(7 years, 9 months ago)
Commons ChamberYes; the hon. Gentleman makes a very important point. One of the unintended consequences of devolution is that we are ending up with such a mishmash of schemes, and that is of concern for the people affected.
One of my constituents, Mr M, makes exactly that point: it is unfair that the Scottish settlement is so different from the settlement for him in Stratford-on-Avon. Most importantly, one of my constituents, who is in the Public Gallery, wants to remind the House that there are fewer than 300 primary beneficiaries left, and it is vital that they are not forgotten.
Absolutely. That is a very important point. I will come on to the primary beneficiaries in a while, but I will now make some progress.
My first concern was about the different schemes that are available. The second issue, which is also important, is that we know the five existing trusts will be amalgamated into a single body to administer the scheme at some point in 2017. I am deeply troubled by the fact that the administration of the new body looks likely to be done by a profit-making private company. I know that Atos and Capita have attended meetings with Department of Health officials about the new contract. Formal tender submissions will be due soon, with a decision on the contractor set to be made in 2017. No Health Minister has had the courtesy to tell the all-party group of these plans, nor were the beneficiaries asked for their views about this in the survey done in January. Even the Department’s response to the survey, which was published in July, made absolutely no mention of such a prospect. Alongside hon. Members on both sides of the House, I cannot support proposals to contract out provision to Atos or Capita.
Let me remind the House how many in this community were infected in the first place. Many contracted HIV and hepatitis C from American blood products supplied by profit-making private companies. The United States, unlike the UK, has always allowed the commercial purchase of blood products, and those products were often donated by people who desperately needed money and were willing to be less than honest about their chances of infection. This is the reason why so many in the affected community harbour such distrust of private companies.
Since being elected to this House, every Friday at surgery I have talked to one or two constituents on this subject. In the few moments that I have, I want to share with the House what it has taught me about the impact of this extraordinary tragedy. I have lived with them through all the frustrations and all the false hope that we will finally reach a settlement.
I pay tribute to the hon. Member for Kingston upon Hull North (Diana Johnson) for the incredible work she has done in leading all of us on a cross-party basis to get the message across in respect of all those people—all those human beings, and all that human suffering. I also congratulate the Minister on her role and pay tribute to her predecessor, who worked hard, working with many of us, to try to get to a full and final settlement. I hope the Prime Minister and the Treasury are listening carefully to this debate, and that it is not beyond us to work together now to get what we have been promising our constituents—those people who, through no crime of their own, have been infected with HIV or hep C—that they will get a settlement and, as the previous Prime Minister said, nobody will be worse off.
This is a question about fairness, as the hon. Member for City of Chester (Christian Matheson) rightly emphasised. I do not think it is fair that my constituents should feel that people infected in Scotland get a better deal than they do in Stratford-on-Avon.
The difficulty for Mr M—as I will refer to him, because it is right that he maintains his privacy—is that for a very long time there has been something called the discretionary payment, which in reality is not discretionary in any way. It is something that he absolutely relies upon to make sure that at the end of the week and the month he can balance the books; he can live just well enough to be able to feel that he has regained his dignity and his freedom. The difficulty for the Minister is that there is this sum of money, but I urge the Government to look again at this matter, because it could lead to a legal challenge if people feel that they are being unfairly treated vis-à-vis Scottish settlements or other parts of our country. Some of my constituents are considering that course of action.
I want to move on to the case of Ms W, whose anonymity I am protecting because she deserves that protection. Her issue has involved the Macfarlane Trust and she is not alone in feeling that the trust is not fit for purpose. I have attempted to deal with the trust on her behalf; every step of the way it has blocked my attempts to get her case across. My message to those on the Front Bench is that it would be an outrage if the trust were to continue to deal with my constituents in any way, because it is simply not fit for purpose.
I will end my speech by mentioning Mr D, who is infected with hepatitis C, to remind colleagues of the urgency of this matter. We must not find ourselves back here again in a year’s time still looking for a settlement. Just this morning I received a call from Mr D’s wife, who works in our NHS, to tell me that he had been admitted to hospital following a severe deterioration in his liver due to the advanced hepatitis C. He might not be around by the time we come to a settlement, so I urge the Minister to remind her Government that this is about fairness and about speed of settlement.
(8 years, 4 months ago)
Westminster HallWestminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
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That £35 million includes spending from the voluntary sector. The report states that it is simply not good enough for the Government to leave decisions on such spending solely to the voluntary sector.
We welcome the decision of Cancer Research UK and Children with Cancer UK to prioritise spending on brain tumour research as a cancer of unmet need, but we are calling on the Government to identify the gaps in funding, to take action to remedy them and most important, to make it clear that they see this research as a priority. We heard evidence that creating a positive research environment with an emphasis on increasing funding would not only keep our scientists in this country, but attract scientists from elsewhere in the world. Britain has the potential to be a world leader in this sort of research but at the moment we are not.
The Government said in their reply to the petition that decisions on funding are based on a number of factors, including the size and quality of the workforce. That ignores the fact that, as the hon. Member for North West Hampshire (Kit Malthouse) said, this is a Catch-22 situation. At the moment, young trained oncologists are having to change specialties or leave this country to pursue their research. Without an increase in funding, we simply cannot attract the good PhD students and postdoctoral researchers we need to make progress and to build up the cohort of young scientists who will go on to research this disease and may make the important discoveries of the future.
There are other barriers to research. One is the difficulty of getting enough tissue to work on. Only about 30% of patients are asked whether they will donate tissue, yet polls show that up to 90% would do so if asked. We do not have enough specialist support nurses and, according to the evidence, we do not even have enough people who can transfer tissue from hospitals to laboratories.
The other problem that researchers come across—the Government really could act in this area—is that they must make applications to many local biobanks to get enough material to work on. Often, those biobanks have different procedures, application forms and so on. We urge the Government, while keeping safeguards in place, to try to tackle the problem of biobanking. Unless researchers have access to tissue, they cannot do the fundamental research that we need. The University of Southampton has started to use tissue left over from diagnosis but, again, the system is grossly underfunded. In the end, I am afraid the issue comes back to money if we want to make progress.
We also highlight other issues, such as the need for access to non-therapeutic drugs, which can improve brain surgery outcomes, and the need for access to off-patent drugs, which can be used for new indications. The Government said in response to the Off-patent Drugs Bill that they did not need a Bill to allow that. We need to make progress in that area urgently, but I will not spend too much time on it now, because we are pressed for time.
I do, however, want to say this to the Government. I said earlier that brain tumours may not be as rare as is perceived, and the reasons for that are simple. The numbers are going up. The system of recording has been changed. The experts who spoke to us said that they do not yet know the reasons for that. Secondary tumours are not recorded, yet they still have to be treated, and benign tumours are not recorded, but they can still kill. It is that, and the huge burden of the disease, that we think the Minister ought to take into account, or at least ought to get his Department to take into account, to deal with this issue. The five-year survival rate for brain tumours is only 19.8%. When it comes to cancer as a whole, 50% survive for 10 years or more. That is the difference, because of lack of funding and lack of research.
I hope that the Minister will look at the personal stories in our report. They are there for a reason. Let me remind people of some of them: Saira Ahmed, dead at the age of 6, Abbie Walker, also dead at 6, Lucy Goulding, who died at 16, and Stephen Realf, whose sister started the petition. An RAF officer who was apparently in excellent health, he was diagnosed at 19 and dead at 26. There are many more, whom I do not have time to name. There are those who died and those who survived—remarkable people such as Hannah Jones, a young woman who gave evidence to us and now devotes her time to promoting the HeadSmart campaign. And there are the families of those who died. In all my time in Parliament, I have never met such an amazing group of people. They had undergone the most appalling tragedies, but did not want to point the finger of blame. They simply wanted to use their experience to make life better for others. They deserve that we listen to what they say.
I say gently to the Minister that it is not often in ministerial life that one gets a chance to make a real difference. We know that Ministers get bogged down in the minutiae of every day and that things come down the chain to them, but this is a chance to make a difference. It is a chance to leave a mark that will be there long after he leaves ministerial office—not that I am hoping he will leave soon—long after most of us have left Parliament, in fact.
I am going to wind up my speech, if the hon. Gentleman will forgive me.
This is a real chance to save lives, so I say to the Minister: read the report and champion its recommendations in government. That way we can have world-class scientists in this country and save the lives of many people, including young people, who will have the chance to make an enormous contribution to this country. It is as simple as that. This cancer has been neglected for far too long. That now has to change. [Applause.]
It is a pleasure to serve under your chairmanship, Sir Edward. As a member of the Petitions Committee, it is a pleasure to be called to speak in this debate. I add my thanks to those who put together the petition, particularly Maria Lester and the Realf family—their love and passion for their son and brother came across in all our evidence sessions—and to all the others who came along and gave evidence. Hopefully this will be their report.
I declare that I am the chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Given the vast number of factors that cause brain tumours, I join colleagues in using this opportunity to call on the Government to do more to redistribute research funding more fairly among different cancer groups. There are limited resources available.
I commend the hon. Member for Warrington North (Helen Jones) on securing this important debate. The UK model of partnership between Government, industry, universities, the NHS and charities is the right leadership model. The Government have led the way with a taskforce on anti-microbial resistance; maybe the way forward here is a taskforce on how to deal with early diagnosis and extra funding, as well as bids from charities that would attract that funding.
I agree that the Government have been leading the way. No doubt we will hear from the Minister about some of the work that they have been doing to create such partnership models. I pay tribute to the work that my hon. Friend has been delivering in that area.
Limited resources are available to fund research. A vast number of conditions fight desperately for every resource available, and researchers in every field work hard to get one step closer to a cure. It is important that we take a moment to thank all our constituents who are working tirelessly to advance medicine, find cures and improve the life chances of all of us.
(8 years, 4 months ago)
Commons ChamberIt is a privilege and an honour to follow the hon. Member for Kingston upon Hull North (Diana Johnson). I commend her for her leadership in bringing Parliament together on this very important subject.
Thank you, Madam Deputy Speaker, for allowing me to speak in this important debate on such a sombre and saddening topic. I speak as the representative of a number of individuals in my constituency whose lives and the lives of those they love have been grievously, unfairly and irreversibly affected by the terrible injustice we address this afternoon.
The Prime Minister, on behalf of the Government, has apologised for the infection of individuals with contaminated blood—an apology that is now more than a year old, for a scandal that is more than 20 years old. When he rightly addressed the matter last year, my right hon. Friend said that it was
“difficult to imagine the feelings of unfairness”—[Official Report, 25 March 2015; Vol. 594, c. 1423.]
that those who have been affected must feel. My constituents and others around the country were let down, when they or their family members were at their most vulnerable, by the health service that was supposed to keep them safe. It truly is difficult to imagine.
I am sorry to say that the feelings of unfairness have not been lessened by the proposals in this consultation; if anything, they have been made worse. Lives have been changed and lives have been taken. So much has been lost, but the Government must now focus on lessening and mitigating this loss as much as can ever be possible.
On mitigating the loss, I am here to represent several constituents, but one in particular—Andy Gunn. He is extremely concerned by the Health Secretary’s suggestion that the funding might come from the NHS budget. Does the hon. Gentleman agree that that would be highly inappropriate?
I have had similar representations from my constituents, and I hope that those on the Treasury Bench take on board the comments of Andy Gunn and of others in my constituency.
The vastness of the loss we are addressing today is such that even the ideal solution cannot do much to address it, but what has been proposed does so much less. The proposals contained in the consultation are far from what the victims of this injustice expected or were led to believe they would receive. I know that many of my colleagues have similar stories to tell. I have had constituents visit my surgeries who have always been so incredibly strong about what has happened to them and hopeful for the potential of a good settlement from the Government, but have now been left in tears. They feel let down and fear that these proposals will make life even harder for them.
Those are people whose lives have turned out to be radically different from what they had planned, through absolutely no fault of their own. They struggle to get insurance or pensions—things we take for granted in this place—and have had their careers curtailed. Even worse, they have been unable to have children, or have seen loved ones die tragically soon. These people should be helped and need to be provided with a full and final settlement that allows them to move on, without being worse off.
There remains much misunderstanding about the medical conditions of the victims and the treatments available. The improvements in care for those with HIV/AIDS have been a blessing for many. However, the disease remains incurable, and haemophiliacs and those with other conditions such as hepatitis C cannot take the medication that could help them. We must also properly consider those infected by more than one disease. Those with both HIV and HCV have a threefold greater risk of progression to cirrhosis or decompensated liver disease than those infected only with HCV. We should not misunderstand, underestimate or underplay the dangers of these diseases.
My constituents, and the constituents of so many of us here today, have suffered a grave injustice. It is an injustice that they never expected to suffer, would never have been able to prepare for, and for which the blame rests entirely elsewhere. They or their loved ones have experienced terrible illness and their lives have been changed or ended. “Unfairness” does not seem strong enough to describe it, but that word is the best we can do.
The Prime Minister was right to apologise, but this consultation does not go far enough. When my constituents only have to look north of the border to see a better deal on the table, with talk about public monuments to those sadly lost, and are then faced with an option here that could leave them in an even worse position, anger and resentment are more than understandable.
Does the hon. Gentleman agree that there is a danger that the consultation will undo the good of the apology? The impact assessment states that the intention of the policy is to safeguard the interests of those who are chronically infected and receive an annual payment, but that annual payment is no longer index-linked, and people have made their assumptions on that basis. My constituent, Norah Tracey, has had to take early retirement because she has hepatitis C, and she based her projections on those financial assumptions. If it is no longer index linked, we are making a mockery of what the impact assessment says and we are undoing the sincerity of the apology.
I thank the hon. Gentleman for that intervention. I have heard similar representations from my constituents. Indeed, the all-party group found that the representations were very similar across the board. I sincerely hope that those on the Government Front Bench are listening to these interventions today.
The Prime Minister said last year:
“As a wealthy and successful country we should be helping these people more. We will help them more”—[Official Report, 11 March 2015; Vol. 594, C. 289.]
I agree with him and support those words entirely. I hope that the Minister and the Department of Health will ensure that the settlement for the victims will meet the intentions of what the Prime Minister said last year.
(8 years, 8 months ago)
Commons ChamberUrgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.
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I slightly regret the right hon. Gentleman’s tone, and I am totally mystified by his point about the meeting. A meeting was organised with the all-party group and his colleague the hon. Member for Kingston upon Hull North. I think the meeting might have been moved once, at the request of the all-party group, but the details and arrangements for the meeting with me were circulated by that group, and six right. hon. and hon. Members attended the meeting. I am sorry if there was some confusion, but I do not think it was on the part of me or my officials. A number of colleagues came to the meeting. We had a very useful discussion and I have sought to update others since.
The right hon. Gentleman is right that we need to move towards a conclusion, but it is also a matter of record that he was, at times, a member of the last Labour Government, who, for 13 years, did not move forward on this matter.
The Minister will be aware of my frustration in dealing, on behalf of a constituent, with the Macfarlane Trust, which she knows, from the weight of evidence in the consultation, is not fit for purpose. Will she confirm that any full and final settlement will not be administered by that trust?
I am well aware of the shortcomings of some of the schemes identified by colleagues and those affected by this tragedy, and I have obviously read the details from the all-party group and other Members’ communications. I have confirmed before that reducing the number of schemes will be part of the consultation on reforming the schemes, so my hon. Friend’s point is well made. For the record, though, I should add that I had a meeting recently with the staff of the schemes—the people who man the phones and deal on a day-to-day, week-to-week basis with sufferers—and I am clear that they, as distinct from the people who head up the trusts, are working hard to offer a service to people in difficult circumstances.