I beg to move,
That this House
recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of the NHS, which devastated thousands of lives;
notes that for those affected this tragedy continues to have a profound effect on their lives which has rarely been properly recognised;
welcomes the Government’s decision to conduct a consultation to reform support arrangements and to commit extra resources to support those affected;
further notes, however, that the current Government proposals will leave some people worse off and continue the situation where some of those affected receive no ongoing support;
and calls on the Government to take note of all the responses to the consultation and to heed the recommendations of the All Party Parliamentary Group on Haemophilia and Contaminated Blood’s Inquiry into the current support arrangements so as to ensure that no-one is worse off, left destitute or applying for individual payments as a result of the proposed changes and that everyone affected by the tragedy, including widows and dependents, receives support commensurate with the decades of suffering and loss of amenity they have experienced.
I thank the Backbench Business Committee for granting time for this debate today. This same topic was the subject of the first debate that the Committee scheduled after its establishment in 2010; it is sad that, six years on, we are still fighting for justice for those affected by the contaminated blood scandal. Also in 2010, during the general election campaign, my constituent Glenn Wilkinson came to see me with his wife Alison. They told me about Glenn’s having been given infected blood during dental treatment at Hull Royal Infirmary and how it had affected his life, his health and his opportunities for work and how it had impacted on his family. From then on, I began to find out about the biggest treatment disaster in the history of the NHS.
Last year, my constituent Eddie Quigley came to see me in my office. Sadly, he has since passed away. On behalf of his son James and his widow Sally, I sincerely thank the hon. Lady for her persistence in bringing forward this debate and in ensuring that the issue is properly discussed.
I am grateful to the hon. Gentleman for those comments. I have received many emails and letters from affected families from all over the country. Sadly, I cannot refer to them all today. I want to set the scene and comment on the Government’s proposals, and I will try to be brief to allow time for the many other hon. Members who want to contribute and talk about their constituents’ views on the consultation.
Governments of both colours have introduced a patchwork of schemes and assistance over the years, but there has never been a complete package of support for those affected. That is in marked contrast to the response to other medical and treatment disasters, such as thalidomide, where full support and compensation has been put in place. I am sure that the whole House wants to pay tribute to all those who have fought for justice over many years and to the families and loved ones who supported them.
My hon. Friend mentioned the various schemes that have been put in place, but does she agree that the process of applying and getting through those is very difficult, particularly for people who are so ill?
I will make a little progress and then take an intervention. I was paying tribute to all those who fought for many years. I think we would all agree that they have been fighting for too many years to get a just settlement for what happened to them. Let us be frank: they are weary from fighting. They want to resolve this once and for all, and to get on with their lives. Sadly, more and more people are dying without seeing that justice. Each individual affected has been robbed of many of the opportunities we all take for granted—the opportunities to work, to have a career, to buy a home and to grow old with the person they love. Family members have had to care for their loved ones, perhaps giving up careers to do so, and watch their health deteriorate.
My hon. Friend has been tenacious in her pursuit of this issue, which has been going on for many years. Like her, I have constituents who have been affected by it, and it is about time this was brought to an end and action was actually taken. She mentioned thalidomide, but that took many years to address and it took a determined Minister to introduce the scheme. If he did that, I cannot see why this Minister cannot do the same.
I am grateful for my hon. Friend’s comments. It is important to recognise that in this case there has never been an admission of liability from the Department of Health or the NHS in respect of what happened to these individuals; they have always taken the view that nobody could have known at the time about the problem with the infected blood. I want to make the point that this is not a court of law; this is Parliament, and we are being asked to deal with a clear wrong that has been done to our constituents. We know that these people were damaged and harmed by the treatment they received from the NHS—by the state. What we need to do now is put together a proper support package to ensure that those affected and their families are at the heart of what we do and whatever scheme is proposed.
I apologise for having to leave very shortly, but I commend the hon. Lady on her sterling work on this cause. In the case of my constituent Mr Tony Farrugia and his brothers, who are campaigning here today, the situation is exactly as she describes; it is about the complexity of all the schemes. Because his father died in 1986, before the trust was set up, his mother never received any money at all, and that remains the case today under what is being proposed. That seems very unfair to me.
I am grateful to the hon. Lady for giving way, particularly as she has made such great inroads on this subject; I commend her for that. Does she agree that it is completely unacceptable, particularly in the context she has set out, that any reform the Government introduce should make sick people even worse off? That seems to be the height of injustice. One of my constituents will lose £500 a month, and another, Graham Manning, is in the Gallery today. They need to see that justice is being done. That has to be a bottom line.
I agree entirely. Let me return to the point I was making about liability and the need now to put in place a proper support package, recognising the wrong that has been done. For far too long, the Department of Health has not done that. It appears to me that it has been far more interested in protecting the institutional reputation of the Department and of the NHS than in looking to right a wrong.
In the last Parliament, a concerted effort, from all parties, was made to seek a lasting settlement for all our constituents. The all-party group on haemophilia and contaminated blood led the way in producing a report showing that the current financial arrangements were not fit for purpose, were ad hoc and were overly bureaucratic. Alistair Burt worked alongside the all-party group, with the Prime Minister’s office, to finally get an apology made in Parliament and an agreement that the Government would consult on a proper support package for all those affected. The Prime Minister’s apology a year ago and the announcement that £25 million would be made available for transitional support was very welcome. So, too, was the promise that there would be a full consultation on a comprehensive support package. I must say to the Minister that not one penny of that badly needed £25 million has been spent yet, and that the consultation on the new support scheme was announced only on
Like many Members, I have a constituent here today. Sue Sparks has been visiting the Palace and is now in the Public Gallery. Is it not the case that the consultation does not seem to chime with the apology? What is on offer in no way seems to reflect what I am sure the Prime Minister meant as a sincere apology.
My hon. Friend makes an important point. We are now a few days away from the end of the consultation period. I understand that the Minister was advised—wrongly, I think—by her officials that she could not meet with the all-party group during the consultation period. I know that that was not the case in Scotland: the Minister there met MSPs and individuals. We called for this debate so that the Minister could listen to the comments of her fellow parliamentarians about the Government’s proposals and then feed them into the consultation.
I have many constituents in Taunton Deane whose lives are blighted by this issue of contaminated blood. Although I applaud the Government for bringing forward this consultation, there are many who believe that it is only adding fuel to the fire. In fact, it could be making the situation worse and causing more pain, not least because, in Scotland, people may get a better deal than those in England. I urge the Minister to look very carefully at the consultation so as not to penalise people who are already badly suffering.
I wish to move on now to highlight a few of the problems with the consultation. First, as has already been said, many of the existing recipients will receive lower payments under the new scheme. The Government’s proposals would end all discretionary support, such as winter fuel allowance, child supplements and low income top-ups, which means that many people will lose out, potentially by thousands of pounds a year.
Secondly, most of the current beneficiaries have hepatitis C stage 1 and currently get no ongoing support. They are left begging for individual payments from the Caxton Fund. The Government proposals will provide annual payments for people in stage 1, which is welcome, but those people will be subject to regular individual assessments. That could result in fluctuating payments and reduced financial certainty for individuals. Assessments will also take only clinical factors into account. They will not look at the loss of education or employment, and decades of loss of amenity, ill health and loss of earnings. According to the information from the Government, those assessments will cost £500,000 a year to carry out. Would that money not be better spent on providing financial support to those people?
I congratulate the hon. Lady on her determination and her decision to champion this issue. She highlighted the decades of ill health from which many suffer. There is also the emotional stress and trauma. Does she agree that the consultation process itself has added to that burden for some of those people? That is certainly the message that I have received loud and clear from my constituent, Mike Webster, who came to see me on this issue.
The hon. Lady makes a valid point. I will proceed with my concerns with the consultation, because I would like other Members to speak in the debate.
My third point is about the inadequate provision for the “affected” community—the widows, the partners and the dependants of those infected. The proposals for widows appear to be extremely complex. They create six categories of widows, with big variations in what is offered within each category. Department of Health officials could not explain how they would work when they met the APPG’s secretariat and have not provided an explanation of these proposals as promised. There also appears to be nothing here for dependent children.
I have constituents who have been infected. I have also heard from infected partners who, because of the failure of the scheme, cannot get insurance for themselves. Those who have young children are worried about the long-term implications. Does my hon. Friend not think that the proposal adds extra stress to what is already a very stressful situation?
My right hon. Friend makes an important point.
Fourthly, there are concerns that under the plans money will be used to pay for new drugs to treat hepatitis C, which will be bought separately from the NHS budget, so will cost more. Under guidelines from the National Institute for Health and Care Excellence, everyone with hepatitis C should be eligible for treatment with a new generation of drugs from the end of February 2016, so when funds are allocated for treatment, that means once again that money does not go directly to those who need financial support.
Does my hon. Friend, who is making an excellent speech, agree with my constituent, who is affected and feels that the changes are deliberately punitive and exceedingly cruel, as they use requests for changes to support schemes to affect people in that way? My constituent has had to use the ex gratia payment from the Government to fund treatment refused by the NHS, as many other people have had to do. His annual payment will decrease over time and he will lose the additional support that is currently provided. People such as my constituent are hit again and again, so how can the consultation on reform go ahead on that basis?
I shall move on and complete my speech.
Fifthly, there is concern about the fact that beneficiaries in England will be worse off than beneficiaries in Scotland. The Scottish proposals are far more generous to hepatitis C stage 2 and HIV sufferers, who will receive £27,000 per annum or £37,000 if they are co-infected, which is welcome, but are much less generous for hepatitis C stage 1s, who will receive an additional lump sum payment but no ongoing support. The Scottish proposals have been broadly welcomed, partly because of the way in which the consultation was conducted in Scotland, and the clear acknowledgement, for example, that the existing trust structure will be scrapped.
I am conscious of time, and I am about to reach my allocated 15 minutes, so if hon. Members do not mind I will complete my speech.
Following the scrapping of the trust structure in the Scottish model, may I seek reassurance from the Minister that she will scrap trust structures in England, Wales and Northern Ireland, which have been subject to much criticism? There is no mention in the consultation of any proposals on lump sum payments, which would enable those affected to make real choices about their own lives, such as paying off a mortgage, clearing debts or helping their children. I reiterate my belief that the £230 million the Government are set to receive over the next few years from the sale of Plasma Resources UK should be earmarked for lump sum payments for those people. This is money from the work by the Department of Health to create blood products, and it would be fitting to use it in that way.
I am disappointed that there is no mention in the Government proposals of allowing those who have been affected to be passported automatically through to the new benefits that have been introduced—for example, moving from the disability living allowance to the personal independence payment. There is no consideration at all of an Irish-style medical card to ensure that access to healthcare is as speedy as possible.
In conclusion, we have had a chance to consider the detail of the Government’s proposals. I am disappointed, as they do not deliver what we all want: giving people dignity and allowing them to get on with their lives, rather than constantly having to battle to get support. That means they have to campaign to ensure that their lives do not become even worse, let alone see improvements. They need and deserve action in a timely manner. They do not want to end their lives as campaigners. Many of those who are infected have told me that they believe that the Government are just delaying a proper settlement as more and more people die. After their long and bitter experience who can blame them?
That is the point I was going to make. I should like to thank the hon. Lady for co-chairing the APPG on haemophilia and contaminated blood with me, and with many others in the last Parliament. Does she agree that the Minister should accept that we have a framework with the settlement in Scotland, which needs tweaking, and the comprehensive APPG report, which looks at the fact that trusts and funds did not operate to support the victims? If we heed experiences in Scotland and our report, we can begin to help the victims.
I thank the hon. Gentleman, who speaks with wisdom on this matter.
It is now time for the biggest treatment disaster in the history of the NHS to be settled once and for all. I hope the Minister will look again at the proposals in her consultation and think about what is in the best interests of the group in question, who have been so badly treated for so many years.
It is a privilege and an honour to follow 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.
Order. I hope that we can get through this debate without a formal time limit on speeches. The debate is not contentious, on one side of the House or the other, so I trust that Members will be courteous to each other by keeping their speeches to around seven minutes. That will allow everyone who has indicated that they wish to contribute to do so.
I will do my very best to keep my speech within seven minutes, Madam Deputy Speaker.
I pay tribute to my hon. Friend Diana Johnson and the all-party group for securing the debate, and to the Backbench Business Committee for granting it. I also pay tribute to those members of the campaign who have travelled to be in the Gallery today. I know that many were unable to stay because of the important urgent debate on steel, but many have stayed and I thank them for their patience.
I am speaking today on behalf of my constituents the Smith family and Lin Ashcroft. Janet and Colin Smith lost their son Colin in 1990, when he was just seven. Just a few months earlier, Lin lost her husband Bill Dumbellton. I have spoken about Colin before in these debates, which many hon. Members have called to consider what has been described as the greatest treatment disaster in the NHS.
Colin went to hospital when he was eight months old for a minor ear infection. As a haemophiliac, he received factor VIII, which, following a freedom of information request, the family later learned had come from a batch from an Arkansas prison. He spent his short life fighting illness and died aged seven of AIDS and hepatitis C, although the family did not find out that it was hepatitis C until three years after his death. No parent should have to go through what the Smiths have gone through. As they have said, they want justice so that their son can rest in peace and they want justice for those who remain.
That story is just one of the many we have heard from constituents. I heard from a constituent, David, who similarly spoke passionately about his circumstances. He will not even be affected by the consultation that is going on. Clearly, this is a UK legacy issue and a UK historical injustice. We have heard about the difference in Scotland and elsewhere. Does my hon. Friend agree that we need to make sure the UK Government lead on working with the devolved Administrations—in Wales, that means the Wales Office—to ensure that we do not end up with a postcode lottery, with some people potentially in worse situations and some not getting the same justice as others?
My hon. Friend makes an incredibly valuable point, which I hope the Minister will listen to—I know it will be heard by the large contingent of Welsh campaigners who have come here today to listen to the debate.
Bill, the husband of another constituent, Lin Ashcroft, was one of the first haemophiliacs to treat himself at home with cryoprecipitate. He contracted HIV and hepatitis C from blood, and he lost his job with BT in the 1980s, after telling the occupational health department about his HIV status. Bill had no life cover, as no one would insure “people like him”, as it was put at the time. Following his death, Lin had to grieve and cope with the financial commitment she was left with. She eventually received some support from the Skipton Fund, but she found the process involved absolutely brutal—she felt she was jumping through hoops to get the money.
We have to keep telling these stories, because we have to remember what many people went through. We have to remember that they need a proper settlement because that can help to draw a line under this period, in so far as we ever can. These people have lost their loved ones, and they have lost great friends they have made during the campaign. As they have told me, it just becomes too difficult in the end to attend the constant funerals, as members of the community pass away. These people want proper support for those who are still with us.
The Prime Minister’s apology gave my constituent Sandra Molyneaux hope that the wrong done to her and her family would finally be righted. Does my hon. Friend agree, though, that subsequent developments fly in the face of that? Sandra and thousands of others are telling the Government through us today, “Don’t tell us you’re sorry. Show us you’re sorry.”
My hon. Friend makes a fantastic point [Interruption.] And it is very well received. He anticipates the point I am coming to.
There was some hope last year when the Prime Minister made the much-needed apology for the contaminated blood disaster. He promised then to improve the financial support for the victims and their families. As he said, we are a “wealthy and successful country” and we should be helping these people more. There was some hope, and the consultation was launched into what the support should look like.
A year on, however, the victims have been let down again. Despite the headline announcement about the additional budget of up to £125 million in support, not a penny has been spent, as has been said. The majority of people currently receiving financial support will be worse off under the new scheme. Removing discretionary payments may mean that many lose to the tune of thousands of pounds a year. They will be significantly worse off than those affected in Scotland. Individual assessment could reduce financial security. Widows, partners and dependent children who have been bereaved will receive limited or no support. Lastly, the proposed reforms would just not deliver the sustainability and security the affected community so desperately needs. This is not the package that is needed. It is also not clear whether payments under the new proposals will be exempt from tax and benefit assessment.
What has been proposed is very different from what will be offered by the Scottish Government. For widows who have lost their loved ones, the difference is not just stark—the proposals are poles apart. I will leave it to SNP Members to elaborate on that, but the difference is very pointed.
Does the hon. Lady not accept that this is one occasion when there should be close working across the Administrations? I offer her the example of a constituent who was infected 35 years ago in Staffordshire. Although he has lived in Scotland for all that time, he will get compensation under the scheme devised by the Department of Health in England. Where is the sense in that?
I thank the right hon. Gentleman for his intervention. He is absolutely right and I am sure he will get the chance to elaborate on that point later. For parents and families who have gone through the trauma of losing a child like Colin, there is nothing at all.
Nigel Mills is here from Wales today and he is now receiving a new treatment for hep C. He has been able to access that treatment, although, mercifully, his condition has not resulted in cirrhosis of the liver. All those in Wales who developed hep C and could benefit from those new drugs are now receiving them. The Haemophilia Society is very anxious that all those in England who could benefit should have access to them and that funding for new treatment should not be diverted to cover existing treatments.
How many times do we keep having to tell these very personal stories, and how many times do we keep having to call these debates and table questions? How many times do victims have to come to London to lobby MPs? The Haemophilia Society has responded fully, highlighting the weaknesses in what is being proposed and saying that the consultation should be withdrawn.
I ask the Minister please to reflect deeply on this, because what is proposed does not meet the needs of widows, partners, parents, children and those affected. But she should not reflect on it for too long: this has been an ongoing nightmare since the 1970s for thousands of families. The Government cannot bring back the dead or restore health, but they can award a package that will ensure that survivors and families are secure. The apology was a step forward, but let us not prolong the agony further for those who have suffered for far too long. Please listen to this campaign and give the campaigners what they deserve. Please right the wrong.
I welcome the Backbench Business Committee’s selection of this important topic, and I congratulate my hon. Friend Chloe Smith and the hon. Members for Kingston upon Hull North (Diana Johnson) and for South Down (Ms Ritchie) on their efforts in securing this valuable debate.
I want to acknowledge the tremendous campaigning work of the all-party parliamentary group on haemophilia and contaminated blood. Its efforts have helped to pave the way for the current Department of Health consultation to secure a lasting financial and support settlement for those thousands of people infected with HIV and hepatitis C through contaminated blood in the 1970s and early 1980s.
Let me say at the outset that my heart goes out to those people who have been affected by the contaminated blood scandal, both in my constituency of South East Cornwall and across the country. The devastating impact on patients and their families and friends is immeasurable and lasts for a lifetime. We must all do what we can to ensure that those affected have as secure a future as possible.
I have personal experience of trying to help one constituent who has sadly been impacted by this terrible tragedy. My constituent was infected with contaminated blood in 1985 at the age of 35 and subsequently contracted full blown hepatitis C, which has now developed into cirrhosis of the liver.
My constituent, who understandably has asked not to be identified, has undergone three courses of arduous interferon-based treatment. The last course caused a life-threatening infection that required a month in hospital and some invasive surgery and extensive abdominal surgery.
Now aged 65, my constituent suffers from severe fatigue, physical weakness, brain fog, which means that she is unable to read anything vaguely complicated, constant itching, fever, sweats, depression and total and permanent hair loss. The stress of living with those conditions on a daily basis for 30 years must be immeasurable. The Government must do all they can to support patients and their families.
My constituent wanted me to highlight her case as an example of where anomalies in support for patients suffering from cirrhosis of the liver have led to financial hardship and additional worry at a very distressing time. She was very grateful for the lump sum she received and an income of £14,760 per annum. However, that figure would be £26,000 in Scotland, nearly double the sum offered in England. That is iniquitous.
A constituent of mine—Janis Richards of Sudbury—has written to me, and hers is a very tragic case similar to that highlighted by my hon. Friend. I am struggling to explain to her why there are such different arrangements for constituents across the United Kingdom, given that this problem originally arose under a UK Government.
I completely concur with my hon. Friend. My constituent is particularly concerned about proposals to withdraw index linking from annual income and to refuse to increase it by any meaningful amount. I understand that there is a recommendation to fix annual payments at a flat rate of £15,000 a year, which would leave my constituent with a nominal financial increase of about £240. There are also proposals to withdraw back-up services for emergencies and to withdraw support, which my constituent will certainly require, given the severity of her condition.
May I ask my hon. Friend the Minister to clarify the position, and to take my constituent’s concerns into account when formulating final proposals? My constituent previously enjoyed a successful career in the legal profession, but she became too ill to pursue it after her infection with contaminated blood. Her career was, sadly, cut short, as was her considerable earning potential and professional development.
Patients must be treated with fairness, and each case must be assessed and supported on its merits. I am grateful that the Prime Minister acknowledged the scale of the tragedy and apologised on behalf of the UK Government. I welcome the additional funding for England that was announced in 2015 to ease the transition to a reformed scheme and ensure its sustainable operation with patients at its core. That scheme must provide a robust and fair system that supports and compensates those who are affected and removes any unnecessary complexity and unfairness.
At the start of her speech, the hon. Lady mentioned the excellent work of the APPG. It is right to highlight that, because it has shed a lot of light on the issue. In every constituency, there are heart-breaking stories like that of her constituent. I have two constituents who, through no fault of their own, received contaminated blood products, and one of them feels as though he has a death sentence hanging over his head. Does the hon. Lady agree that we should not, quite literally, add insult to injury, and that a just and fair settlement must be found as soon as possible? I know that the Conservative Government were not necessarily responsible for the blood products, but it is in the gift of this Government to sort the matter out once and for all.
I sincerely hope that the Minister is listening to what the hon. Gentleman has to say, and that she and the Government will take action to make it easier for affected people to live as good a life as they can expect to.
There are currently five different organisations funded by the Department of Health to which affected individuals can apply for support. It is encouraging that staff in those schemes have said that the system would be more efficient and consistent if the organisations were combined. Other concerns that have been raised should be addressed through the consultation and subsequent proposals. Those concerns include the fact that beneficiaries are not individually assessed, and that bodies operate different payment policies. The APPG is quite correct to state that the system is not fit for purpose. The consultation that the Department of Health is conducting, which concludes this week, is a helpful step. I am pleased that the Department of Health has reached out to, and sought views from, affected patients and their beneficiaries, and I congratulate the Minister on that. The outcome must lead to a fair and sustainable solution for my constituent and for impacted individuals and families across the country.
I want to express my admiration for my hon. Friend Diana Johnson and the sterling work that she has done in raising the matter. I know from personal experience that she is a formidable campaigner on this issue.
An MP has no greater responsibility than to give a voice to those who feel as though they are not being heard, and I want to use this opportunity to tell the story of my constituent Alex Smith of Chadderton. Quite a lot of the debate has been about finance, and that is important. It is evident from the consultation and from the Government that the driver from their point of view is to squeeze this for every penny they can. However, I want to talk about the real human cost—the everyday cost for those affected.
Alex is ill. He struggles to get out and about. He often feels worn out and unable to live the fulfilling life that we take for granted. Despite his physical difficulties, he is to many, including me, an inspiring man. He has shown great strength of character, resilience and a pride that is the culture of many in our town. His story is not just heart-breaking, but unjust. In a fair society, those who are wronged should have fairness and the wrong should be put right.
Alex and his wife Brenda celebrated the arrival of their son in 1980. To put on record how long the family has waited for real justice, let me say that during that period—from the blood contamination to getting answers, getting proper compensation and, now, fighting for enough money just to pay the bills—I was born in a hospital down the road, went to nursery, went to primary school, went to secondary school, went to college, went out to work and had two sons of my own, of whom the eldest will leave school in two years’ time. In the period that Alex has had to wait for justice, I have lived my life, and I have done so without many of the difficulties that Alex has had. That justice is no justice whatsoever.
A year after her son’s birth in 1980, Brenda was diagnosed with cervical cancer. She received treatment for that, including a blood transfusion. Separately, Alex, being a good citizen, gave blood in 1995, like hundreds and thousands of others. From the sample test, it was discovered that he had hepatitis C. To be honest, he did not really know what it was. He was told that, with treatment, it might well clear up. He went for treatment, and received most of it, but it was stopped early for other reasons. He thought that that was it.
Over the course of three years, Alex noticed he was becoming forgetful. He put that down to getting older and having a few senior moments, but it got worse and he became increasingly worn out, tired and lethargic. He struggled, but he had the support of his wife and family by his side. To fast-forward 10 years, the family had another tragedy when his wife Brenda passed away. The coroner ruled that the case was inconclusive and the cause of the death was recorded as “unascertained”. We can imagine the grief the family went through, and throughout this time Alex continued to struggle, each and every day, with things we might take for granted.
In 2011, Alex visited his doctor again and underwent a routine blood test. He discovered that the hepatitis C had not gone away and was still there. He went through further treatment, but instead of making him feel better, it made him feel much worse. At that point, he was determined not just to get treatment, but to get answers. His quest started at the hospital where he felt it all began. The records had been destroyed, so he realised that if he was to get real justice and to get answers, he would have to track down the people who were there at the time.
Alex’s mission led him to Bangor in north Wales, where the retired surgeon living there confirmed that Alex had had a blood transfusion with what was likely to be contaminated blood. That made him think, “If I received contaminated blood, could it be that Brenda, who received treatment in the same hospital, also received contaminated blood and may have had hepatitis C as well?” He went to the hospital to find the records, and the records said that Brenda had had hepatitis C. Cruelly and inexplicably, the hospital had not told Brenda and Alex that. It was only when he went back through the medical records years later that that was discovered.
Alex applied to the Skipton Fund and received compensation for himself and his wife, as a surviving stage 1 widower, but that did not make him feel any better physically. He describes every day—let us just imagine this—as waking up with aching flu. Imagine waking up every day, seven days a week, 365 days a year, with the flu and no end in sight. How would that drag us down and make daily life feel?
Alex and Brenda did not ask to be infected. Alex did not ask to spend his life in pain and poverty, or to be made to feel, during this consultation, as though he is begging for something that he is not entitled to. His life has been taken away. He wants justice, fairness and closure. He wants to be able to stop the campaign that has been necessary to get justice, and to live a decent lifestyle.
The hon. Gentleman is making a very serious and sympathetic case. As well as people’s suffering, is there not also the issue of their unrealised potential—the hopes dashed, the dreams never lived, the potential never reached? It is on that account that we really owe it to these people to speak up—I do so on behalf an unidentified constituent who does not want me to give his name—and urge the Minister to address the issue.
The hon. Lady makes an absolutely excellent point. When Alex came to my office in Oldham, he told me that with his compensation payment he had bought a van to go and work self-employed, but his illness stopped him and eventually he had to sell the van, which had ended up sitting on his driveway. The hon. Lady is absolutely right that people have been denied opportunities that many in this House would take for granted. It is far more than simply an aching pain, or not knowing whether tomorrow will be better than today; opportunities have been stolen from people. Given that it is the state’s responsibility to put this matter right, we owe it as a nation to do so once and for all.
The payments we are talking about will seem quite small to many people here. In some ways, that is what makes this so unfair and so cruel. In one of the richest nations in the world, we are talking about penny-pinching from the poorest people in society, who did not choose to be in this situation and who need a way forward. A £2,000 payment taken away, or a winter fuel allowance, or prescription payments—support is being taken away. It is important to say that the £2,000 payments do not go to everyone, but are for people whose income is 70% below the average in that area. I do not want to make party political points, but it is a bit difficult not to do so when the Government of the day could put the matter right but are choosing instead to drag it out and prolong the agony and pain.
When Members vote in the Lobby of this House, we will be voting after having received a pay rise this year. Well done, all of us—aren’t we fantastic? Well, the people out there are not asking for a pay rise. They are asking just to get by—to have the money to pay the bills—and for justice. The Minister has the opportunity to put the matter right once and for all. She should take it.
I am very glad to be able to take part in this debate, having secured it along with hon. Members from both sides of the House. It is on an important and sombre topic.
Back in 2015, I spoke in this House on behalf of two constituents. One is, I believe, in London today. One has passed away—Annie Walker of Norwich. She was one of thousands of people nationwide given infected blood by the NHS during those decades. It left her fighting illness throughout her adult life—she contracted hepatitis C from an otherwise routine blood transfusion at the age of just 19. That caused cirrhosis of her liver and led to cancer in later years. Despite a liver transplant in the months since I last spoke for her in the House, she was told that the cancer had spread and was given just months to live. Like many others, throughout her illness she campaigned to increase hep C awareness and for better treatment of those affected by the scandal. The first thing I want to do is to pay tribute to her courage and tirelessness in campaigning for others while she was suffering so badly herself.
I will add just a few points to the arguments that have already been raised, urging the Minister to do everything she can to put right this historical wrong. I urge her to look again at indexing. It is important to maintain the value of the payments made to those who are suffering. I also urge her to stick to her guns and make future payments simpler and more dignified, rather than people having to go cap in hand to a motley collection of charitable funds.
I urge the Minister to stick to what she laid out in this House, when she established her aim to get annual payments to those who had not, to date, received them. There are those who have not yet been included in the funds and they currently receive no regular support. It is good to seek to include some of those people in the scheme. Her other aim—not to remove payment from any person—is equally crucial. She has set out her aims to the House and we will all hold her to them. Like other Members, I welcome the doubling of the funding available through the NHS. I also welcome the action the Minister has laid out in relation to treatment, something I have argued for a number of times.
A third constituent came to see me after we last held a debate on this matter. He suffers from severe cirrhosis of the liver and needs the new generation of drugs. We should make those drugs available as soon as possible for those who could suffer less. The dreadful dilemma for doctors is whether they should treat the sickest first or those who could be prevented from getting sicker. I welcome the opportunity the scheme represents potentially to prevent that dreadful dilemma in doctors’ surgeries and hospitals.
It is a very delicate matter to argue about who, among those who need treatment, should be prioritised. Unfortunately, that is exactly what we have to do in this place on behalf of our constituents. Doctors have to make such decisions every day. On balance, I think it is right to seek to fast-track those who are in the early stage of disease. The dreadful dilemma could perhaps be stopped, given such a historical wrong done to our fellow human beings. I could not possibly look the third constituent of mine in the eye and say that today I argued against possibly stopping that dreadful dilemma by arguing against the Minister’s proposal. She is doing a courageous thing with that particular proposal.
In closing, I want to return to my constituent Annie Walker who has passed away. I supported my constituent and corresponded with her over many years. My heart goes out to the family and friends she leaves behind. Every individual death emphasises the tragedy of this scandal. It is a national scandal and a national tragedy. The fight must go on. Annie fought that fight during her lifetime, with my support. Many who have spoken today and the many who are able to be in London today are also fighting the fight. I urge anybody affected who has not yet come forward to do so and to look at the consultation before it runs out in a few days. We in this place can only attempt to get this right if we have information from those affected. That is our job.
Does the hon. Lady agree with the sentiments of my constituent Steve Bertram, who I believe is here today, who came to my office last week? He has a face that many would recognise. He looks like someone who has been repeatedly kicked in the teeth. He said:
“Our government needs to act for English Haemophiliacs – generously and properly. Like me, I hope anyone who responded to the consultation told the government in no uncertain terms how paltry, mean and demeaning the offer is.”
I will let the words of a fellow Norwich person speak for themselves. I am glad that the hon. Gentleman has been able to vocalise them for his constituent.
It is up to us in this place to get this right and to listen to all such points carefully. Annie Walker once said to me that she did not have the strength to keep on fighting. Sadly, that has now come true. It is up to us to continue to speak out. It is up to us to right this historical wrong. It is up to us to do that with both finance and NHS treatment. I urge the Minister to listen carefully to what has been said today, but to listen even more carefully to the consultation.
One of my first actions, following my election to this place, was to highlight the plight of those infected with contaminated blood in the 1970s and 1980s. I did this by writing to the Department of Health, following discussions with Julie, a constituent of mine. In July 2015, I also tabled early-day motion 334 to recognise
“the ongoing hardship and challenges faced by those infected with contaminated blood” and to encourage
“the Prime Minister to implement promised arrangements to distribute an additional £25 million to those affected as soon as is practicable.”
Infected blood is one of the most terrible chapters in the history of the NHS. Many people have died or suffered long-term disability and hardship as a result of infection. Relatives have had to sacrifice careers to provide care and support, and in some cases partners and loved ones have become infected. Patients, families and carers have dealt with those difficulties with immense and enduring courage. My constituent Julie was born with a rare genetic condition known as Ehlers-Danlos syndrome, which requires treatment, including blood transfusions. She was infected with contaminated blood in 1974—42 years ago—while a young woman with her whole life ahead of her. Following a transfusion that September, she quickly developed symptoms of hepatitis and suffers today from a range of chronic and debilitating health conditions that have rendered her unable to remain upright for longer than 10 minutes at a time without becoming fatigued, owing to liver and lung damage arising directly from the transfusions.
Although now living in Scotland, Julie was infected in England. The liability for the current ex gratia schemes is based on where the individual was infected, rather than residency. This means that the English schemes and the consultation recently launched by the Under-Secretary of State for Health, Jane Ellison, are responsible for supporting Julie and delivering the financial support she will require.
Julie is currently classed as Skipton stage 1 and has received an ex gratia payment of £20,000 but receives no annual award. Her medical condition means that she has great difficulty meeting the qualifying criteria for stage 2, which would increase her ex gratia payment and provide approximately £15,000 per annum in badly needed support. I have reviewed her correspondence with the Skipton Fund on the reassessment and have found it unhelpful, perhaps even deliberately obtuse.
I thank my hon. Friend for giving me the opportunity to raise the case of my constituent Susan Webster who lost her partner, Charlie, almost five years ago, after he contracted hepatitis C as a result of contaminated blood, leaving her and their now 14-year-old daughter without any financial support. Since Charlie’s death, Susan and her daughter have received little or no Government help and have had to approach the Skipton Fund themselves. Today, they remain in a state of limbo while the Government dither over the future of the UK scheme. Does he agree that the Government, having dragged their heels for years, must now act to support the survivors of this scandal without any further delay?
I absolutely agree with my hon. Friend. It is a tragic case that he outlines, and I will come to his specific point shortly.
The UK Government have estimated that the Department will spend a further £570 million over the projected lifetime of the reformed scheme, but analysis shows that the Department wants to cap annual payments for victims in England at £15,000 and that these will no longer be index linked and so will not increase with the cost of living. The UK Government also want to remove regular discretionary payments, including the winter fuel allowance and the £1,200 per child annual payment.
On the point about the cost of living, I have several constituents in the same situation. One suggested that pension payments be increased to at least the level of the living wage. What does the hon. Gentleman think of that idea?
I would absolutely support that suggestion. I would also note that many victims in England now face cuts of up to £7,000 a year, together with cumulative losses from the freezing of six annual payments to patients of £15,000 a year, time-limited support for partners and spouses after patients’ deaths, and the ending of help for the children and parents of those affected. Moreover, victims will no longer have access to grants for support with such things as mobility issues and modifications to property; nor will they have access to free expert advice.
The Haemophilia Society, which campaigns on behalf of victims of this scandal, has said that it has deep concerns about the proposals for England. It compared the proposals for England to those in Scotland, saying:
“These concerns are compounded by the fact that similar proposals in Scotland offer more generous payments to its affected community. There is a risk that, if both sets of proposals are accepted (as they currently stand), affected people in England will receive much lower incomes that those in Scotland.”
The Scottish Government have already provided £32 million over the last 10 years to the current UK-wide schemes, so they are already committed to support those infected in Scotland. Nevertheless, on
This is a pure inquiry. Would it have been open to the Scottish authorities to say that the increased levels of compensation would be available to all those affected within Scotland rather than on the basis of where people had acquired the infection?
I do not think that would be possible because it would be an admission of liability, and these are ex gratia schemes with no liability in response to the payment.
In addition to the measures I have explained so far, a new support and assistance grant scheme will be established in Scotland to administer and provide more flexible grants to cover additional needs. Scottish Government funding for this scheme will increase from £300,000 to £1 million a year. In real terms, the new arrangements will mean additional financial support is available for all categories of infected people and their dependants in Scotland. In Scotland, we are clear that this is not the end of the process and that there will be ongoing work with patient groups on this matter.
In overwhelming contrast to the Scottish Government, the UK Government are proposing to cut funding for victims of this scandal, leaving vulnerable people thousands of pounds a year worse off. It is extremely disappointing that the UK Government do not think it important to support those who were infected in England, and it is clear that the proposed cuts demonstrate that the UK Government’s priorities lie with austerity, not with the victims of this terrible scandal. It is time for the UK Government to support those whose lives have been ruined by this unprecedented scandal. For people such as Julie, anything less literally heaps insult on injury.
I congratulate Diana Johnson on securing this debate and on the valuable work that her all-party parliamentary group is doing in this area.
All Members, I am sure, receive a huge number of letters and emails from constituents, and hold face-to-face meetings with them on a huge range of issues. Just occasionally, an email arrives that has the power to stop us in our tracks, simply demanding the wider attention of the whole House. On
With her permission and with the leave of the House, I would like to read a short extract from the email I received from Mrs Threakall, which sums up better than I could the real human impact of this national tragedy:
“my late husband was a haemophiliac who”, in the 1980s,
Her children lead
“compromised lives compared to the ones they should have led. I have severe financial difficulties to this day, despite doing everything possible to help myself recover from a wrecked career as a…teacher, followed by retirement at 50 on a tiny pension. Since then I have worked in hospitals, but following three major surgeries in seven years have now more or less retired.
I have been campaigning for thirty years for truth and justice”.
Those are two crucial elements that we must discuss today: truth and justice.
I appreciate the hon. Gentleman’s generosity in giving way, and I share his concern about the impact on spouses. My constituent Mr Thomas Farrell was given 11 units of contaminated blood in 1989, and tested positive for hepatitis C nine years later. One of his biggest fears is that his wife will not have the security of knowing that she can pay the mortgage should he pass away before her. Does the hon. Gentleman agree with me that bereaved partners and spouses should have security and proper financial support for the rest of their life?
I absolutely agree that we must look beyond those whose are immediately affected personally by the health effects of contaminated blood, and take account of the effects on their wider families and loved ones. I shall say more about that later.
Truth and justice are what this is all about, and I believe that we have reached a stage at which we really could deliver both. The Government’s consultation is under way; the Under-Secretary of State for Health, my hon. Friend Jane Ellison, Friend made her announcement in January; and there is now a groundswell of public opinion. Those three factors mean that we are at a crossroads, and we may never have this opportunity again. Campaigners acknowledge that since 2010, the Government have listened. We have made progress—more progress than we have made in the past.
This, however, is the position: the Government’s consultation is due to close in just three days’ time, and it is clear that there is still a great deal of unhappiness with the options on the table. The status quo—the existing scheme, with its confusing and inadequate provision—is not acceptable, but neither is the alternative, which would seem to fail to tackle the fundamental problem of fair financial provision both for those who received the contaminated blood and are living with the health consequences and, importantly, the families and loved ones who care for them or grieve for them.
We must be realistic. Like nearly every decision that we make in this place, this does in the end come down to money, and we know that money is tight. It would be unrealistic, indeed irresponsible, to stand here today and ask for a blank cheque to be written, or for funds to be taken from equally worthwhile projects elsewhere in the health budget. What I appeal for today from the Government—on behalf of my constituent, and other constituents who are with us—are two commodities that are perhaps even more precious: time and understanding. I ask for time for these people, including my constituent, to have their cases adequately heard by the Government, and not to be bounced into accepting one of two options, neither of which they believe to be fair or adequate.
The hon. Gentleman is making a very powerful speech on behalf of his constituent. Does he agree that it would be a tragedy if, at the end of the consultation, some of the victims were worse off as a result of it?
None of us, of course, would want that. We must wait to hear what the Minister says at the end of the debate, but I am sure that we are all aiming for the same result. The least that the people who have fought so hard for truth and justice deserve is a fair hearing, but for many, time is running out. They find themselves in the heartbreaking position of facing the inevitable health consequences of what was, after all, an historical failure of the national health service.
I, too, massively applaud the work of the all-party parliamentary group, which has been working for so long. My hon. Friend has mentioned time. I have just received a text from one of my constituents, who does not want to be named, but who points out that the stark reality is that those infected are dying at the rate of one a month. For these people, time really is of the essence.
Order. I believe that there was an informal time limit of seven minutes, and the hon. Gentleman has a minute to go. If we cannot get it down to six minutes, I will have to impose a formal time limit, which I do not want to do.
I understand, Mr Deputy Speaker; thank you.
My hon. Friend Rebecca Pow makes the perfectly reasonable point that time is running out, and that these people find themselves in an impossible position. I do not seek to extend this process unnecessarily, but the
I also said that we needed understanding. These events have devastated the lives of many people, including my constituent, Sue Threakall. I shall end as I began, by quoting her words in an email. She says:
“At the moment I haven’t the slightest idea how I will be able to manage and am in complete despair. Over the last week it has occurred to me several times that after fighting this for over three decades…I really don’t want to carry on.”
I say to my constituent and to the other campaigners who are with us today: do carry on, and do keep telling us what we need to know. As my hon. Friend Chloe Smith, who has just left her place, said, it is by hearing the true life stories of those who have been affected that my hon. Friend the Minister, who I know is listening, will be able to take very careful note. Let us do all we can to deliver what my constituent and many thousands of others want and deserve: truth, fairness and justice.
Thank you for calling me to speak, Mr Deputy Speaker. I would like to join other Members of Parliament in thanking my hon. Friend Diana Johnson for her work on this matter, which, among other things, has enabled us to take part in this debate.
Everything that we deal with in this House of Commons is about people, whether they are Syrian refugees or steelworkers from south Wales. Whatever we do deals with the lives of people, and we are somehow led to believe that the larger the number of people involved, the more important the issue will be. That is a basic problem about this issue. There is not, sub specie aeternitatis, a huge number of people who are affected by blood contamination, but those involved have been affected in a way that damages their lives every minute of every day. I would not have known about this issue if it were not for a person in my constituency called Mohibul Islam, who has been in contact with me year after year—I now have a file of correspondence so enormous that I could not bring it into the Chamber—and who has asked me to participate in the debate and to ask a specific question.
Let us be clear about this: I do not accuse the Government of being heartless. It would be easy to do that, given the suffering of the people involved. However, the Government do not seem to grasp the fact that a process that should have been followed to produce an effective outcome has been left in such a way that we still cannot believe that we are going to get a result. We still cannot believe that the outcome will be known to, and potentially satisfy, the relatively small number of our constituents who are suffering in this way. Also, when I say that this involves a small number of people, I must stress that it occupies 100% of their lives.
It may well be that every Member in this Chamber has in her or his family someone who suffers from some deeply upsetting illness, but unless one knows about blood contamination, it passes us by. The Government have not given the matter the active attention that it deserves, and that may simply be because the number of people affected is relatively small. This is not in any way an accusation against the Government—I will make accusations against them when I need to—but there are no votes in this, because the number is small. However, the numbers suffering cannot be pinned down by statistics. Unless any of us in the Chamber have actually suffered from blood contamination or its consequences, we do not really know about it, even if we are told.
Mohibul Islam has asked me to put a specific question to the Minister, and I will ask her to respond to him, so that I can let him know that his voice has been heard in the House of Commons. He wants to know why, instead of raising payments and bringing them above the poverty threshold, the payment for the dual-infected group is being cut substantially, leading to some people being £7,000 a year worse off. For someone with tax relationships with Panama, £7,000 may not seem like a large sum of money, but it is everything to somebody who needs the money and goes day after day without any prospect of alleviation.
We have heard Government Members say that money is tight, but like my right hon. Friend’s constituent, my constituent Mr Dave Gort has had to cover the cost of his own treatment and is facing a decrease in the annual payment. He will also lose additional support such as winter fuel payments and the prescription prepayment programme. Those affected also have issues with insurance, for example, with premiums being loaded even when the virus has cleared. I support my right hon. Friend’s points about hardship and the hit that the change represents.
What my hon. Friend says is remarkably valid and I concur with it. As a consequence of what she and other Members have said and, most of all, of my communications from Mohibul Islam, I want to know why the Government cannot at least provide parity with Scotland. That would not solve the problem, but it would to some extent alleviate the financial consequences.
As I said, every one of us in this House, either personally or through someone in our family, has suffered the effects of some kind of health-related problem. In my case, my brother and one of my sisters died in suffering after a long experience of Alzheimer’s disease. There are many ways in which the human condition can be hurtful or troublesome. I am not looking for a solution—frankly, I do not believe that there is a solution in health terms—but I am looking for the Government to show that they care, that there will be an outcome, and that that outcome will, as a minimum, alleviate the anxieties and concerns of those who live with this affliction every single day.
It is a pleasure to follow the Father of the House, Sir Gerald Kaufman, and to be able to follow on from all the work done to bring this debate to the Floor of the House. I congratulate Diana Johnson on securing it; it was a pleasure for me, as a member of the Backbench Business Committee, to support the proposal that this debate be held today.
Contaminated blood and the impact on victims was one of the first issues to come into my inbox after I was elected. Someone came to my surgery who had had a condition but had been otherwise healthy, only to find that they were to have decades of pain and disability because of the treatment they had for that condition—that is almost heartbreaking. Virtually all their life prospects have disappeared because of a treatment they received that they thought would make them better.
It is worth examining the scale of this disaster in our NHS system. We are talking about 4,700 people with bleeding disorders and 28,000 other people becoming infected with hepatitis C; and 1,200 with bleeding disorders and 100 other individuals getting HIV. Of course these people were getting that condition at a time when the medical understanding of it was very limited and the life expectancy was incredibly short. Thankfully, many people have benefited from the advances in medical science since 1985, which have allowed them to keep living, but they still face all the issues that come with that illness and—let us be candid—the stigma that still comes with it from those ignorant about what can cause it.
The issue is about looking at the time that has elapsed. I am sure that, like me, my predecessor, Adrian Sanders, who pursued a number of cases diligently during his time as the MP for Torbay, would not have expected that after 18 years his successor would still be talking about this issue and still be having to speak up for the constituents affected by this scandal, at least one of whom is in the Gallery today. We know that a patchwork of five schemes is in place, and reference has been made to that. To be fair, £390 million has already been paid out, but the impact on these people has been so devastating that it is right that we are looking again at what the appropriate level of compensation is.
It was appropriate that last year the Prime Minister issued an apology. That is something so simple, but it took until 2015 for it to happen. I agree that we are not in a court of law today, but it is right that we seek to provide some form of justice to those who for so long have found themselves on the receiving end of life-changing conditions.
We have used the word “justice” all the way through this debate. I have listened to it all and I was not intending to intervene, but I must say that in fact there is no justice we can give people who have contaminated blood—that has been taken away from them. All we can do is give them the best possible help, financially and in care terms. They will never get justice, and it is improper to suggest they can—we cannot do it, it is too late, they have had that taken away and money will not compensate.
I thank my hon. and gallant Friend for such a thoughtful intervention. We cannot give them justice; we cannot restore them back to where they were before the impact of this scandal, but we can compensate them. We can try to mitigate the impact and give them a life that is appropriate, as best we can. Today’s debate is right to focus on that.
My hon. Friend has mentioned some of the impacts, and I think there is an impact relating to housing. A lot of people with very low incomes are finding it difficult to access reasonable housing, including my constituent Sally Vickers, who has been told by Portsmouth City Council that she cannot be rehoused, despite a threatening condition caused by receiving contaminated blood. Does my hon. Friend not agree that the Minister needs to advise local authorities to make sure that the housing is adequate for such people?
I thank my hon. Friend for that intervention. This is also about making sure local authorities are aware of the support packages and the possible impact on benefit calculations. During my time as a councillor in Coventry I was approached by someone who was constantly being invited in for a fraud interview because they were receiving funds from one of the trusts. Those trained in these trusts have mostly retired now because of the time that has elapsed since this was put in place; the numbers involved are very small so new members of staff would not be so familiar with this. To be fair, that particular incident was resolved.
Initially, my constituents were pleased to hear that a consultation was going to happen and that £25 million would be available. They waited for it, but when it was announced it is safe to say that they were extremely disappointed. The problems, which have already been listed, include the fact that recipients could receive less than they do now, as some of the top-ups and support may be abolished. Some of the support could rely on assessments. I say that tentatively, as I have looked at this issue of repeated assessments. As a member of the Public Accounts Committee, I have looked at the work of the Department for Work and Pensions, and there is no great enthusiasm to see more people going through an annual assessment, particularly when, for many of these people, only a miracle cure will make any form of difference. The conditions are lifelong and permanent. They have been with them for decades and are not likely to be something from which they will recover.
I hope that the Government will relook at the proposals they put out for consultation, and take on board the comments from the all-party group, which have been put forward in a constructive and genuinely helpful way. I ask the Minister to take a view on what is being done in Scotland, and to explain why the UK Government do not think that the Scottish model would be appropriate here. If there is a particular reason, let us hear it. For me, it seems that the model has been welcomed and could be taken forward here.
I do hope that, after 30 years, we can finally take a step forward, deliver justice and ensure that people get the compensation for which they have waited so long. They need a resolution to these matters, which have been going on for decades.
I am extremely grateful to you, Mr Speaker, for giving me the opportunity to speak in this debate today and to the Backbench Business Committee for allowing such an important issue to be brought before the House. I add my praise to my hon. Friend Diana Johnson for her outstanding leadership. As a member of the all-party group on haemophilia and contaminated blood, I feel strongly that it is right that the House consider this matter and that more should be done. I also feel that it would be unconscionable if any reform that did come about actually reduced the support currently being received by people who have been victims of this appalling episode in the history of our public health system.
As we have heard, between the mid-1970s and the late 1980s, 4,670 people with haemophilia were infected with hepatitis C through their NHS treatment and the transfusion of contaminated blood. Of those, 1,243 people with haemophilia were also exposed to HIV. Almost half of those infected with hepatitis C, and almost three quarters co-infected with HIV and hepatitis C, have since died. Many have experienced poverty and discrimination as a result of their infections. For so many of the victims, the simplest of daily tasks can become difficult and, in some situations, frightening. Such a scenario can be seen in the life of one of my own constituents, Mr Michael Gee, with whom I have worked on this issue since I first met him at a constituency surgery in 2013. Alongside many other victims, Michael has travelled to be here today to listen to this debate. The determination to be here is testament to the importance of these decisions. I pay tribute to Michael and to everyone else who is here today and who has been placed in a similar situation.
As a young boy, Michael was accidentally scalded when reaching for a pan of boiling water on the cooker while his mother was making dinner. Rushed to hospital, he underwent a number of blood transfusions. Due to the shortage of blood donors, the Government of the day had purchased blood supplies from abroad, and one of the bags used contained contaminated blood.
Michael was diagnosed with hepatitis C in 1987, and it is a condition that he has had to live with throughout his adult life. Hepatitis C causes chronic fatigue, organ damage as well as significant cognitive impairment and damage to the auto-immune system causing arthritis and muscle problems. There are also a whole range of significant practical everyday problems. Hepatitis C sufferers, for instance, struggle to get mortgages or proper insurance.
Michael is now a father, and due to the nature of his condition he is restricted in his interaction with his own child. Terrified that an open wound could transfer his virus, he often has to wear gloves to put his mind at ease, and keep the safety of his children paramount. Such a scenario is difficult to comprehend for any of us who are parents and we would not wish to see anyone placed in that position.
I do not think that any Government have done enough on this matter. In 2009, the Department of Health reviewed the support for the victims of the disaster, but 80% of those who were infected with hepatitis C were excluded from the financial help. That was on the grounds that their illness was considered to be at stage 1. They had been categorised as stage 1 because they could not prove a certain stage of liver disease. To make things even more unfair, there were serious differences in the help given to people with HIV and people with hepatitis C. One of the biggest and most obvious anomalies was the fact that if someone with HIV died their spouse could apply for ongoing financial support, albeit means-tested, but if someone with hepatitis C died their partner received nothing.
The entire support system is inadequate, and is administered by a multitude of charitable trusts with different rules and criteria, which makes it harder to access. In 2016, the Government are in danger of repeating the errors of the past and once again letting down the victims and their families. Last month, victims of the disaster received letters from the Department of Health consulting them on reforms that could leave some of them up to £7,000 a year worse off. This is not acceptable, and it must not be allowed to happen.
My hon. Friend mentioned the impact on families. My constituents, David and Vincent Farrugia, tragically lost their father Barry after he contracted HIV and hepatitis C from contaminated blood. The families and the bereaved are not included in the consultation—there is no provision for children, dependants or bereaved families. Does my hon. Friend agree that children and dependants who are now adults should be included in the consultation?
I agree with my hon. Friend. When we learn the details of these cases it is clear that people’s entire lives have been grievously affected, and it is only right that everyone associated with those injured parties is given the opportunity to take part in the remedy that is required. I would point out to the Department of Health that almost all of the victims of this disaster were infected at least 30 years ago, and there is substantial research evidence showing that by now they have suffered significant damage to their health and earning potential. That must be taken into consideration.
The cap proposed by the Government on annual payments once again shows the lack of compassion and reasonableness faced by these people. The fact that infected spouses will stop receiving payments is grossly unfair. The Prime Minister apologised in the House to the victims last year for what they had had to endure, saying that it was
“difficult to imagine the feelings of unfairness that people must feel”—[Official Report, 21 March 2015;
Vol. 594, c. 1423.]
Given the latest proposals, do not those words now ring somewhat hollow? The chilling truth of this tragedy is that about half of the estimated 5,000 haemophiliacs who were infected have died without ever seeing justice.
I would ask all Members in the Chamber to think not only of those affected, such as Michael, but of the victims’ families, who rely on financial support, which provides the security and stability they need and deserve, and which we as Members of this House have a duty to protect. This is one of the worst episodes in the history of public healthcare and the NHS. Any sense of natural justice leads, I believe, to the conclusion that it must be addressed. We cannot give these people back their health or their dignity, but we can give them closure. We can give them proper financial support—and, frankly, it is time we did.
In my view, real progress has been made, culminating in January 2016 with the Under-Secretary of State for Health, Jane Ellison, outlining an additional £100 million, with principles laid out as part of the consultation.
As the Minister knows. I have followed this issue incredibly closely during my time in the House. It has been raised with me repeatedly by my constituent and victim Steve Dymond—the Minister is familiar with his case. Another constituent, Mr Lee Stay, has made himself known to me, and I am here to speak for him too. In the 1980s, he attended the Lord Mayor Treloar college in Hampshire, which was a specialist boarding school with a wing for haemophiliac children. He was given factor VIII, but the blood products contained HIV and hep C. He had a liver transplant, and now suffers from Burkitt lymphoma. He cannot work, and his house has been repossessed.
I know rather more about Mr Dymond, who is a tireless campaigner and advocate for his fellow victims. He has not been able to attend today. He is extremely unwell as a result of his hepatitis C infection, but I know that he will be watching and that the whole House will wish him and all the victims we have heard about today recovery where at all possible. Steve Dymond was afflicted by hepatitis C through no fault of his own, having received contaminated blood as treatment for haemophilia, as we have heard from many cases this afternoon. Every day of Steve’s life since his infection has been lived through the lens of that condition. His capacity to work, to enjoy time with his family, to travel, to holiday and to do all those normal things that we take for granted has been fundamentally affected by his infection.
My hon. Friend refers to family. I want to raise the case of a constituent of mine, which I had the opportunity to talk about when we last discussed this matter in July 2015. My constituent, who was affected by contaminated blood, was trying to have a child through IVF. The couple were entitled to one round of IVF through the normal procedures, but they applied for a second round. Despite the fact that their fertility was affected by contaminated blood, they were denied a second round of IVF and had to spend £8,000 of their family money in order to conceive a second child, who has just been born, to their delight. Does my hon. Friend agree that, in the context of family and support, it is extraordinary that my constituent had to go through such hardship to extend his family?
I entirely agree and thank my hon. Friend for his comments. That example highlights the issues faced not only by the victim, but by the family from young to old. It is remarkable that special cases such as he describes are not recognised by the system. I hope that as part of the review those instances will be resolved.
What happened to Steve, Lee and all the others whom we have heard about today was wrong. In many cases it was avoidable. They were blameless victims who were handed debilitating, dehumanising—as my hon. Friend’s example shows—and degenerative infections that have caused heartache to all those affected. Although responsibility obviously lies with the commercial suppliers of the products, the NHS unwittingly administered them, and society owes the victims a debt. We must do the best we can to alleviate the pain and illness that victims have suffered. The decision that this House and the Government take should place those victims front and centre.
There are two threads to the approach that we should take. First, we must provide treatment for the victims, who suffer from various complex conditions and symptoms that require advanced and expensive care. It is right that we invest in the care and treatment available for those conditions, and in research. Thankfully, medical advances are making rapid progress. Secondly, we must ensure that as much restitution as possible is made to those who have suffered in that way.
My hon. Friend rightly talks about the blameless victims and the need for compensation. My constituent, who wishes not to be named, asked me about her husband, who was infected in the late 1970s and 1980s. He was a mild haemophiliac whose life was not previously at risk, but he is now living with conditions caused by contaminated blood. Does my hon. Friend agree that in the consultation on the proposals it is important that we consider the long-term impact on such families?
My hon. Friend makes a powerful point. The issue is not just money or the obvious conditions. A holistic approach is needed to what those families have faced. The example that she gives of a minor condition is truly shocking.
Money has been discussed at length this afternoon. Money can never bring back what victims have lost, but it is important that the Government do what they can to bring dignity to the shortened lives of many of those who suffer.
I welcome what the Government have done in relation to treatment. On the new generation of drug treatments, the National Institute for Health and Care Excellence is developing guidance on three further treatments, and NHS England announced last year that it had made available £190 million so that patients with confirmed cirrhosis from hepatitis C can benefit from new treatment options. The Department of Health estimates that around 550 individuals infected with hepatitis C through NHS-supplied blood and blood products can now access the new treatments under the NHS’s interim commissioning policies.
Medical advances will continue, and there will be beneficial new treatments around the corner, which I hope will stem much liver damage. They may prove to be the salvation for many, but it is early days in this pioneering field of research. There remains some confusion from victims about where the money is coming from, so I would welcome the Minister’s clarification on that. I will continue to push for the best treatments available, and for research so that even better treatments are around the corner.
On support for victims, I await the Government’s conclusions on the current consultation. Central to all of this is the need to bring dignity to all those afflicted. Victims tell me that they feel that the current system has in some way belittled them and that it is insufficient. Clearly a more suitable settlement for such victims is needed. Care for bereaved next of kin, as we have heard this afternoon, remains at the forefront of victims’ minds. The settlement needs to be flexible, and I await the proposals that the Government bring forward to address these concerns.
It saddens me that some victims, including those in my own constituency, do not view the Minister as being committed to this cause. I personally refute that. I have found her to be diligent and dedicated to this tragedy. She has been honourable throughout. She has spoken honestly with me, and with great compassion. On every occasion I have spoken with her about the issue, often late in the Division Lobby, she has been both knowledgeable and committed to righting this wrong. Campaigners and victims, such as Steve and Lee, will not settle for a halfway house. Although we can never turn the clock back, I am confident that the Government will do what they can to give dignity to all those affected.
Order. We are now getting closer to five minutes as the informal time limit on speeches. I ask Members to keep to five minutes, because otherwise we will not get everybody in.
I, too, pay tribute to Diana Johnson for her amazing campaigning work, and indeed to the other hon. Members who helped secure this debate. I also pay tribute to the organisations Tainted Blood, the Contaminated Blood Campaign and the Haemophilia Society, which have campaigned for years to get justice for so many people. We should also pay tribute to the many individuals who have fought on and on for justice, often in very difficult circumstances.
The Minister should reflect on the extraordinary unanimity of view in this debate, on the reflections in the consultation, on the proposals that the Government have put forward and on the need to think again. This is not a party political issue, because all Governments are to some extent culpable—Labour Governments, Conservative Governments and, indeed, the coalition Government. This is a moral imperative—there is no doubt about that. We have to offer these people justice, and the Government must accept that.
The Government set out the principle right at the start, in their introduction to the consultation, by stating that they accept and recognise their responsibility to everyone infected as a result of NHS treatment, but that leaves out those people affected. This is about not only those infected, but those affected. What about all the loved ones, the children, the spouses and the partners bereaved as a result of loss of life? The Government should accept responsibility for them as well. They have to accept that when they respond to this consultation exercise.
Serious concerns have been raised about this set of proposals. The Prime Minister said—his words were very clear—that:
“We will help them more”—[Official Report, 11 March 2015;
Vol. 594, C. 289.]
Yet the proposals, when we see the detail, include a proposal to cut the amount of money that individuals receive. That is not consistent with what the Prime Minister said, so surely the Government must think again. It is surely unconscionable that people in very real need will lose out financially as a result of these proposals. What assessment have the Government made of the winners and the losers? How much will some people lose? It is really important that the Government are open about that. If the Minister cannot respond today, I would be grateful if she wrote to hon. Members to set out the assessment of the amount some people will lose, and of how many people are likely to lose, as a result of these proposals.
As my right hon. Friend Mr Carmichael and others have said, it is surely not right that people in Scotland benefit more than people in England. Surely everyone should be treated exactly the same as a result of this scandal.
I will not, because I am concerned about the time.
Ending inflation-proofing actually means that we plan a cut to what people are paid every year for as long as there is inflation. Surely we cannot begin to justify that.
I have a problem with the principle of funding new medical treatments at an early stage by taking money from people’s financial support. That surely confuses two principles. We should leave intact the money that is available for people’s financial security.
I am concerned that the money will come from the Department of Health. The impact assessment talks about the other things that cannot be done as a result. Surely the money should come from the Treasury. In the Budget, the Government cut capital gains tax. I heard recently of one individual who will benefit to the tune of nearly £1 million as a result. These are political choices. Do we as a country want to cut capital gains tax and give large sums to very wealthy people at the same time as cutting financial support for people who have lost out as a result of a national scandal? That is surely unacceptable.
I therefore say to the Minister: accept what the Haemophilia Society says, withdraw these proposals and think again.
It is a pleasure to follow Norman Lamb. I thank fellow members of the all-party group on haemophilia and contaminated blood for securing the debate. I pay particular tribute to Diana Johnson, who chairs the group superbly, and I start my remarks the way she ended hers—by saying that we are debating compensation proposals for what has been described as the worst treatment disaster in the history of the national health service.
Some 80% of victims are critically ill as a result of receiving contaminated blood and blood products. They suffer the side effects of past treatments, and they are in financial hardship, having been forced out of employment precisely because of the health issues caused by infection. They, their families and the families of those who have died should be treated with equal primacy.
Only weeks after my election, I was contacted by my constituent Cathy Young, who is a stage 1 widow. Cathy is a member of the Scottish Infected Blood Forum and a passionate advocate on this issue. When I met her last week, I asked her to give me her thoughts on what I should say this afternoon, so let me describe them for the next few moments.
“I don’t know due to the Scottish Government’s recently accepting the review group’s recommendations what can be said, but what I would say is how can the UK Government consultation regarding other UK widows be so far off the mark compared to Scotland. There is more work to be done particularly in relation to extra hepatic manifestations, other illnesses caused by hepatitis C other than liver disease. What will the UK Government do to address this?”
She sent me an email today saying she was sorry that today sees the funeral of another victim of contaminated blood.
As Mr Carmichael and my hon. Friend Dr Monaghan have pointed out, the Scottish Infected Blood Forum has identified 25 families resident in Scotland who would be covered under the proposed UK Government scheme, as the original incident took place while they were resident elsewhere in the UK. Therefore, MPs representing constituencies in Scotland may find themselves representing constituents with two distinct offers of compensation. That is not fair—it is completely unjust.
The Haemophilia Society has sent an email, which I think the Father of the House has touched on, about the differences between the UK and Scottish Government proposals. It is worth emphasising those differences for the benefit of those watching these proceedings. Those in the rest of the UK with advanced HIV or hepatitis C will get £12,000 less in annual payments. Those elsewhere in the UK who are co-infected with hepatitis C and HIV will get £7,000 less in annual payments, and there will be limited or no support available for the widows, partners and children of those infected. There will be substantially reduced ongoing support for those elsewhere in the UK.
The Scottish Government have, in effect, committed to almost doubling the support they give to victims, widows and widowers, and dependent children. The Haemophilia Society is concerned that, without significant revisions to their proposals, the UK Government will fail to follow the example set by the Scottish Government in offering victims of this terrible tragedy and their families the support they deserve. I hope that Ministers in this place recognise that and that they will address the issue.
There is now a very real concern that the UK Government have broken their promise to deliver improvements to the current scheme of payments. In early 2015, the Prime Minister said:
“I want us to take action. I am not sure whether that action will ever fully satisfy those who want this wrong to be righted, but as a wealthy and successful country we should be helping these people more. We will help them more, but we need Penrose first, and if I am standing here after the next election it will be done.”—[Official Report, 11 March 2015;
Vol. 594, c. 289.]
“In total, of course, hundreds of people in Scotland died after being infected through blood transfusions and even after all this time it is still hard to imagine the difficulties, the anxieties, and the hardships that people and their families have had to contend with.
In addition to dealing with the illness itself, you’ve had to cope with uncertainty, with sorrow, and with grief. Many people, of course, feel stigmatised despite being utterly blameless. And I know that people still fight daily battles, both physical and physiological, to achieve some kind of normality in their lives…We as a society have a moral obligation to help people who are infected with an illness by the Health Service”.
Let us use those words as a guide to how we take this issue forward, compensate the victims and their families, and provide for them what they truly deserve.
It was 1958 when Dr Garrott Allen at Stanford started discovering the risks of contamination in blood. Over the next 20 to 30 years, he spent his time trying to persuade people that commercial blood companies probably knew early on—they certainly knew later on—that one in seven of those from whom they were taking donations were at high risk of contamination. It was not until 1991 that Crown immunity was lifted from the blood products laboratory. If people look at the taintedblood.info website, they will see the chronology, which is pretty accurate and very useful.
That does not solve the problem faced by the Government, Members of Parliament and those affected. I propose that, while the national health service should be treating people, responsibility for dealing with the compensation and trying to make up for the costs to those affected should be taken away from the Department of Health and held jointly by the Cabinet Office and the Treasury. I think that that is the only way of solving the problem of Scotland having to determine where those affected got the infection, rather than their actual situation and where they live. If we are going to have a national approach that not only recognises the autonomy of the Scottish Parliament and the Scottish health service but treats people fairly, we have to find a way of getting the non-health aspects away from the Department of Health. I ask the Government to consider whether there is any way of doing that effectively.
Moving on to how people should be treated, I have received a message from someone on behalf of the nearly 200 co-infected people and the 2,220 mono-infected hep C stage 1 victims. Here are some words directly:
“Now about the way they are blackmailing us over the drugs!
I and every other Haemophiliac have never paid for our Factor VIII, I have never paid for any of my HIV anti viral drugs, and my other prescription charges are covered by a pre payment certificate, my blood tests, ultrasounds scan, Fibroscans, and all my appointments are covered by the NHS? So why would they even consider asking us if we think the money should come out of the additional £100 Million they have offered as financial help?”
The answer to that is that it should not. By the way, to those for whom the proposals on which the Government are consulting would lead to a reduction in income, the Government certainly should say that they need to be red-circled—that their money will remain the way it is—and no one should have their money reduced as a result of the changes. We are trying to extend help to people, not to reduce it.
I turn to another quote:
“Co-infected Haemophiliacs need a voice in the debate, we are so few left, dealing with two virus as you know has increased complications. We need to be respected and remembered as are the Scottish Haemophiliacs in the midst of all the mono Hep C victims.
Being co-infected with HIV/AIDS and Hepatitis C is the equivalent of 2nd stage Hepatitis C, but at the top end where someone has received a liver transplant, has a limited life expectancy and has to take medication every day for the rest of their lives or die, but the co-infected also has the additional problems of having the illnesses both these viruses can cause—even to the point doctors cannot tell which virus is causing the problem. On top of this we have the life-long secrecy and stigma attached to HIV/AIDS virus.”
It seems to me that we have got to say to Government that they may be trying more now than Governments have tried before, but it is not appropriate for Department of Health Ministers to have to balance this against other treatments. It must come out of the Department of Health so that the money can go properly to those who have suffered because we made mistakes and the American blood companies made mistakes. We need to recognise that. I am not talking about liability; I am trying to deal with what should happen now.
As it happens, the first person in my family to take an AIDS test was my mother, who had a serious operation and received lots of blood. The second was my wife, who received eight units of blood in 1975 when the issue started to come out. I have my blood tested for HIV/AIDS and hep every 10 weeks as a blood donor. I only wish that we had remembered what Richard Titmuss said in his book about giving blood, “The Gift Relationship”. We do it for free, and we do not know who is going to benefit. The people who benefit do not know where the blood comes from, but at least it comes from people who have been tested to make sure that it is safe for our blood to be passed on.
I add my thanks and congratulations to my hon. Friend Diana Johnson on what she has said today and on her outstanding leadership on this issue. She will be encouraged by the commonality of view—it goes further than consensus—across the House, and I hope that the Minister will take note. Back-Bench debates are often not party political, but I cannot remember another debate in which Members’ sympathies have been so clearly at one. I am sure that many Members feel, as I do, quite let down by the consultation. I will not personalise the matter by referring to the Minister. It is a government responsibility, and this Government are now in power.
We need to bear some basic facts in mind. This is an NHS scandal. The Secretary of State, perhaps more than any other Secretary of State, has been keen to identify where things have gone wrong with hospitals, practitioners and events in the NHS, and to point the finger and say that what happened was not right. This is the clearest case of that, and it is the biggest scandal in the NHS. We are talking about innocent victims. Many of us—even if the Government do not admit it—believe that there has been negligence and there is culpability, but I think we all agree that there is a moral responsibility.
I hope that we all still believe in the welfare state that was set up after the second world war, and that we all think that the state should act as a safety net. The matter goes further than that, however; it is about state error. It is about the state making mistakes that it is bound to correct. The state has made a variety of mistakes—Equitable Life, flooding and many others—after which it has been able to dig into its pockets and find money because it believes that there is a compelling case for doing so. Perhaps a closer analogy is mesothelioma. Mesothelioma victims have not had the complete compensation that they need, but at least the responsibility to make provision for those people has been recognised, even if one cannot point the finger and say that it is anybody’s fault in particular.
I want to say that this has been a very long struggle. I have been engaged in it only since my constituency boundaries changed in 2010 and I found that I had some sufferers, victims of incidents of contaminated blood, in my constituency. Since then, I have been pretty active as a Member by taking part in meetings, debates, reviews and the all-party group. There have been some important interventions. I credit the Minister for Community and Social Care for the work he has tried to do, and the Prime Minister for the apology he made in relation to that. There have also been concessions, such as that the existing schemes are inadequate and badly run, and that there are too many of them.
We have asked for a full and final settlement, for the overall impact on victims to be assessed and for each victim and their families to be dealt with as individuals, so I do not think that we expected to be in the position we are today. It is a position in which the Haemophilia Society can write quite baldly that
“the majority of people currently receiving financial support will be worse off under the new scheme.”
How did we get into this situation?
If I and other Members feel let down, what do our constituents feel? What do people such as my constituent Andrew March feel? His whole life has been fundamentally altered by this. His health, his life expectancy, his earnings ability and his career, as well as aspirational things such as the ability to own his own home and to live a normal life—I thought the Government believed in them—are all out of his reach now. This is a fundamental change, but it has been going on not for years but for decades.
I would say to the Minister that the issue of reduced income must be looked at in full, whether that reduction is because of discretionary payments or other reasons, as must the overall impact on the individual and their family, and the implications, more widely than simply health, on their whole lifestyle. We should not confuse treatment, including the good and innovative schemes that are now available—anybody should receive such treatment from the NHS, to which we all pay in, as of right—with paying proper compensation and ensuring that people are properly rewarded.
Let me end by making two quick points. First, it has been said that Scotland has set an example. It is not a perfect example, but I strongly believe that we should at least be able to match what happens in Scotland. Secondly, my constituents have told me that they do not feel comfortable filling in responses to the consultation. They do not believe the consultation is presented clearly and honestly, and the questions are phrased so prescriptively that they are unable to communicate what they think. The Government can do what they want—it would have been better if they had withdrawn the consultation, but that has not happened—but they do have the power to respond by saying, “We have made a mistake. We haven’t taken into account everything that should be done. We have to act with compassion and with honesty, and we have to give proper compensation.”
Finally, I must say that I disagree, as I rarely do, with Bob Stewart. This is about justice, and justice can be delivered by recognising the needs of the community who have been infected in this way. I think that the Government have a duty to act.
I am very glad to be able to participate in this debate. I thank Diana Johnson for securing it. This is a very important debate.
I am slightly sad to have to say this, but it is a shame that the debate is happening at this time of day. I know that constituents of many MPs around the country have travelled a long way to come to Parliament today. Some of my constituents were in the Gallery earlier, having got up at 3 o’clock this morning to come down from Glasgow, but they have had to leave to fly back up and go back to work. [Interruption.] I appreciate that, as the Under-Secretary of State for Health, Jane Ellison, says, it was the Speaker’s decision. I am just reflecting on the fact that that is quite sad, and perhaps the procedures of the House should be looked at, particularly when already vulnerable constituents who do not have an awful lot of money have had to travel a great distance to hear what their MPs have to say. I went to join the lobby outside earlier this afternoon and spent a lot of time speaking to people, and their sense of frustration at having to wait so long for justice was compounded by their not being able to stay for the whole of this debate, after waiting for so long for a chance to come to the House to listen to us.
To move on to the more substantive issues, many of us are wearing ribbons given to us by the campaigners, so I will tell members of the public who may be watching at home what the ribbons mean. The red is for sufferers of HIV, the yellow is for people who have suffered from hep C, and the black is to remember those who have died waiting during this process. It is very profound to see the number of people who have lost their lives, over the piece, waiting for justice and for some answers.
The constituent of mine who was here today is Maria Armour. She contracted hep C in 1981 when she suffered a miscarriage in hospital and needed a blood transfusion. She did not find out that she had been infected until she turned about 35; she took ill and had to find out what was wrong. People did not know and could not tell her. She had to wait two years for a diagnosis, when she found out that she had hep C. The treatment that she began at that time further compounded her ill health. She now has fibromyalgia and lupus, and also has issues with her bowels. That causes her great distress. She cannot go out and her life is on hold.
Despite all that, Maria is a very inspiring individual. I spoke to her today. She continues to campaign. She, like many people, has dedicated her life to others, and now wants to be able to spend time with her family rather than having to continue to fight this fight. I asked her what she would like to be highlighted this afternoon in the brief time available to us. She said that she is looking for fair and equal treatment. She does not want to be a charity case—to have to go to funds such as the Caxton Foundation, or send them begging letters for very simple things that most of us would take for granted.
In particular, Maria mentioned that she was turning 50. She applied for funds for a dress to wear to her 50th birthday party, because, unlike many of us, she did not have the general funds to go out to the shop and buy herself a dress. She has to put in three quotes for that dress—they choose which dress she gets—and gets vouchers to pay for it. She mentioned that when, in the past, she has asked for furniture, she had to have vouchers, so she had to go to the shop to buy the furniture and count out all those vouchers in the shop, in front of people, to pay for it. That is very stigmatising. It is unfair that people have to do that, and do not get money, which the rest of us have to go and buy the things we need to make our lives easier. She has a lack of choices in her life. She cannot go on holiday with her grandchildren, as she would like to. She does not have the funds to do all the things she would like.
It would be easier for many people in Maria’s situation if they got the fair funding that they deserve. I am glad that the Scottish Government have recognised that funding should be available at a higher level. It has been said that it is a shame that constituents in England, and the few in Scotland who are affected, will not get that higher level, but that is not an unfairness on the part of the Scottish Government. They have recognised the issue, listened to people, consulted, and done a lot of work, and have decided what they think is fair. The ball is now in the UK Government’s court—they need to decide what is fair.
Some people have waited a long time—in the case raised by my hon. Friend Dr Monaghan, 42 years—since the initial infection. They need to have what is fair and what is due to them. They are not at fault here. We need to recognise that and find the funds to enable those people to live their lives with dignity as we wish to live our own lives. People should not in any case have to write begging letters to get what they need to live their life with dignity. I commend that point to the House.
As many Members have already identified, this scandal has affected thousands of people who were infected with hepatitis C and HIV through NHS blood products in the 1970s and 1980s. It has been described as
“the worst treatment disaster in the history of the NHS”, and was responsible for the deaths of thousands of haemophilia patients. It has, quite simply, been a nightmare for sufferers and their families. It is a nightmare that continues. It has taken away the careers, hopes, dreams and aspirations of thousands of people, including constituents of mine, just because they needed blood.
I thank my hon. Friend Diana Johnson and Jason McCartney, the co-chairs of the all-party group on haemophilia and contaminated blood. Their inquiry into current support for those affected by the contaminated blood scandal in the UK is a superb analysis. The current system for administering compensation is a nightmare and a scandal in itself. We are still in the absurd position of having five trusts, two private companies and three registered charities which give various kinds of assistance to the people affected. The people who should be helped most, the victims, are very far from happy with the present situation.
The all-party group’s report highlights that many beneficiaries are in poverty. At present, the widows and widowers of hepatitis C infectees receive no ongoing financial support whatever. The majority of people with hepatitis C—namely, those with chronic stage 1 hepatitis C—also receive no ongoing payments. People can apply for discretionary payments for all manner of items through the three charities, but, as has already been highlighted, many find the process of having to provide evidence of need for help deeply frustrating. They feel as though they are begging. Registrants report being left completely in the dark about what discretionary support is available to them. This has meant that some people have not received payments they were entitled to. Many more people with hepatitis C are aware of the trusts’ existence, with considerable issues of low take-up. Many people with hepatitis C are unable to obtain payments from their trusts because the NHS has lost their hospital records, or because the trust has denied they are at the sufficient stage of hepatitis C infection to warrant support, even though their own hepatologists have insisted that they are.
The report recommends that the Government second a public health doctor to the five trusts to ascertain the needs of beneficiaries and set Government funding at the level commensurate with need. This also means extending some form of ongoing payments to those with stage 1 hepatitis C and giving the widows of hepatitis C infectees entitlement to the same payments as those of HIV infectees. The trust system has to be reformed and nobody should be left in the dark: they should be told precisely what support is available to them. Those facing difficulties providing proof that they were infected should also be able to get help with their applications.
During the Westminster Hall debate on contaminated blood on
We wish to know how the Department of Health intends to distribute the £125 million. I appreciate that the consultation has not concluded yet, but a rough outline would be appreciated. Is it intended to end all discretionary or top-up payments to those who receive ongoing payments? Are there plans to allow special discretionary payments for dependants—either partners or children? Will there be a review mechanism regarding the freezing of the level of payments at £15,000, or will the sum remain at £15,000 regardless?
I commend my hon. Friend Diana Johnson for bringing forward this debate, along with the co-signatories. I was pleased to be one of them.
Today’s debate is the latest in a number of discussions we have held in the Chamber and Westminster Hall on the support arrangements required for people infected with contaminated blood. I pay tribute to the many advocates throughout the UK on the vexatious subject of tainted blood and to the Haemophilia Society. Norman Lamb said there was striking unanimity across the Chamber that this was not a party political issue but one that impacted on the lives of many people, not only the direct victims but the families, spouses, partners and children who, in many instances, have become carers. It has forced many people into poverty and destitution, which should never have been the case.
There has been a renewed urgency to this debate, particularly since last July’s urgent question, and in that regard I would like to put on the record my thanks to and praise for the work of the all-party group on haemophilia and contaminated blood. However, I would not overstate that urgency, given that publication of the consultation has been repeatedly delayed since its announcement last July and the Prime Minister’s apology on
Sadly, many have died from their viruses, and for others, every additional day they live is a bonus. This must be dealt with comprehensively once and for all. Let no one be in any doubt: there is no scope for delay. We have spoken at length in previous debates about the impact that the use of contaminated blood products imported back in the 1970s and 1980s has had on people’s lives. Lives have been devastated following the contraction of hepatitis C or HIV as a direct result of these contaminated products.
I have spoken before, in Westminster Hall, about one of my constituents, Brian Carberry, from my local town of Downpatrick. I grew up with him and his family. He and his brothers were born with haemophilia. He received blood transfusions in the 1970s and 1980s, and as a result, his health condition became particularly complicated and he ended up with hepatitis C. Only five or six months ago, he was diagnosed with a rare form of cancer for which he now receives an aggressive form of chemotherapy.
I have also met two other constituents, twin brothers, from South Down, Michael and Seamus Sloane, who have met many difficult health, financial and interpersonal relationship challenges as a result of their haemophilia combined with contaminated blood transfusions. Their lives have been turned upside down. In all our meetings, they asked for a full and final settlement for people like them. It struck me what amazing advocates they were: they took a very sunny approach, they saw a better day ahead. But that better day ahead can only be achieved if the Minister indicates unequivocally that there will be a full and final settlement for people like my constituents and the many others described in this debate.
I am sorry, but I cannot take any interventions because time is limited.
The health problems that thousands face as a result of this tragedy have been exacerbated by the distress and uncertainty around the support arrangements. Irrespective of how bad things have been, I would urge the Minister, having listened to the reasoned demands of Members of all parties, to state clearly that there will be a full and final settlement, that there will be proper transitional arrangements hereafter, and that people so affected will have the right and direct access to the medication required to help them live with their medical conditions, while the families affected by these problems will also be helped. The tragedy of this scandal must be ended and a curtain must be drawn on it.
Order. I think three minutes will suffice for Jim Shannon. The hon. Members for Central Ayrshire (Dr Whitford) and for Denton and Reddish (Andrew Gwynne) have still to contribute, and we must try now to get back in time. It falls to the hon. Member for Strangford to exercise Executive leadership in the matter.
Let me start by quoting:
“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”
Imagine going to a British hospital in a British city in the middle of one of the richest and most advanced countries in the world for an operation or procedure, and looking forward to getting home, but through no fault of your own, coming out infected with haemophilia or worse. We just cannot imagine what that must be like. For that reason, we must do everything we can to give people back their dignity, as one victim said to the all-party parliamentary group.
The current trusts and systems are not working as well as they could, and they are talking of doing away with aspects of the support for those affected. That is simply outrageous. Of course there are people affected by hepatitis who had nothing to do with the contaminated blood. I understand that we are talking about some 40,000 people across the country, and sadly there is an ever-growing number in Northern Ireland. Scotland has a strong track record through its “Sexual Health and Blood Borne Virus Framework”. It has set an example for the rest of the United Kingdom to follow.
Let me conclude quickly with these five points, because I am conscious of the timescale you have set me, Mr Speaker. The survivors are calling for a full public inquiry to be held under the Inquiries Act 2005 to investigate fully the events that led to thousands of British haemophiliacs and others with bleeding disorders becoming superinfected with a multitude of viruses and pathogens over many years. Full compensation for haemophiliacs and others with bleeding disorders and their families should be awarded in such a way that closure can be achieved for the majority of those infected and affected, including the widows and dependants of those who have died.
Norman Lamb made an important point about the families. He said we should not forget them, and we are all saying the same thing. We hope that the Minister will respond to that, and we want a full and comprehensive acknowledgement by the Prime Minister. He has apologised, but the apology has been lost in the delays that there have been. There are also lessons to be learned from what happened to the haemophiliacs, and measures should be put in place to protect the patients of the future. There have been missed warnings, failures to pass on test results to patients, procedural errors and non-consensual testing.
Let me conclude. Imagine being one of those innocent people, and imagine the difference that delivery on some of these aspects would make. As the testimony I quoted earlier said:
“You can’t give us back our health. But you can give us back our dignity. This tortured road has been too long for many of us. But for the rest of us, please let this be the final road to closure.”
On such a sensitive matter, we need to be able to give our full empathy and sympathy to those affected. I really believe that the Government need to deliver.
We have paid tribute to many of the people who have come from across the UK to listen to today’s debate, but there is one group missing: members of Haemophilia Scotland, who are in Tayside attending a funeral of one of their members, the second of three brothers who have haemophilia. The remaining brother has had a transplant because of liver damage. I expect that everyone here would want to send their condolences to the family.
Let us recall that this scandal has been going on for over 40 years. People have been dying without being recognised and without being looked after for all that time. It really is a disgrace. We talk about not accepting liability. I have my specs on because I want to read out some quotations, which, as Members know, I do not normally do. I have a letter here. According to a leading doctor in the Food and Drug Administration in America, in May 1985, heat treatment of blood products had been available for some time, but non-heat-treated blood could continue to be produced with the current licences because the FDA was not going to do anything about it. It could have regulated the practice out, but it wanted things to be tidied up quietly. The doctor explained that although the FDA could revoke the licences through regulatory process, it did not want any attention to be paid to the fact that the practice had been allowed to continue for so long; it wanted the issue to be
“quietly solved without alerting the Congress, the medical community and the public.”
I have a copy of a letter from John Major, the former Prime Minister, who was at the time Chief Secretary to the Treasury. In 1997, he wrote to Tony Newton, then a Health Minister, raising the possible consequences of a sympathetic response to the Haemophilia Society:
“It could lead to an open-ended commitment of huge dimensions and
“give rise to court action against the Government because of the implication of negligence”.
He asked Tony Newton to “consider the points” made by the society, but
“with no implication that the Government will take action.”
Here we are, nearly 30 years on, in almost exactly the same situation.
As has frequently been mentioned, this is the biggest treatment disaster in the NHS, and it happened because we were importing American coagulation products and American blood—blood taken from prisoners, or units of blood that were sold. Who sells their blood for donation? People living on the streets; people who are drug addicts. The main reason haemophiliacs and others are suffering is that making factor VIII meant using the blood products of multiple donors, which meant an increase in the risk of a positive result. Moreover, the haemophiliacs received those products over and over again.
Here we are, all these years on. When I graduated in 1982, and when I worked as a young surgeon throughout the 1980s, this was just beginning to emerge and be discovered. It certainly left me, as a surgeon, with an absolute fear of transfusing blood. I used to go to great lengths to use electrocautery and other techniques to avoid shedding blood in elective cases, because we did not know what other problems were there.
Some of my colleagues have drawn attention to the exact terms of the Scottish settlement, but the first three can be summarised thus. People who are suffering from hepatitis C, HIV or co-infection will receive more money, allowing them to receive at least the equivalent of an average income of £27,000. People with stage 1 hepatitis C will receive £50,000 instead of £20,000, and those who have received compensation of £20,000 in the past will be eligible for £30,000 now. It is totally accepted by the Scottish Government that focusing solely on cirrhosis is a rather bizarre way of assessing people, and they are entirely open to an evidence-based piece of work in the future looking into how people should really be assessed.
I think that one of the biggest differences in Scotland is the recognition of the bereaved families. They will receive the money for another year, and will then receive a lifelong pension of 75%. Our flexible fund will continue to be topped up to the point of £1 million a year. As has already been said, that will not give people back their lives, but it can allow them to live with dignity.
Mr Carmichael and Norman Lamb suggested, with a degree of criticism, that Scotland had gone ahead rather than seeking a United Kingdom solution. How long should we wait? Scotland was criticised because although we were ready to screen blood in 1990, we waited until 1991 so that there would be UK screening of blood donations. We made that mistake then, and we cannot make it again now.
I am sorry, but I do not have enough time.
I do not think that we would be debating this matter with the same urgency if there were not the contrast with what Scotland is doing. This is not just about financial support and recognition. All patients in Scotland with hepatitis C for whom Sofosbuvir is appropriate can receive it. I find it shocking that people in England who have been infected with contaminated blood should have to use any of their funding to buy a drug that can increase their quality of life and reduce the risk of giving the condition to their family. We are doing this not just for those patients but as a public health measure. If we reduce the burden of virus in the community, we will reduce the number of new cases.
A year ago, the Prime Minister and our First Minister responded to the Penrose inquiry. That inquiry was carried out in Scotland; the UK has never had a public inquiry on this matter. Both of them apologised, and our First Minister has used this first year to set up a group to look into changing support, and ensuring that people can access treatment and that families are recognised. I call on the Prime Minister to honour his apology and to ensure that patients in the rest of the UK receive the same treatment.
I start by paying tribute to the 21 hon. and right hon. Members who have today provided a strong voice for the victims of contaminated blood. In particular, I pay tribute to my hon. Friend Diana Johnson, who has been tireless in her pursuit of justice. I remember her forceful arguments when she asked an urgent question on the subject about a year ago, to which my right hon. Friend Andy Burnham responded on the Opposition’s behalf, and when she asked her urgent question in December, to which I responded for the Opposition. She does real credit to the cause of those who are suffering as a result of this scandal. We must never ever forget the personal tragedies behind scandals such as this one, and I want to pay tribute to the families who have travelled down here today to listen to the debate. They deserve their day in Parliament, and I hope that the Minister will carefully consider the points that have been raised by all Members and by the families of the victims.
I apologise for not being here throughout the debate; I was chairing a Committee elsewhere in the building. Would my hon. Friend accept that one of the defining characteristics of the modern world is that we have an expectation that an individual, a company or a Government will accept responsibility when things go wrong, and that they will accept the consequences of taking that responsibility? Does he agree that it is high time the Government accepted responsibility in this case?
I am grateful to my right hon. Friend for that intervention. He is absolutely right, and I will come on to that point later. We owe it to the victims and their families to find some kind of justice for them.
I am not frequently on the same side as the editorial line taken by the Sunday Express, but I congratulate that newspaper on its tireless campaign for justice. This scandal has seen families torn apart through death and illness caused by the negligence of public bodies. I am willing to accept that, over the years, the response of Governments of all colours has just not been good enough. When the consultation was published in January, I was clear that while no amount of money could ever make up for the impact that this tragedy has had on people’s lives, the victims deserved some form of justice. We have three days until the consultation closes and I want to use my remarks to push the Minister on four points relating to the current proposals.
First, in the 1970s and 1980s, around 7,500 people were infected with hepatitis C or HIV as a result of this scandal. Many of those people were being treated for haemophilia. The viruses have had a devastating impact on their lives and those of their families, not least through loss of earnings and the cost of treatment. The failure of successive Governments to accept liability for this issue means that many of the victims have lost financial security through no fault of their own.
I am afraid that I will not; I do not have enough time now.
The current system of support is only partial; it does not offer the full and final settlement that those affected and their families need in order to live with dignity. Indeed, it falls well below the level of support available in the Republic of Ireland.
We must be honest that the development of support, financial or otherwise, for the victims has been haphazard over the years, and support is always delivered too slowly. However, I remain concerned about aspects of the Government’s proposals. A number of those affected have made it clear to me that removing discretionary payments will make them worse off, potentially by thousands of pounds a year. It makes little sense to announce more funding for a reformed scheme only to remove the critical day-to-day support that so many people rely on. I wrote to the Minister a few weeks ago on that point, so she will know that this is a basic issue of fairness and openness. The victims of the contaminated blood scandal deserve better than this, so I will be grateful if the Minister confirms what is intended for the future of the payments.
Secondly, I welcome the introduction of support for people at stage 1, as so far they have been denied the annual payments to which they should be entitled, but I want to ensure that the impact that a person’s illness has had on other areas of their lives, such as employment or educational opportunities, will be taken into account. Many people have had their professional lives cut short or have missed out on higher education, so I hope that the impact on quality of life will be considered as a fundamental part of the settlement. Furthermore, an assessment every three years strikes me as excessive given that, generally speaking, these conditions will not improve. Many beneficiaries will be receiving either employment and support allowance or personal independence payments and will be regularly assessed for them, so it is unnecessary and punitive to impose a further layer of assessment on the victims. Why not have some form of joined-up approach with the Department for Work and Pensions to make life easier?
Thirdly, I am concerned about the plans to freeze the existing annual payments. Many victims of the scandal had promising careers cut short or were not given the chance to embark on one after being infected. They had that taken away from them in the most damaging of circumstances, and it is just plain wrong of the Government to fail to recognise the loss of standard of living, as well as the effects on health and longevity.
Finally, I want to mention the discrepancies between the responses of the Scottish and UK Governments. As we have heard, the Scottish Government will increase annual payments for those with HIV or the hepatitis C virus, increasing the initial lump sum from £20,000 to £50,000. Will the Minister elaborate on what alignment there might be with the English system?
I do not doubt the sincerity of the Prime Minister when he made a pre-election pledge to do more after the publication of the Penrose report, nor that of the Public Health Minister, who is doing her best with a constrained spending envelope, but I am sure that she will understand the real disappointment that people have been feeling. This drawn-out process has only exacerbated the despondency in the community. Will the Minister tell me when any new scheme will be implemented? The community of people affected need assurances that any improvements to the system will be introduced as soon as possible and sustained long beyond that. Will she commit to a debate in Government time to allow for appropriate scrutiny of the package? We should have a full day of discussions on the matter once the Government have responded to the consultation.
I am sure that the Public Health Minister appreciates that the longer this goes on, the longer we leave in place a system that does not work and leaves victims without adequate support. No amount of money will ever fully make up for what happened, but we owe to those still living with the consequences the dignity of a decent lasting settlement. It is time to act.
I thank the shadow Minister and Dr Whitford, the SNP spokeswoman, for granting me a little of their time to respond to many of the points made during this excellent debate. I congratulate members of the all-party parliamentary group on haemophilia and contaminated blood, in particular Diana Johnson, on securing the debate and on their campaigning work, to which tributes have rightly been paid. I also wish to thank those who have taken considerable time and trouble, and made considerable efforts, to travel down to London today to express their feelings to their Members of Parliament; some have been able to stay to listen to the debate. I am going to spend as much of my time as possible responding to as many of the factual questions I have been asked as I can, so let me move swiftly on to that.
The consultation on infected blood scheme reform seeks views on what a reformed scheme should look like. This is the first public consultation on this matter by a Government, although there have been other consultations led by parliamentarians. Obviously, it has attracted a lot of interest from Members, as indicated by the presence of those contributing today. I know that many Members, myself included, have had personal frustrations and concerns expressed to them over many years by constituents.
Members will appreciate that, as the consultation is still open, I am not in a position to give any commitments or guarantees on the shape of scheme reform today. Indeed, I want to reassure the House that no decisions on scheme reform will be made until the consultation has closed and all the responses have been carefully analysed. I have listened with keen interest to the various points that have been made and I will carefully consider the contents of this debate, alongside the responses to the consultation.
None the less, I am aware that there are some concerns—they have been expressed today—about the consultation and some of the proposals, and I will try to address those today. First, let me deal with any lack of clarity on the additional funding committed. To be clear, when I launched the consultation I announced £100 million of new funding for the scheme. That is in addition to the current spend of about £22 million per year and the £25 million announced by the Prime Minister in March 2015, so it will more than double our annual spend on the scheme in England over the next five years.
To date, we have spent more than £390 million on support for those affected, and the additional funds I have announced bring the budget for the next five years to £237 million. That means that, over the lifetime of the schemes, we project that more than £1 billion will be spent on support for those affected. The money comes from the Department of Health budget—I hear the points that have been made about where people think the money should come from, but that is where it is coming from and that is the funding we have been able to identify. We are more than doubling the budget for the next five years. This financial assistance is voluntarily provided by Government to help those infected and their dependants. I wish to ensure, and the key aim of the scheme is to ensure, that the money is distributed in a fair and equitable way within that budget envelope and within the legal framework within which I am working, in a way that is also sustainable for the future.
With that in mind, I want to emphasise to Members and to the House that this is a truly open consultation; I genuinely want to hear from all those who have been affected. It has been very useful for me to hear the points made in this debate. I want to hear what support would be most beneficial within the parameters I have set out.
To give some idea of how widely we reached to try to get responses to the consultation, I should say that letters have been sent to all 3,482 registrants of the existing schemes to make them aware of the consultation and provide them with details of how to access it. Letters were also sent to almost 180 Members who have at various times, by various means, contacted us on behalf of constituents over the past year or so, and they have been urged to respond, too. We have already received more than 1,200 responses to the consultation, and I hope that reassures some Members, including Andy Slaughter, who were worried that people might have found the consultation difficult to respond to. That is a very good level of response and it is enormously helpful. I am very pleased that so many people have taken the time to feed their views into the process. It might be helpful and, I hope, reassuring for Members to know that a specific team in the Department has been established to ensure that every response is read in full and captured in the analysis, and given that respectful hearing to which one Member referred.
It has been very valuable in the contributions to the consultation we have already received to hear from the quieter voices in the affected community that I have spoken of before. Indeed, I have been struck—in some ways shocked—by the number of affected individuals who were not aware of some of the support potentially available to them, such as the discretionary financial support and non-financial support provided by the three charitable scheme bodies. That has reinforced my sense, which I think is shared across the House—I say that especially in the light of today’s debate—that scheme reform is necessary, especially with a view to simplification and transparency. That point was put very ably by Liz McInnes. There are still a few days left in which to submit responses, and I encourage anyone who has not responded but would like to do so to respond before midnight on
Let me turn to some of the proposals in the consultation. I know that some of the charitable scheme bodies wrote to their beneficiaries to help clarify the consultation proposals, but some of the nuances were lost in the letters. A number of speakers, including my hon. Friend Mrs Murray, have reinforced that point. Let me confirm that the crux of the consultation is the proposal that every chronically infected individual would, for the first time, receive an annual payment under a reformed scheme. At the moment, those who are registered with the Skipton Fund at hepatitis C stage 1—that is 2,424 people, which is more than 70% of the total number of infected registrants—are not eligible for annual financial support. We are proposing a new annual payment for everyone in that group, reflective of the level of ill health they experience. Should the proposal be taken forward, we anticipate that a large proportion of the additional money committed will be used to provide these new payments.
The proposed reforms would continue annual payments to those who currently receive them, which is, approximately 840 people. Those who are currently registered with the Skipton Fund at hepatitis C stage 2, and those with HIV registered with MFET Ltd would have their payments increased to a rate of £15,000 annually, and those co-infected with HIV and hep C would benefit from an uplift to £30,000. That means that, over the next 10 years, someone with hepatitis C stage 2 would receive £150,000 in addition to any payments they have received to date. Someone co-infected would receive £300,000 in addition to the support they have already received. None of those payments is taxable, nor does it affect a person’s entitlement to any state benefits.
There has been mention of the link to the consumer prices index. I know that there is some concern about the proposal to remove the linkage to CPI. CPI linkage can result in an annual increase or, in theory at least, a decrease in payments. This year, CPI was negative, but we decided to freeze payments to ensure that support for infected individuals did not decrease as a result. Fixing the payments at a set rate would provide more financial certainty over this spending review period for those receiving annual payments. However, I will take very careful account of the concerns that have been raised in response to the consultation when making my final decision on this matter.
The Minister has explained that many people will benefit, but will there also be losers? If there are, will she write to confirm how much they will lose by and how many people will be involved?
I cannot give the right hon. Gentleman that clarity today, and there is a specific reason for that.
I will move on to discretionary support for infected individuals. Obviously, I have heard the concerns—I have had a number of letters and held a number of meetings. Some people came to the surgery that I organised. The hon. Member for Kingston upon Hull North was not able to make it, but other Members came and talked about this point. In the consultation, we did propose providing discretionary payments only for travel and accommodation costs. We addressed this issue because, prior to launching the consultation, one of the main criticisms of the current system raised by different groups of beneficiaries and their MPs and by the all-party group was that discretionary grants and the process of applying for them was “demeaning”.
However, I am aware that, through the consultation responses, a number of beneficiaries are troubled by the consultation question on discretionary payment, and those voices have been heard today. In principle, discretionary support should be means-tested, which means that it will vary with circumstances over time. However, it has become clear that, through the independent charitable schemes, a relatively small number of individuals are receiving regular and significant levels of discretionary—as opposed to regular—support. I encourage anyone who feels that they are in this position, or would lose out as a result of the consultation proposals on discretionary support, to reply to the consultation explaining that. No decisions have been made about some of the other discretionary elements on which Members have touched. I hope that clarifies the distinction between our assessment of the impact of annual payments and the impact of discretionary payments, some of which could not be known to us because they were put out through independent charitable schemes.
I welcome any suggestions that respondents may have in relation to the proposals and what would be of benefit to them. This, along with the rest of the consultation responses, will help us to decide what we might be able to do within the budget. We are well aware that some of the non-financial elements of support, which are currently provided by the charitable schemes, are valued. I want to reassure colleagues that we are entirely open-minded about this provision. As I have emphasised previously, it is up to people to tell us through the consultation what they most value in that non-financial support.
Let me touch on the Scottish reforms. Clearly, that has been quite a key theme today. I have been asked to consider matching the recent reforms. The Scottish Government established a financial review group, as we heard, and they announced their plans on
I am sorry. I have made a note in the margin of my speech to respond directly to the point made by the right hon. Gentleman, if I can get to it. I will try to deal with all the points that were made, and if I do not, I will write to Members after the debate.
The Scottish Government have chosen to provide a lump sum payment, and they currently have no proposals for annual payments to the hepatitis C stage 1 group. To give an idea of the difference, in England, over a five-year period, a stage 1 hep C sufferer who currently gets nothing but is awarded the highest proposed annual payment of £15,000 would receive £75,000. Officials from the Department of Health and the Scottish Government continue to exchange views on scheme reform, and we will reflect on the points that have been made today.
Let me touch briefly on the point about Wales and Northern Ireland. It is a matter for the Welsh and Northern Irish Governments to decide how support is provided for those infected in their areas, but they could opt to make the same reforms as the Department of Health and, indeed, participate in some administration arrangements following scheme reform. My officials hosted a meeting on
Let me touch on treatment. I understand the points that have been made. Since I launched the consultation in January, the NHS has committed to doubling the number of patients treated with new therapies to 10,000 in 2016-17. NHS England has allocated £190 million from its budgets for 2016-17 for rolling out treatment with these new therapies. I will take into account this significant recent development, along with the responses to the consultation, when making decisions on treatment and payment for it from the scheme’s allocated fund when the consultation has closed. I have noted the clear steers Members have given me about treatment being taken forward by the NHS. I emphasise, however, that legally, the NHS cannot prioritise patients according to route of infection, and can only do so according to clinical need, as Members will understand.
Turning to where we go next, the outcome of the consultation will be crucial in informing our final decisions on how to proceed. We will analyse and reflect on all the responses, and although the scheduling of a debate is not in my gift I will seek to provide an opportunity for colleagues to discuss the proposals with me before any final decisions are made. I will continue to keep Opposition Front-Bench teams closely informed, as I have sought to do throughout. I give the House, and those affected, my commitment that we will proceed as rapidly as possible to implementation. However, I recognise that any reforms must be implemented in a measured way, to give those affected time to adjust, and at the same time ensure that there is no disruption to the provision of ongoing support.
I said when announcing the consultation that my intention was that the new annual payments for the current stage 1 cohort should be backdated to April—this month—regardless of when an individual’s assessment took place. I stress that we are very keen that any assessment is simple and light touch. We do not anticipate any interaction with the benefits system, but I will raise with the Department for Work and Pensions the points made by Andrew Gwynne in his thoughtful contribution. We are aiming for simple, light-touch assessments every few years, and if someone’s health deteriorates we want to be able to respond appropriately.
I have tried to address some of the concerns, but I am conscious that I have not covered all of them. After the debate I will review them and respond if I can. I hope Sir Gerald Kaufman will appreciate that I am not able to answer the points that he raised before the end of the debate.
The consultation will be genuinely open and I urge everyone with an interest to respond. I hope to take matters forward in a constructive and open way.
The hon. Lady will have two minutes because I am here and I will insist on it.
I am grateful, Mr Speaker. We have had an excellent debate. We had more than 23 speakers in the three hours that we were allocated. I thank the Backbench Business Committee for giving us that time. I also thank the many people who travelled from all around the country for the debate to listen to what another Member referred to as the striking unanimity across the Chamber about the problems with the consultation proposals that have been put forward. My hon. Friend Conor McGinn phrased it well when he said, “Don’t tell us you’re sorry. Show us you’re sorry.” That was an excellent phrase.
“Nothing is ever settled until it is settled right.”
I thank the hon. Lady, who was commendably succinct.
Question put and agreed to.
That this House
recognises that the contaminated blood scandal was one of the biggest treatment disasters in the history of the NHS, which devastated thousands of lives;
notes that for those affected this tragedy continues to have a profound effect on their lives which has rarely been properly recognised;
welcomes the Government’s decision to conduct a consultation to reform support arrangements and to commit extra resources to support those affected;
further notes, however, that the current Government proposals will leave some people worse off and continue the situation where some of those affected receive no ongoing support;
and calls on the Government to take note of all the responses to the consultation and to heed the recommendations of the All Party Parliamentary Group on Haemophilia and Contaminated Blood’s Inquiry into the current support arrangements so as to ensure that no-one is worse off, left destitute or applying for individual payments as a result of the proposed changes and that everyone affected by the tragedy, including widows and dependents, receives support commensurate with the decades of suffering and loss of amenity they have experienced.