national mesothelioma centre. The announcement, of course, made specific reference to service veterans, but this centre is to be a collaboration, it is understood, between four leading institutions which will form a hub—I presume that it will be a virtual hub. It would be good to hear from the Minister, as a practical matter, how the funding of this is to be organised and how it is to go about undertaking and supporting research. It is to be welcomed, but this is still not on equal footing with the rest of cancer research. Nevertheless, “progress is waiting to be made” was the expression, but not without continuing pressure from a range of noble Lords and Members of the other place, those noble Lords who have participated in this debate and, of course, the continuing suffering of those who endure this terrible condition.
My Lords, this has been another really excellent debate on this subject. I join others in thanking the noble Lord, Lord Wills, for raising it again—it is really important to keep it in the public eye. I thank the noble Lords, Lord Giddens and Lord Alton, for collaring me on this subject many times over the last year. It is one of the privileges of being in this House that one is able to take an interest in these issues and try to do something about them—otherwise, what is the point of being here? The point is to make a difference. What this has demonstrated is that if there is persistence—real, dogged persistence, often in the face of all kinds of tribulations—you can make progress. It has been a long and tortuous journey, as the noble Lord, Lord McKenzie, said, but there are signs of progress.
I shall pick up a few points before I get into my speech. First, I cannot answer the point of the noble Baroness, Lady Couttie, in detail today, but the level of compensation is certainly something I shall look at in view of her comments about the cost of these new drugs. This is probably an issue more for NICE and NHS England than the compensation scheme. The noble Baroness, Lady Walmsley, asked whether we are learning from the reviews of these cases, in view of the importance of time. I will certainly look at both those issues. They are, in a sense, related to the remarks of the noble Lord, Lord Freyberg, about the huge benefits of specialisation. I have the guidance from NHS England on the treatment of mesothelioma here. I shall not read it out today, because there is not time, but the noble Lord’s point about having a centre of excellence and looking at the improved outcomes from people doing these things repetitively, many times, rather than spreading very complex surgery over many different sites, is absolutely true. Having proper data in registries which can be made transparent is also a hugely important driver of change.
The noble Lord, Lord Giddens, and the noble Baroness, Lady Finlay, raised the issue of data. Data are hugely important. In a way, if one looks at all the advances that are coming along in cell therapy, gene therapy and the like, in health analytics and big data, the artificial intelligence and machine learning that come from these offer huge potential for improving healthcare in this country. I should also mention that it is clear that many people here have been touched, directly or indirectly, by this devastating disease. That adds not just poignancy but urgency to our discussions. It is interesting how often a patient’s story can bring data to life—data on their own are not enough. It is when you hear about individuals who have suffered and whose lives have been changed or who, indeed, have died, that it is brought home to all of us just how important it is.
We expect the rates of mesothelioma to increase in coming years, due to high exposure to asbestos in the 1960s and 1970s. The noble Baroness, Lady Finlay, raised the issue of schools. It is the responsibility of the Health and Safety Executive, as she will know. The advice is often to leave it where it is and not disturb it—it is not dangerous to children if it is left dormant. If anyone has any evidence that the HSE is not doing the rounds or that there are local authorities in the country where schools are in need of repair, they should bring it to my attention and I will ensure that the HSE follows that up.
Rates of mesothelioma have increased by nearly five times in Great Britain since the late 1970s. In 2014, there were 2,343 registrations of mesothelioma in England: 1,954 men and 389 women. The incidence is expected to peak in the 2020s but, as has been mentioned, it will remain a significant health problem into the 2050s. It is not a legacy disease. It is going to kill many people over the next 30 or 40 years. In 2014, 2,236 deaths were caused by mesothelioma in England, and the latest survival figures suggest that 46% of men survive for one year, compared with 51% for women. Five-year survival is much worse: only 5% for men and 11% for women. It is a death sentence—there is no getting away from that. Others have mentioned that this is a worldwide issue. One research group estimates that, on average, 14,200 cases are diagnosed worldwide every year, and that will be going up, not down.
On the research aspect, there is some better news. On 16 March, the Chancellor announced an award of £5 million to establish a national centre for mesothelioma research. A number of noble Lords have said how important it is that this is co-ordinated—that various universities and research centres around the country do not all have a crack at it, but there should be a national centre for research. This announcement was in response to an application from Imperial College to urgently address the anticipated imminent high mortality rate among Royal Navy veterans and dockyard workers. The award is one of a series funded by the LIBOR fines that have been made since October 2012.
It is envisaged that the national centre will be a collaboration between four leading institutions which have a major interest in the treatment of mesothelioma: the National Heart and Lung Institute at Imperial College, the Royal Brompton Hospital, the Institute of Cancer Research and the Royal Marsden Hospital. It is pretty impressive standing here naming four institutions that are absolutely world class. This is an extraordinary country when it comes to research. The Marsden, the Brompton and all these institutions are fantastic. They bring together expertise in the genetics of cancer susceptibility and in targets for treatment. Of course, the work being done in genomics will have a huge impact on this in years to come—not quite yet but soon, I hope.
The Department of Health has been in discussion with the British Lung Foundation to work together to bring about the establishment of the research network. The plans are not yet finalised, but the aim, which the department supports, is to attract further donations, to be channelled by the British Lung Foundation so that it can continue its role as the body through which voluntary donations for mesothelioma research are being channelled competitively to the best science centres across the UK. As the organisation which currently administers mesothelioma research grants funded from insurance industry donations, the BLF is well placed to do this. I add my thanks to Aviva and Zurich, the only two insurance companies which have lived up, I think, to a very important moral obligation. We should not give up in our talks with the insurance industry to persuade it. It owes a moral duty but, as pointed out by the noble Lord, Lord Alton, it is not just a moral duty; there is also some enlightened self-interest in this. Maybe the lawyers would like to chip in as well; that would be good.
We understand that on 1 November—next week—the BLF, alongside the Association of British Insurers, will be hosting a seminar in this House on the future of mesothelioma research. The seminar will focus on the previous research which the insurance industry has funded across the UK, how it can be built on, and how to ensure that mesothelioma projects across the country tie into the work of the new national centre. Together, the MRC and the NIHR spend more than £1 billion annually. In 2015-16, they spent more than £3 million on mesothelioma research. I will be sending a copy of this debate to Sally Davies, the Chief Medical Officer, and Chris Whitty, the Chief Scientific Adviser, to ensure that they pick up all the important arguments that have been made today.
Last month the Government announced £816 million over the next five years for the biomedical research centres across the UK. These centres host the development of ground-breaking new treatments, diagnostics, prevention, and care for patients in a wide range of diseases. Around £118 million of the funding will be for cancer research and we would expect some of that to support mesothelioma research. The fact that we have this £5 million ought to attract more money from the more conventional cancer research programmes.
In March 2016 the National Cancer Research Institute co-ordinated a meeting with the British Lung Foundation, the MRC, Cancer Research UK and the Department of Health to discuss research opportunities in mesothelioma. This was followed up with a community workshop at the International Mesothelioma Interest Group meeting in Birmingham in May this year and has led to the formulation of a draft research priorities document. This will be further developed at a second workshop currently scheduled to take place in February 2017.
There is room for hope that some progress is being made here. We have to keep the momentum going and the profile high. I think we all accept that some cancers seem to have caught the public imagination to a greater extent than this one, which in a sense puts a greater obligation on us to keep it in the public eye. I have been delighted to do what I can and will continue to do so. Again, I thank all noble Lords for continuing to raise this very important topic.
Committee adjourned at 5.56 pm.