(4 years ago)
Lords ChamberMy Lords, I would be glad to track down the noble Baroness’s letter and get her the answer that she so desires.
My Lords, I have every sympathy with the unique pressures being placed on the Minister and his department this year. It was inevitable that mistakes would be made, but the crucial thing is to learn from them, not least because, however encouraging recent news has been, there are still considerable challenges to be overcome before the country can return to normal. When Ministers refuse even to address questions asked of them, it hardly encourages belief that they are prepared to learn lessons from recent months. I have asked many questions about the failure to utilise efficiently the much-needed capacity provided by the partnership between the private sector and the NHS. The responses were a masterclass in a wilful refusal to answer questions. Does the Minister not recognise the damage done by such public denial of the facts?
My Lords, I regret enormously that the noble Lord feels that we have, in any way, avoided the facts. We are absolutely committed to learning the lessons of Covid, which will be profound. I note that my right honourable friend the Secretary of State was in front of the House of Commons Select Committee on health for two and a half hours yesterday, answering exactly those questions. It was an illuminating and important discussion and I very much hope that this House will have an opportunity to do the same.
(4 years, 1 month ago)
Lords ChamberMy noble friend is entirely right; in any epidemic, nosocomial infection is one of the greatest challenges faced. If you want to find a recent infection of Covid, the best place to find it is where there is someone already with the disease, because that is the way that epidemics work. Hospitals necessarily have a high concentration of those with the disease. It is true that during the early months of the epidemic, when there were challenges with PPE and when practices within hospitals were not as disciplined as we would have liked, nosocomial infection, as it often is in epidemics around the world and throughout history, was a big challenge in hospital care and social care. That has been extremely well documented. However, I pay tribute to colleagues in the NHS who have come a very long way in the administration of PPE, confinement practices and infection control. The nosocomial infection that we are seeing is at dramatically lower rates than it was in the past, and that is due to the hard work and science of those in the healthcare sector.
The Minister will be aware that during the first lockdown the utilisation of beds in the private sector, under its partnership agreement with the NHS, was 20%. What reassurance can the Minister give that there will not be a similar underutilisation of capacity for testing in the independent sector in the weeks and months ahead?
My Lords, I am not sure that I entirely understood the question. In terms of the private beds that we intended to use, that capacity was extremely valuable as a fallback during the first wave, but I am pleased to say that it was not needed. There is some testing in the private sector, but we are not leaning on that at the moment. The testing that is done by the Government is through test and trace, and we are committed to using as much of that capacity as is needed.
(8 years, 1 month ago)
Grand Committee
To ask Her Majesty’s Government what action they are taking to support those who have contracted mesothelioma.
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.
(9 years, 1 month ago)
Lords ChamberMy 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.
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.
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?
It is hard to know what the right figures are. After this debate, we need to sort out exactly what the figures are.
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.
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.
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.
(9 years, 2 months ago)
Lords ChamberThere is no doubt that what the noble Baroness says is true: the impact on other parts of the economy will be significant. It is also true that the impact on the healthcare system of reduced resources in social care will have an effect, which is why we are developing the better care fund and why we believe that more of the health and social care budgets should be pooled and used as one. Again, that is an integral part of the Five Year Forward View. At the risk of being boring, I am afraid that I will repeat myself: we will have to wait until the end of November before we know what the financial settlement is.
My Lords, in view of the undoubted stringency of the forthcoming spending review, and all the pressures on social budgets we have just heard about, what words of comfort can the Minister give that care leavers, who are already an extremely disadvantaged group, will not be further disadvantaged as a result of all these financial pressures?
I think that the only word of comfort I can give is that in the long run we will have a well-funded social care sector and a well-funded NHS only if we have a successful and productive economy, and we will have a successful and productive economy only if we can get government borrowing back to where it needs to be and so can begin to eliminate the government deficit.
(9 years, 5 months ago)
Lords ChamberMy Lords, if Members of this House have not read the report by the ombudsman, I recommend it. It consists of 12 short, fairly straightforward case histories, which make for appalling reading. There are many nurses in hospitals and community settings who deliver wonderful care. The issue is their ability. The CQC is now making regular inspections of end-of-life care in all its hospital visits. It is one of the eight core services that it looks at. It has found that in the vast majority of cases, end-of-life care is caring. The noble Baroness asked why such care is so variable. I think that in hospitals it is partly because they are often busy places. They are not ideal places to die in. Who would wish to die in a clinical setting in a very busy ward unless they had to? That may be a part of the explanation.
My Lords, my father-in-law died this February. He died at home, surrounded by those he loved and who loved him. However, he died in profound agitation because he was denied the palliative care that he so desperately needed. The local GP surgery said that that had to be delivered by the local Macmillan nurse. She was rung repeatedly throughout the day but never answered the phone. Finally, at 4.30 pm she picked up the phone and said that she could not come until the next day—even when the nurse who was looking after my father-in-law said that he was likely to be dead by then. She said there was nothing she could do about it and rang off. He died later that evening, without the comfort of any palliative care. What assessment have the Government made of the ability of Macmillan nurses to deliver palliative care at home?
The noble Lord describes a truly tragic situation and I am very sorry for him and his family that this happened. I am afraid that variation is at the root of this. There are many parts of the country where good local care is delivered. The noble Lord’s story illustrates the fact that it is not just where people die but how they die that matters. It is clearly preferable that people should die in their own home with their loved ones, surrounded by the love that the noble Lord described, but symptom control, pain relief and everything that goes with palliative care are just as important. Indeed, most of the stories in the ombudsman’s report are about a lack of symptom control for people dying in pain. That can happen at home, as in his father-in-law’s case, but it can equally happen in hospitals. NHS England is reviewing this whole area and will come to some final views towards the end of this year, when I might report back to the House.
(9 years, 6 months ago)
Lords Chamber
To ask Her Majesty’s Government what steps they are taking to encourage innovation by NHS England.
My Lords, I start by welcoming the Minister to his new role and to what I understand will be his maiden speech. We overlapped for one Parliament in the other place, where he had a reputation as a thoughtful and conscientious Member of Parliament. Since then he has made a distinguished contribution to the work of the NHS. I am sure that he will make an equally distinguished contribution to the work of your Lordships’ House, and I am very much looking forward to his maiden speech.
It is generally accepted that the NHS is under unprecedented pressure from a combination of progress, a population living longer and longer, and extraordinary advances in medical science and technology, coupled with the need for rigorous discipline in public finances and with ever-increasing public expectations of what healthcare should deliver. All this taken together means that the NHS faces complex and difficult decisions in every area of its work. This Government in their previous incarnation between 2010 and 2015 frequently said that their approach to tackling these challenges was based on the principle of doing more for less.
It is clear that innovation has a critical role to play. In 2011 an important report from the Prime Minister’s Council for Science and Technology said that,
“success in delivering the government’s aspirations for healthcare … will depend on a fundamental cultural change within the NHS, supporting innovation in ways that increase health benefits while driving out costs across the system”.
I have asked for this debate today to highlight how in one particular case the Government and NHS England are signally failing to do this. That failure is causing unnecessary suffering and wasting taxpayers’ money, and it highlights what seem to be systemic problems with NHS England. I hope in his maiden speech that the Minister will be able to commit to some positive ways forward in addressing this failure.
Giant cell arteritis is a form of vasculitis, an inflammatory disease of blood vessels most commonly of the arteries in the head. It is, in effect, a stroke in the eye. If it is diagnosed in time it can be easily and cheaply treated with a course of steroids. Untreated, it leads to blindness in 25% of cases. It has been estimated that around 3,000 patients every year go blind as a result of giant cell arteritis—3,000 people losing their sight needlessly because doctors failed to diagnose their condition in time and provide sufficiently rapid treatment.
Why are thousands of these avoidable tragedies happening every year? It is partly because the symptoms are everyday. There are headaches associated with scalp pain, pain in the jaw or tongue, and it is also common to see low-grade fever, loss of appetite, depression and tiredness. Once symptoms present, an early temporal artery biopsy or ultrasound can confirm a diagnosis and enable urgent treatment to start to prevent blindness. However, far too often GPs miss the symptoms, because this is often an affliction of older people and the symptoms are too commonly categorised as merely the inevitable aches and pains of ageing.
For four years I have sought an estimate from the Department of Health of the cost of such unnecessary loss of sight, and as far as I am aware it still has not produced one. Maybe the Minister will surprise me today. My rough calculations—very rough—suggest that it could be around £1 billion over the lifetime of this Parliament. That is based on the fact that the average annual costs to the Exchequer of blindness for an individual exceed £25,000 a year, so the costs of those 3,000 people going blind every year unnecessarily run to £75 million a year. Of course, this cost accumulates year on year, so over five years the total costs of such unnecessary blindness could come to between £1 billion and £1.1 billion. When that is offset against the costs of the steroids, that still leaves a net cost to the taxpayer of around £1 billion.
However, that is just a calculation of the financial costs. It takes no account of the human costs: the incalculable misery of those losing their sight, mostly pensioners, already at the most vulnerable stage of their adult lives. It does not mean the loss of vision alone, although that is tragic enough. It increases mortality and the risk of cardiovascular complications, such as heart attacks and strokes, and of aneurysms. It also means all too often the loss of independence, with elderly people who had been able to live in their own homes now being forced to go into residential care.
This is not inevitable. There are significant differentiating characteristics about the symptoms, so giant cell arteritis ought to be easy to diagnose as long as GPs are sufficiently sensitised. Headaches are common, but sudden onset headaches and headaches over the temples, for example, are less common. Those categories of headache are key indicators of giant cell arteritis. For example, jaw and tongue pain is a red flag warning.
Dedicated clinicians and support groups have been working tirelessly to reduce the suffering from this avoidable loss of sight by raising awareness among clinicians. The British Society for Rheumatology, British Health Professionals in Rheumatology and the Royal College of Physicians produced guidelines for the management of this complaint five years ago, but the persistence of problems with diagnosis and appropriate treatment suggests that these guidelines are not having the desired effect.
Recently, a remarkable clinician, Professor Dasgupta, has pioneered in Southend a cheap and cost-effective fast-track pathway for diagnosis and treatment. The results of this pilot have been validated by the Department of Health and they show a dramatic reduction in the numbers suffering sight loss from this condition. Rolled out nationally, it would save thousands of people from losing their sight needlessly, it would spare them and their families misery and suffering, and it would save the taxpayer around £1 billion over the lifetime of this Parliament.
In January last year, Sir Bruce Keogh, the medical director of NHS England, wrote to me saying that this fast-track pathway,
“represents a new way of doing things which is better and costs no more. We must learn from such innovative examples”,
and he suggested a meeting, saying that it should,
“seek to determine how to disseminate this good practice effectively. It is by finding ways of smoothly industrialising these new ways of doing things that we will improve quality in a way that is cost effective”.
At this point it seemed that NHS England was providing a model for innovation in healthcare. Sadly, it has not turned out to be quite like that. That meeting was held in April last year, and 20 minutes into it one of the patients’ representatives, an experienced and distinguished journalist, passed me a note that read simply, “We’ve got a problem”—and indeed we had. The NHS officials at the meeting clearly saw the smooth industrialisation and effective dissemination of the fast-track pathway as a very low priority. In the end, as a compromise it was agreed not that there should be a national rollout industrialising the fast-track pathway but that milestones towards it should be agreed by last summer. That never happened. When I tried to find out why, I was told it had never been agreed, even though I and the three other people present at the meeting who were not NHS officials are all clear that it was.
Instead of finding a way to industrialise this new way of doing things, as Sir Bruce Keogh said he wanted to do, NHS England and the Government seem to be relying on three alternative approaches, none of which represents anything like an adequate response. First, there are the guidelines, which are clearly not having a significant impact on the problem. Secondly, NHS England has been developing proposals to establish local rheumatology networks. On 18 March this year, Sir Bruce Keogh wrote to me, saying that,
“discussions on the development of these networks have started in a number of areas”.
In the 17 months since Sir Bruce told me that he wanted,
“to disseminate this good practice effectively”,
all that has happened is that discussions have started on localised rollouts. In that time a national industrialisation of this fast-track pathway could have prevented more than 2,000 people losing their sight. Finally, NHS England has invited Professor Dasgupta to contribute to the NHS innovation exchange portal. I wonder how much greater an impact NHS England thinks that portal will have over and above the existing guidelines—not very much, I would guess.
Why is more not being done? Ministers have said that the Health and Social Care Act 2012 means that this is now entirely a matter for NHS England. NHS England has produced two excuses. The first is that the Health and Social Care Act prevents it taking any action to ensure a national take-up of the fast-track pathway. It is not clear to me why this is. Admittedly the Act is extremely complex and impenetrable. Part 1 on its own runs to 110 pages. I have asked Sir Bruce Keogh to tell me which part of the Act he is relying on to make this assertion, but I have not yet had a reply.
However, the NHS England website pages on commissioning seem to suggest that it could do more. It says that,
“for rare disorders, services need to be considered and secured nationally”.
It does not say what is meant by “rare”, but NHS England always cites research showing that the incidence of giant cell arteritis is 20 per 100,000 people, which sounds rare to me. It seems that, on its website at least, NHS England concedes that it could be doing a lot more than it is telling me it can. In any event, if it turns out that the Health and Social Care Act does prevent NHS England taking the kind of action Sir Bruce Keogh said he wanted to see, there is clearly something wrong with that Act, and the Government should seek the first available legislative opportunity to amend it accordingly. In these circumstances, I hope the Minister might be able to commit to doing that if it proves necessary.
For the second excuse, and I am winding up now, I will quote Sir Bruce Keogh again. He said:
“Changing clinical pathways and processes require dedicated resource. Given the scale and complexity of the challenges facing the NHS, clinical and management resource has to be prioritised. Not everything can be done everywhere at once”.
As a generic statement, that sounds reasonable enough. Who could disagree with it? But it fails to explain why the fast-track pathway is such a low priority when it could rapidly save resources that could then be directed elsewhere. Sir Bruce’s remarks about industrialisation last year suggested that it would be given a higher priority, precisely for that reason. Can the Minister explain what has changed? Crucially, that generic statement fails to explain why the avoidable loss of sight appears to be given such a low priority by NHS England. Again, I would be grateful if the Minister could shed any light on why that is so.
This case history suggests that NHS England is afflicted by a bureaucratic sclerosis that prevents it innovating in the way that the NHS so desperately needs. Moreover, it is clearly being hamstrung by the Health and Social Care Act either because there are real constraints on it, which hinder the effective dissemination of innovation, or because the legislation is so flawed that it is impossible to understand and is being used as an excuse for that bureaucratic sclerosis.
I hope that the Minister will use the occasion of his maiden speech to agree to take some action to sort out this profoundly unsatisfactory situation and to ensure the delivery of what Sir Bruce Keogh pledged in January 2014: to disseminate the good practice of this fast-track pathway effectively, and to find ways smoothly to industrialise it. Perhaps a good first step would be for the Minister, together with Sir Bruce Keogh, to agree to meet me and clinicians’ and patients’ representatives to discuss how best we can make progress. I hope that he will agree to do so, and I look forward to his response.
(9 years, 9 months ago)
Lords Chamber
To ask Her Majesty’s Government what assessment they have made of the impact of the Health and Social Care Act 2012 on innovation by National Health Service clinicians.
My Lords, the Act created the architecture within which NHS England’s innovation, health and wealth strategy is being implemented. As part of this, the innovation scorecard shows a real improvement in the uptake of certain NICE-approved innovations. The NICE implementation collaborative has also resulted in increased national spend on key technologies. The department and NHS England have commissioned an independent evaluation of innovation, health and wealth, which is expected to be completed by winter 2017.
I am grateful to the noble Earl for that Answer, but does he recognise that there is a significant gap between those fine words and what is actually happening on the ground? To take the case of giant cell arteritis, for example, 2,000 to 3,000 people go blind needlessly as a result of it. I hope the House will indulge me for a few seconds if I set out this important example. The condition is easily treatable. Professor Dasgupta, in Southend, has pioneered a fast-track pathway for diagnosis and treatment which has reduced the numbers of people going blind by two-thirds. Rolled out nationally, that would save thousands of people every year from going blind. It would save them and their families needless misery and suffering and would save the taxpayer hundreds of millions of pounds every year.
In January, Sir Bruce Keogh, the medical director of NHS England, wrote to me and said that this “represents a new way of doing things which is better and costs no more. We must learn from such innovative examples”. Is the Minister aware of what has happened since he wrote to me? Thousands of people have gone blind—
Noble Lords opposite ought to listen to this; the people who suffer most from this are elderly and it is very much in their own interests to listen. Nothing has been done to roll out this innovative pathway. Can the Minister not accept that having a few guidelines is simply not good enough? Can he not accept that since the Health and Social Care Act came in, there has been no good example of good practice in this area?
My Lords, I recognise the noble Lord’s close interest in this important topic. We recognise that early diagnosis and treatment of giant cell arteritis is extremely important to preventing sight loss. I am aware of the interest in the Southend GCA pathway developed by Professor Dasgupta. I recently raised the issue of the pathway with NHS England and understand Sir Bruce Keogh will be writing to the noble Lord very shortly about this. As he may be aware, the Royal College of Physicians has produced a best practice guideline on the diagnosis and management of GCA, which Professor Dasgupta has helped to develop. That is good progress and provides a very good framework for disease assessment, immediate treatment and urgent referral.
(10 years, 7 months ago)
Lords ChamberMy Lords, I hope that it is acceptable for me to speak very briefly in the gap. This is an important issue, and the noble Baroness has done your Lordships’ House a great service by enabling it to be discussed. I support everything that she said about the abuse of powers of attorney—I have examples that I could add to hers.
I should also like the Government specifically to address one way in which elderly people are deprived of their property by the unscrupulous. That is when cold callers, usually on the telephone, persuade the confused elderly to buy goods and services that they simply do not need. It is difficult to detect, and even when it is detected, it can be difficult to put right. It is a serious issue which I came across regularly when I was a Member of Parliament. It is deeply distressing for the families involved and for the elderly person who has signed up to that sort of deal. It is not easy to find solutions, but I hope that the Minister can at least reassure me that the Government are looking at ways to increase protection for the elderly at risk of such exploitation.
(10 years, 11 months ago)
Grand CommitteeMy Lords, I congratulate the noble Lord, Lord Alton, on securing this debate and on his persistence in pursuing this issue. I associate myself with his remarks about Paul Goggins, who was such a good—in every sense of that word—colleague in the other place and indeed in government.
In supporting what the noble Lord, Lord Alton, has said, I want to make two simple points in the short time allocated. In doing so, I recognise the commitment of the Minister and his ministerial colleague, the noble Lord, Lord Freud, to making progress on this issue. Indeed, I congratulate the Government on the significant progress made more generally in the Mesothelioma Bill; it is a significant advance on where we were just a few years ago.
My first point is that the need to place funding for research on an adequate and sustainable basis should be incontestable, as we have heard over and again in your Lordships’ House and in the other place, and we have heard it again here today. This is a dreadful disease that inflicts terrible suffering on thousands of people and into which research is significantly underfunded in comparison with other cancers.
My second point is that the Government need to act more vigorously to ensure that funding for research is put on an adequate and sustainable basis. There is no good reason for them not to do so. If the problem remains the quality of research proposed, as the noble Earl has suggested in the past—and, as he is well aware, that is disputed, as we have heard again today—then the Government need to do whatever is necessary to raise the quality of those proposals. I suggest that the single most important action they could take is to increase the sums of money available for research. It is hard to see how that would not work.
If Ministers are tempted into further inaction by arguments about the problems of hypothecation, they should not be: those arguments are misplaced. As we heard from the noble Lord, Lord Kerr, in the debate last year, that pass was sold when funding was first accepted in universities and other research institutions from non-governmental sources. I am not aware that accepting such funding has resulted in any dilution of the quality of research.
If the problem is shortage of funds—although the noble Earl has insisted in the past that it is not—then that, too, needs to be addressed. As the noble Lord, Lord Alton, has pointed out, the Minister in the other place has said that to ask the insurance industry to pony up more funding would disrupt the exhaustively negotiated agreement which was the basis of the Mesothelioma Bill. Is that really the case? Quite apart from the continuing moral responsibility of the insurance industry as a whole—leaving aside the notable exceptions that we have already heard about—the sum of money to significantly improve the research effort on a sustainable basis is a tiny fraction of the overall amounts involved and an even tinier fraction of the sums that insurers should have paid to sufferers over the years but have evaded doing so. For example, £3 million a year would double the amount currently donated by the private and voluntary sectors. Do the Government seriously think that a levy producing £3 million a year would so distress the insurance industry, which pays out £187 million a day to its customers—more than £68 billion a year—that the industry would walk out of the agreement or think that its fundamentals were disrupted in any way?
I ask the Minister to look ahead 10 years and ask himself how it will look to historians if the Government do not find a way around all the objections, no doubt spelled out in his brief today, to making real and quick progress on this matter so that they can agree the reasonable requests that have been made in the other place, and indeed here, by all who have spoken on this issue in the past year or so. How will it look if the Government fail to engineer the relatively small sums of money needed and so condemn thousands to avoidable pain and suffering? I am afraid that the longer the Government delay in finding a solution, the harsher will be the judgment of history.
My Lords, as this is a time-limited debate, perhaps the noble Lord would accept my undertaking to write to him with those details. I am not sure, in fact, that I have them, because the letter, although extremely welcome, is quite brief in the detail it gives on the source of the funding.
I am very grateful to the noble Earl for giving way. I shall be brief. Will he write within the next three months to everyone who has spoken today reporting on the progress of the conversations with the ABI about the range of options he has just referred to?
I would be happy to do that.
Both the Government and the industry recognise the potential for insurers individually to sponsor specific research infrastructure or projects in mesothelioma, which would provide an excellent way for the industry to remain engaged following the earlier donation. I am pleased to report that the Department of Health is convening a high-level meeting with the association and the British Lung Foundation to explore practical ways to take that forward.
The noble Lord, Lord Alton, spoke powerfully about the need for sustainable funding in this area. I re-emphasise the point that I made a minute ago: research funding is available for good-quality research and what we lack are research applications. What we need, in our view, is to get innovative research ideas that will make a real difference, and that is what the NCRI meeting will hopefully do. The research ideas put forward by the noble Baroness, Lady Finlay, in her intervention are of course very pertinent. She speaks with great authority in this area. They are all questions that the NCRI discussions can address. That meeting will be an opportunity to take a strategic approach, and it requires getting the right people together. The NCRI event will involve researchers from within the mesothelioma community, and from a wider field, and research funders.
It is worth noting that spend on lung cancer research by the NCRI member organisations, including the main public funders of cancer research, has more than quadrupled over the past decade. It has increased from £3.5 million in 2002 to £14.8 million in 2012. That is because of the quality of research proposals that have come forward and the interest shown by the research community.
In conclusion, the Government are strongly committed to ensuring progress is made in research into how best to diagnose and treat this dreadful disease, and care for those affected. A number of very powerful points have been made in this debate. I will pick up those that I have not been able to cover and will write to noble Lords. I have outlined the steps that we are taking, and I hope that noble Lords are assured that these measures will deliver what they, and indeed we in the Government, are seeking.