(9 years, 10 months ago)
Commons ChamberRead Hansard Text Read Debate Ministerial Extracts
Alistair Burt (North East Bedfordshire) (Con)
I beg to move,
That this House supports a further review of the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and 1980s; notes the recent report from the All Party Parliamentary Group on Haemophilia and Contaminated Blood into the support arrangements provided for those who contracted blood-borne viruses as a result; also notes that the Penrose Inquiry into these events will shortly be publishing its findings in Scotland; further notes that those who contracted viruses and their partners and dependants continue to be profoundly affected by what happened; therefore welcomes the Prime Minister’s commitment to look again at this issue; and calls on the Government to respond positively to the APPG report and engage actively with those affected with a view to seeking closure to these long standing events.
I will do my very best to stick to the rules, Mr Speaker, as I know other colleagues wish to speak. There is a lot to say and interventions matter, but I will do my level best. My first task is to express my thanks to a number of people. First, I thank members of the Backbench Business Committee for being good enough to allow this debate. Secondly, I thank the large number of colleagues who supported the calling of the debate: those who attended the Backbench Business Committee last week; the many others who have signed today’s motion; those who have been in contact with me; and those other colleagues closely involved. Thirdly, I give a big thanks to the all-party group on haemophilia and contaminated blood, particularly my hon. Friend the Member for Colne Valley (Jason McCartney) and the hon. Member for Kingston upon Hull North (Diana Johnson), not only for their support today, but for the immense amount of work they have put into this issue over a number of years.
Fourthly, I thank a small group of colleagues who have worked particularly closely with me: my right hon. Friend the Member for Cardiff Central (Jenny Willott); the hon. Member for Foyle (Mark Durkan); my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi), who has been immensely helpful through his company; and a number of others. May I also welcome the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) to her place on the Front Bench? She and I have had a number of conversations about this issue since she was appointed to her role and she has been concerned and engaged with it. We have worked with No 10 and the Prime Minister’s advisers directly, of which more later.
I am also acutely conscious that all of us follow in distinguished footsteps we alas hear no more, from Peter Archer or Alf Morris, or, most recently, our friends Jim Dobbin and Paul Goggins, who respectively chaired and led the last debate held in Westminster Hall in October 2013. Paul, who had supported his constituents over a 16-year period before his death, is a particularly hard act for any of us to follow. In this regard, Paul’s great friend the shadow Secretary of State for Health is here to speak for the Opposition, and that is particularly welcome and important, emphasising how personally many of us have become engaged with the issue and how it has become one where both the Government and the Opposition feel a collective burden of responsibility for the events of the past. I hope they share a similar determination to reach a more satisfactory conclusion.
Like almost any of us here today, I could fill most of the three hours allocated with ease, but that is not the way this debate must proceed. I will therefore briefly outline a history that we and those watching are wearily familiar with, and move on to discuss why the debate is taking place today, what our main issues are and what our hopes may be. I will, where possible, illustrate with some of the words of those who have been in contact with us, as this is a debate for them and for their voices.
First, let me read from the opening to Lord Archer’s report, just to set the scene. He said:
“Throughout the 1970s and the first half of the 1980s, many in the UK who suffered from haemophilia were treated with blood and blood products which carried what came to be known as Hepatitis C, and some 4,670 patients became infected. Between 1983 and the early 1990s some 1,200 patients were infected with HIV, also through blood products. These infections had caused at least 1,757 deaths in the haemophilia community by the time this Inquiry started in February 2007, and more have occurred subsequently.”
Those figures can, of course, be updated for current circumstances. He continued:
“By the mid 1970s it was known in medical and Government circles that blood products carried a danger of infection with Hepatitis and that commercially manufactured products from the USA were particularly suspect. By the mid-1980s there were warnings of a similar situation in respect of HIV. But the products continued to be imported and used, often with tragic consequences. The reasons for the chain of decisions that led to this situation, and the alternative options which might have given rise to a different outcome, have been debated since that time.”
Yes indeed they have.
Mrs Anne Main (St Albans) (Con)
It is fantastic that my right hon. Friend has brought this debate before the House, and I was pleased to support him at the Backbench Business Committee. Does he recall that when we made our presentation to the Committee its members were surprised that this was still going on, after such a long time? That is the crux of today’s debate: now is the time.
Alistair Burt
My hon. Friend is right about that. I will go on to say why this debate is happening today, and that is one of the reasons. This issue has not gone away, and even more colleagues are now aware of it.
Since the Archer report there has been some positive recognition by the state of its responsibility. Over the years, efforts have been made for financial provision, but a complex and incomplete patchwork has been the result. Some people have been left behind—those bereaved and dependants in particular. Treatments for the severest infections have improved markedly, which has, in general, of course, been good news, but they also bring their own ironic consequences in giving longer life to those with originally no expectation of it and not always a quality of life for which we would all hope.
Efforts by the state to redeem itself have been hampered by a chronic inability to admit the past, to ensure that all the material was available for public scrutiny, and to give an opportunity to family members to ask the question that any one of us would need to ask: why and how has my loved one died? Its evasion of a public inquiry, the loss of key papers, the slow drawing out of what paperwork there was, and the failure to submit to questioning have left a mark of suspicion that lasts to this day.
Before I turn to the why-now question, let me dwell a moment on the scale of this tragedy. One of the most moving speeches heard in this or any other Session of Parliament was when the hon. Member for Liverpool, Walton (Steve Rotheram) read out, unforgettably, the names of the Liverpool 96. He did so to let the world know that behind the tragic statistics that the 96 had become were people with names, lives and hopes. Consider this: for me to do the same would mean that I would be reading out nearly 1,800 names. We will hear some of their stories today, but I ask the House to reflect on the scale of this. In terms of death toll, this is the 15th biggest peacetime disaster in British history in which the black death, at 3.5 million, is the worst. The awful Aberfan, the name of which we all know, is but the 142nd, with 144 lives lost. Contaminated blood has killed 12 times more.
Jenny Willott (Cardiff Central) (LD)
Does my right hon. Friend share my concern that in cases where haemophilia is passed down through the generations, entire families have been affected by this terrible scandal? The Lewis family in my constituency is one such example. Hayden Lewis tragically passed away. His brother was also infected and has also since died. Hayden infected his wife Gaynor with HIV before he was diagnosed, which will have an impact down the generations. That is why these families deserve far, far better treatment than they have so far received.
Alistair Burt
My right hon. Friend has been a doughty campaigner on this issue, and I have been grateful to her for her support. Let me put some flesh on what she has just said and on those figures. I will start with Hayden. His wife wrote to a friend of mine and said:
“I would dearly like to see an end to the campaigning and put this issue to bed. There needs to be an apology, there needs to be a big overhaul of the various Trusts… definitely not to make you feel as though you are going ‘cap in hand’ to them. That’s disgraceful. I want to go to Hayden’s grave and say once and for all ‘it’s sorted.’ Then I will know he is resting in peace.”
Nadhim Zahawi (Stratford-on-Avon) (Con)
On the point about the support mechanism, does my right hon. Friend agree that it is unacceptable that the very organisations that were set up to support individuals, such as the MacFarlane Trust, do not treat beneficiaries equitably? My constituent who went to the trust and questioned the response times was branded a troublemaker and her applications for grants were either delayed or, in some cases, frustrated completely. That is the reality on the ground. Will he say something about some of those organisations?
Alistair Burt
My hon. Friend is right that many beneficiaries have expressed deep concern about the workings of the trust. The all-party group report that came out yesterday will be addressed by other colleagues. On the MacFarlane Trust in particular he should know that I share his concerns. I do not believe that that trust is salvageable or saveable, and I will speak about that later.
Albert Owen (Ynys Môn) (Lab)
The right hon. Gentleman read out a list of people to whom he wished to pay tribute. May I add his name to the list? I am here today because constituents came forward after he sent out the letter on behalf of the all-party group. I pay tribute to him for that. When we talk about trusts across the United Kingdom, I feel that, because this matter predates devolution, there needs to be a UK response so that the Welsh Assembly and devolved Governments are not bearing the brunt of the problem themselves. This is a UK problem, and the UK Government should look either to work with those Administrations or to take the lead.
Alistair Burt
There is no doubt that these matters predated devolution. As most colleagues are aware, there is a Scottish inquiry going on. Almost inevitably when it reports, it must report on things that pertain to the United Kingdom Government. I notice that the Secretary of State for Health has joined us, which illustrates the importance of this issue to all of us. He is enormously welcome, especially given the burdens that he carries. The UK dimension of this is indeed very real.
Alistair Burt
I will give way, but I hope that Mr Speaker will be understanding.
Alistair Burt
My latest understanding is that the Penrose inquiry has said that later this month it will announce when it will report so I think that by the end of January the leader of the inquiry will have announced when publication will take place. I will touch on that later; the non-reporting so far is one problem that we have had to deal with.
Let me give one further brief story as part of the background to the statistics. I have been privileged to work with one family where three brothers died. To give an indication of what that meant, the sister wrote to me:
“the story of my three brothers, all dead, as a direct result of the treatment given to them by the NHS. The impact on the family? A devastation that time has not and never will heal, owing to the lack of acknowledgement over these deaths by both the Government and the medical profession…Family life is never the same with any bereavement, and we can only cherish their memories and their offspring, but there are still so many un-answered questions as to the decisions made”.
Each of us has a number of stories that we could raise, and I apologise for not being able to read out more.
Why now? The answer is that there has been a lot going on in recent times. This Parliament began with the very first Back-Bench debate, initiated by the hon. Member for Coventry North West (Mr Robinson), who I am pleased to see in his place. I am sure that that helped lead to an announcement in January 2011 by the then Secretary of State of further changes to the funds providing payments, but underlying issues remained outstanding. We were all approached.
On 18 October 2013, I asked the Prime Minister a question on the issue. I will not repeat the detail, but it got a warm response from the Prime Minister who understood the problem and promised that he would put support into it, meet the gentleman that I wanted him to see, and take it up. To put this in historical context, the reason for approaching him was that the scale of the tragedy is certainly on a par with those issues for which the Prime Minister has apologised in this Parliament—Hillsborough and Bloody Sunday—having the bravery to recognise what had been done in the past, with the authority that only a Prime Minister could have.
We took the Prime Minister at his word. I was proud to take my friend, my constituent and his colleague to that meeting. We said we needed No. 10 to offer to work on what more might be done to close off the issue, and since then the Prime Minister has indeed put members of his policy team to work, together with my hon. Friend the Minister. I am grateful for the Prime Minister’s engagement and I am, of course, hopeful. I hope that my hon. Friend the Minister will say more about that work.
My question was followed up infinitely more powerfully by a debate on 29 October led by Paul Goggins, in which he outlined some of the issues that we agree are still to be settled. He spoke principally about the funds and people’s finances, the bureaucracy and inconsistency of the funds, the discrimination suffered by those who did not fit certain categories, the crude distinction between stage 1 and stage 2 hepatitis C sufferers, the inadequacy of funds for making discretionary payments, and the absence of transparency and accountability over the years. He suggested that if the Government were to continue to reject a public inquiry, there should be an alternative process, including:
“In addition to fair financial support, those who have suffered so much are still owed a full explanation and a sincere, profound apology.”—[Official Report, 29 October 2013; Vol. 569, c. 201WH.]
Hovering in the background of all our deliberations were a Government who were prepared to take on a public inquiry. In 2008, the then Health Minister for Scotland, now the First Minister, announced to her great credit the sort of judicial investigative inquiry on the transmission of infectious disease via transfusions in Scotland that has not been held for the UK as a whole. It covers effectively all the major issues dealt with by Archer, and will very likely have comments to make that will have a bearing on UK-wide policy. It may well have implications for financial considerations in respect of responsibility for what happens and what needs to be done.
As I told the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke), we do not yet have that report, but while MPs have waited for it we have not been idle. In April the all-party group and additional colleagues working with me, held two public meetings at Westminster. We wanted to keep the community informed of what was happening, discuss expectations and hear from them. As MPs attacked the issue yet again, we were asking the Government to focus on the key issues. Those meetings helped to reinforce our sense that we were talking about the right themes—the changes that life had brought for people who had not expected to live, and the financial considerations that that now brought them. There is the problem of leaving anything; the problem of mortgage and insurance; and the problem of the bereaved and the dependants, which we all know very well. They all have to be in the front of the Government’s mind as they approach this.
Mr Jim Cunningham (Coventry South) (Lab)
I thank the right hon. Gentleman for giving way and pay tribute to him for the tremendous amount of work he has done on the issue. It would be fair to say that since he has been involved there has been a degree of progress, although not total progress, because we will not have that until we get some action. Does he agree that many of the families feel very strongly about this and often feel frustrated by the lack of progress?
Alistair Burt
I am grateful to the hon. Gentleman for his kind remarks and I appreciate them very much. Yes, one thing we were told in our meetings in April was that people are sick of coming to Parliament. They have been coming for many years and many of them will feel that even today, but this is the best we can do as Members of Parliament. We know that those on both Front Benches are listening.
Zac Goldsmith (Richmond Park) (Con)
I must admit that this issue was not on the radar for me until recently, when I had a discussion with a constituent who was one of three siblings all of whom were contaminated as a consequence of this blunder. I want to put on record my gratitude for the work that my right hon. Friend has done and my support for this campaign. I wish him all the best and all my support as it progresses.
Alistair Burt
I am deeply grateful to my hon. Friend, but the gratitude should actually be given to the sufferers and their beneficiaries who have made an attempt to approach MPs, sometimes for the first time. This year, we were able to bring it home to people that despite all the privacy and other reservations they might have had—some have not been able to tell family or close friends what they have been suffering—there is a need to approach MPs such as my hon. Friend to make them aware of the issue. That has been a new element of the campaign and is another reason for this debate.
Mr Andy Slaughter (Hammersmith) (Lab)
I do not wish to embarrass the right hon. Gentleman, who has cross-party support on this issue, but I think that he is being very modest and that his intervention with the Prime Minister has helped to galvanise the position. Given that it now looks as though Penrose will not be published until late March, is there sufficient time to get that settlement before the general election campaign and the election itself?
Alistair Burt
Again, I am grateful to the hon. Gentleman for his kind remarks. I do not think there is time, because I think it is possible that Penrose will have such far-reaching implications that no Government could make sensible decisions on future financial considerations until it had reported. I hope that my hon. Friend the Minister might be able to say a little more today about what might be done outside the financial considerations. I think that a conclusive settlement cannot now be reached. Penrose was originally supposed to report in March last year, which would have given time. That was the timetable we were all hoping to work to, but needs must and we are where we are.
Jenny Willott
On the point that my right hon. Friend was just making about what could be done without any more money being made available in the interim, does he share my concerns about the process that people have to go through to access the support that is already available, how invasive and demeaning the processes often are and how much that upsets those who are already in a very difficult position, when they are simply trying to get what they should be getting anyway?
Alistair Burt
I thank my hon. Friend. The report by my hon. Friend the Member for Colne Valley and the hon. Member for Kingston upon Hull North, who I will call my hon. Friend for these purposes, covered those issues in some detail. I am sure that my hon. Friend the Member for Kingston upon Hull North will speak about some of the practical issues to do with financial provision.
Following the public meetings, we decided to take the opportunity to use new technology. Both the all-party group and my group of colleagues went out with surveys to as many people as we could find. I am deeply grateful for support given by YouGov and the personal support given by my hon. Friend the Member for Stratford-on-Avon, whose commitment and resource allowed us to do this job. It is a measure of the impact of this problem that about 1,000 people responded to our surveys, which is statistically way above the normal response to such surveys. We are profoundly grateful to those who responded so honestly and no doubt with much pain as they went over difficult and hurtful circumstances in an effort to inform us and the Government of what they had experienced. Key findings in our survey included the ideas that lump sums rather than ongoing payments might suit some sufferers better, that ongoing support for widowed partners and spouses was vital and that some form of inquiry was still relevant. All our findings have been reported to Government.
We then asked more people to contact their Members of Parliament, as my hon. Friend the Member for Richmond Park (Zac Goldsmith) has just mentioned. The number of colleagues now involved is well into three figures, and the number who have signed our motion can be seen on the Order Paper. I have colleagues who wanted to be here but could not—the hon. Member for Central Ayrshire (Mr Donohoe) and my hon. Friends the Members for West Worcestershire (Harriett Baldwin), for Ipswich (Ben Gummer) and for Erewash (Jessica Lee). I could go on about their stories for some time.
I do not expect the Minister to deal with the possibility of further financial relief today. I accept that the delay to Penrose means it is possible that it could report in such a way as to require some form of response from the Government that might have financial implications which it would be unwise to commit to now and have to revise again quite soon. However, I put it on record that I do not expect that closure can be effected without some further financial provision. There will always be inevitable arguments about money. The truth for a Government is always that at any one moment there is money and no money. When the banks needed to be bailed out, money was found. When we needed to compensate those who had lost their futures through Equitable Life, even if all the money could not be found, over £1 billion was found. If, God forbid, the country were to have a catastrophe tomorrow, we would find money. A catastrophe? Perhaps 1,800 dead is a catastrophe.
Sir Gerald Howarth (Aldershot) (Con)
Like other colleagues, I pay tribute to the work that my right hon. Friend has done on this. I do not have any constituents who are affected, but I have served in this House, along with him, since 1983, and I feel that this is business that neither the House nor successive Governments have properly resolved. Does he agree that as this blood was provided by the national health service—by the state—it is therefore the responsibility of the state to sort out the affliction that has affected these people over decades?
Alistair Burt
My hon. Friend puts it very well. He is yet another example of an MP who does not have a constituency interest but has recognised the responsibility that we all share, and the state shares, for what has happened.
Only this morning we saw in one of the newspapers that local authorities had spent £5 billion on consultants. As I say, at any one time a Government will have no money or can find money.
Mr Gordon Marsden (Blackpool South) (Lab)
I apologise for not having been here at the beginning of the right hon. Gentleman’s speech. I want to touch on his point about payments. My constituency has four times the national mortality rate from hepatitis C—of course, not all of it acquired from contaminated blood—and a number of constituents who are living with the condition have written to me about it over the years. The latest comments have been about getting a conclusion to this process as fast as possible. One of them says:
“Existing mechanisms should be disbanded and replaced as quickly as possible with a new improved arrangement for processing payments.”
Is that not a short-term consideration to go with the longer-term ones?
Alistair Burt
I personally think that it is. That process will be informed by what the all-party group has spoken of, and its members will speak today. I thank the hon. Gentleman for his intervention.
As I said to my hon. Friend the Member for Stratford-on-Avon, I am not sure that I fully share the conclusions of the all-party group’s report with regard to the MacFarlane Trust. There is a great deal of detail in the report. As I was not responsible for compiling it, I can be lavish in my praise of the effort that went into it. A lot of hard work was done by a lot of people connected with the offices of the hon. Member for Kingston upon Hull North and my hon. Friend the Member for Colne Valley, and I am grateful for that. On the basis of information contained in the report and other information that we have, I do not believe that the MacFarlane Trust is saveable or capable of reform. I and others have seen a copy of a letter to the Secretary of State from two former trustees that is quite damning of its leadership, and one from some 68 beneficiaries that is equally uncompromising.
It would be unfair to go into more detail now. It may be that the trust has an impossible role. However, there should be no doubt that a body set up to support beneficiaries and those who have been victims of what happened is anything other than on their side—not an arm of Government, nor seen to be, and prepared to take on the Government to argue for the funds it needs without fearing a conflict of interest. The Department of Health has contributed to the situation by structuring too cosy a relationship, possibly in its own interests, and that has to stop.
Caroline Dinenage (Gosport) (Con)
My right hon. Friend has worked very hard on this issue, as has the all-party group on haemophilia and contaminated blood. I attended a public meeting yesterday with survivors and their families, and there was a very strong feeling that they have just had enough. They have been through a series of betrayals and disappointments at the hands of those who were supposed to help them, including trusts, departments and the Government. Does my right hon. Friend agree that this is our last chance to get this right for those people who have to suffer so very much?
Alistair Burt
I thank my hon. Friend for her kind words, and I agree with her. I will come to the trust invested in us in a moment, but, given the effort that has been put in, the work being done by Members on both Front Benches and the acknowledgement that we all share this responsibility, perhaps there is a chance that we will get to where we want to be.
Mr Speaker has been very generous with time, so let me finish. Last week, on the day that we circulated information about today’s debate to the community, I received the following e-mail, which was addressed to all of us as MPs:
“Thank you for your continued persistence in this issue. I wish to continue to be informed of any developments but I am very bitter that my husband of 21 years who got Hep C as a child from being a Haemophiliac sadly lost his fight and passed away yesterday after years of suffering due to Hep C. He never had an apology for all the years of ill health, he was a fighter right up to the end but it was also a fight he should never have had to deal with. Again on behalf of my husband, my daughter and myself thank you for your continued support and I hope a speedy result is had for those who still continue to struggle with the physical and mental stress this situation has caused.”
Finally, a friend who was told as a child that he had HIV and hep C, and a life expectancy of four years if he was lucky, says:
“I find each and every day is like being on death row for a crime I didn’t commit. I long for the day that I can wake up in the morning and not have to fight the Gov’t for the right to have a better life. Imagine what it’s like to believe for years that what we have been given was an accident. The medical staff constantly told us ‘it was an unavoidable accident’ only for us to learn the truth for ourselves. Where did my human rights go at 12 years old. And WHY do I still not have any?
When you are stripped of your pride, your dignity, your finances, your job, career, your future, what do you have left? Your spirit and your fight, that’s what. Which is why we will be sitting there on Thursday and we will keep coming back until justice is done or the last one of us dies.”
As MPs, we have been privileged to be given the deepest, most personal details of these people and their loved ones. Some of us have been given family medical records, people’s deepest, darkest secrets and their hopes and fears. We have been privileged to have that. The words “devastation” and “struggle” appear far too often in the stories we deal with. We are not talking about a tiny handful of people, but about thousands who still feel wronged. As Members on both Front Benches prepare for an election, let us ensure that this Parliament as a whole remains committed to providing, finally, the best closure for those who trust us to do so.
Mr Speaker
Order. In order to try to accommodate everyone who wishes to contribute to this important debate, I have thought it necessary to impose, with immediate effect, a seven-minute limit on Back-Bench speeches. Such limit may have to be reviewed, probably downwards, in the course of the debate.
Diana Johnson (Kingston upon Hull North) (Lab)
May I start by thanking the right hon. Member for North East Bedfordshire (Alistair Burt) for securing this debate and for all his incredibly hard work over the past year or so in championing this cause? I also thank him for his kind remarks about the late Paul Goggins, the late Jim Dobbin and the late Lord Morris.
I co-chair, along with the hon. Member for Colne Valley (Jason McCartney), the all-party group on haemophilia and contaminated blood, and it has been a privilege to be involved in putting together the report. I think I speak for both of us when I say that many of the contributions made by the nearly 1,000 people who gave evidence to the APPG were harrowing and at times very moving. The substantive report would simply not have been possible without those submissions. They are quoted throughout the report and highlight in vivid detail how the current system of support is not fit for purpose. Our report is clear that there needs to be dramatic change to the level of support people get, and the way in which it is managed, before we can even hope to achieve closure for these people. Needless to say, my biggest thanks go out to the whole community of people who have been affected by this tragedy.
In addition, I thank YouGov and the hon. Member for Stratford-on-Avon (Nadhim Zahawi), who generously helped put together the survey; the Haemophilia Society, which provides the all-party group’s secretariat, and particularly its chief executive, Liz Carroll, without whose help we could not have conducted the inquiry or produced and printed the report; and Fiona McAndrew and Thomas Stephens, who both worked so hard to put the report together. I am also pleased that my right hon. Friend the Member for Leigh (Andy Burnham) is on the Labour Front Bench, and that the Secretary of State for Health and his Minister, who has direct responsibility for this area, are also present.
I want to highlight two matters. First, I want to clarify the issue about the number of people infected with hepatitis C. Since we concluded our inquiry, several people have got in touch about the figures. We state at the beginning of the report that, historically, it was estimated that more than 30,000 people were infected with the virus during the relevant period, and the figure was given in the Government’s 2011 review of support for those affected. Figures for the numbers affected by haemophilia derive from the United Kingdom Haemophilia Centre Doctors Organisation, and those for the number of people without bleeding disorders who are infected are estimates from an academic study.
I want to make it clear that no support package would extend to anywhere near such a number, because many of those originally infected have—unfortunately and sadly—died, while some cleared hepatitis C at the acute stage and others, especially those infected through a blood transfusion, would find it very difficult to link their hepatitis C infection with a single period of NHS treatment and so could never qualify for help in practice. It would be a shame if any Government used such a figure to argue that it is too costly to expand support. In practice, trust-based assistance would cover only a much smaller number of people—fewer than 6,000—and any consideration of the costs of extending the support package should take that into account.
Secondly, I want to highlight the case of my constituent Glenn Wilkinson, who was infected with hepatitis C from NHS-supplied blood products. Without Glenn, I would never have become involved in the all-party group. He is a resolute and determined activist, and he has campaigned vigorously for more support for those affected. We all owe him a huge debt of gratitude for keeping on going, and for fighting for what is right.
As a minimum, Glenn would like a number of measures taken to reach a full and final settlement for all. I will set out what he has told me in the past few days and how it fits with what we said in the report. First, he wants to remove the distinction between stage 1 and stage 2 hepatitis C, because the majority of people in stage 1 do not receive ongoing payments. The distinction is based on a decision that those in stage 1 are not in a state of ongoing need, but our inquiry clearly showed that they are in need. The accounts we received show that the Government need to rethink the current system, which denies ongoing support to those in stage 1. We therefore recommend that the Government provide ongoing payments to all people with stage 1 hepatitis C at a level to be set by a public health doctor.
Secondly, Glenn wants all widows and family members of deceased infectees to have equal access to financial support, irrespective of the infection that caused the virus. We recommend that all widows of hepatitis C infectees, who are currently denied any ongoing support, get the same support as those of HIV infectees. We also recommend that the families of deceased hepatitis C infectees should get the same support for at least nine months after the primary beneficiary dies, as is already the case for those with HIV. Thirdly, Glenn wants the support to be simplified and administered by just one trust, rather than by the five trusts that currently exist. Our report recommends that the Government review the support provided, because it is a mishmash and a hotch-potch.
Kerry McCarthy (Bristol East) (Lab)
I congratulate my hon. Friend and other Members involved in producing this excellent report. One of my constituents affected, Councillor Bill Payne, has praised the report. On her point about the piecemeal nature of the support available, I must say that I was really struck by that when I read the report. It is difficult enough to deal with the health care system and the welfare system without the additional burden of bureaucracy, and it seems that some of the organisations involved are not very good at responding to people’s needs, so I agree that that needs to be addressed urgently.
Diana Johnson
I am grateful for that intervention. I think I should be allocated an additional minute that has not been put on the clock. [Interruption.] Thank you, Madam Deputy Speaker.
Fourthly, Glenn told me that he thinks it would be fair to see priority access to NHS treatments for those affected, and that is rightly one of our recommendations. He also wants automatic passporting to employment and support allowance and disability benefits for all infectees. Because this is an all-party group, that recommendation is not included in the report, but I think it should be considered by the Government. Just today I received a message from someone who said that the money they get from one of the trusts is now being spent on paying the bedroom tax—I am sure the Minister does not think that that is what trust money should be used for. Once the Penrose inquiry is published, we hope there will be no further delays, or that any delays will be minimised in any inquiries that the Department of Health and Government need to make.
I will end with a quote from a person I think was very brave to come forward. She is an HIV infectee and the widow of an HIV-infected husband:
“I refuse to be a victim. Despite everything I cherish my life and count my blessings. I have faith that this will end soon and maybe then, my talents, intelligence, spirit, sense of justice, experience and energies can be better directed at contributing towards and being part of a better society. I pray for the day when this Trust is out of my life. I do not think that is much to ask.”
Jason McCartney (Colne Valley) (Con)
As co-sponsor of this important debate I thank the Backbench Business Committee for scheduling it. I also thank the Health Secretary and the shadow Health Secretary for their attendance in the Chamber, which shows the significance and importance of this issue.
One of my first speeches as MP for Colne Valley came on 14 October 2010 in a Backbench Business Committee debate on contaminated blood. Four years and a few months on, and we are still asking for a similar conclusion to this scandalous saga: for the Penrose inquiry to be published; for the trust offering financial assistance to operate in a fairer and more transparent way; and for a final settlement and an apology to the infected community from the Government of the day.
By 2010, 1,800 of the 4,800 people infected with hepatitis C had died, and of the 1,243 people who contracted HIV, only 345 remained. Today the number of survivors has fallen even further, and with each month of delay more of the infected community will not live to see any closure to this scandal. The date for the publication of the Penrose report will be announced shortly, and as it covers pre-devolution Scotland’s NHS treatment it will have implications across the United Kingdom. I implore the Government to respond positively to its findings.
My right hon. Friend the Member for North East Bedfordshire (Alistair Burt) has been working tirelessly with No. 10 on behalf of the infected constituents to try to get a final settlement, and I praise him for that work. As the motion suggests, I praise and welcome the Prime Minister’s commitment to look into this situation, which for too long has been ignored by Administrations.
As the Penrose inquiry is imminent and discussions on a final settlement are under way, the all-party group on haemophilia and contaminated blood, which I co-chair with the hon. Member for Kingston upon Hull North (Diana Johnson), set up a survey with the infected community to ask how it felt about current financial arrangements organised through the Skipton Fund, the MacFarlane and Eileen Trusts, and the Caxton Foundation. The survey received 961 responses, the majority of which were unhappy with current arrangements. I thank Tom Stephens, and my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi) for his co-operation, and of course Liz Carroll and the Haemophilia Society for their help in compiling this important report.
The human stories from the infected community are the most poignant, and the replies to the survey contained hundreds of pages of heartfelt responses from those who have faced hardship and tragedy due to their illnesses. A woman from my local area asked me to relay her story to the Health Minister. Melanie was infected when she was a child undergoing surgery. Her parents received the terrible news that she was HIV-positive when she was just eight years old. Now 36, Melanie has been unable to fulfil her aspiration of becoming a paediatric nurse or a play specialist. Instead, she must rely on Government support and assistance from the Eileen Trust. She wants what many in the infected community desire: closure to the contaminated blood scandal, so they can live the rest of their lives in dignity and without having to beg for each bit of support. It is her and others I am thinking of today.
Another constituent, who wished to remain anonymous, described the 30 years of hopelessness, pain and medication that followed his infection with HIV, hepatitis B and C, and blood containing variant CJD, when he was just 12 years old. Not only has that severely limited what he could achieve in adulthood in terms of a career and a family, but he describes the stigma surrounding the diseases and the fear of discovery by those ignorant of the circumstances involved in the initial infection. The all-party group’s report on the survey makes a number of recommendations to improve conditions. I hope the Health Minister will respond positively to them, so that we can move forward. That is very important.
Finally, while this Administration have been open to improving the situation for those infected with contaminated blood, what those people really need is a final resolution. The Prime Minister has shown great courage and great strength in apologising to the victims of Hillsborough and Bloody Sunday. He can now take the lead on this issue and apologise on behalf of the nation to those infected with contaminated blood. With the work of other Back-Bench Members, the publication of the all-party group report and imminent publication of the Penrose report, there will be no better time for the Government to commit to improving the conditions of those infected. We have waited long enough.
Madam Deputy Speaker (Dame Dawn Primarolo)
Order. Before I call any more speakers, it may not have escaped the notice of Members that there is a problem with the clocks in terms of each Member’s allotted time this afternoon. May I reassure Members that I will also be timing speeches to ensure that they have the correct amount of time and are not short-changed? I appreciate that seven minutes is a short period of time. If the clock indicates that you do not have any more time, I advise you to keep talking until I ask you to resume your seat. I understand entirely that this is not what normally happens, but I want to be fair to every Member. Hopefully, the fault will be corrected. None the less, Members should keep an eye on when they start speaking. Adding seven minutes to the clock is not really that challenging, I hope.
Jessica Morden (Newport East) (Lab)
I went to the launch of the report by the all-party group yesterday. On behalf of my constituents who are affected, may I say a very big thank you to hon. Members and former hon. Members who have pursued this issue over the years, in particular my hon. Friend the Member for Kingston upon Hull North (Diana Johnson) and the hon. Member for Colne Valley (Jason McCartney)? It is hard to believe that, after all these years, this is the first survey of those affected by this scandalous tragedy. I support wholeheartedly the efforts of the right hon. Member for North East Bedfordshire (Alistair Burt) to secure this debate and all the work he has done. Even though the Penrose report has been delayed, we cannot delay talking about this matter—it has taken far too long already.
I support the recommendations in the report that deal with the experiences that constituents such as Lynn Ashcroft have had. I spoke to her last night on the phone. She had been reading the report and described it as “very comprehensive and moving”. Lynn’s late husband, Bill Dumbelton, was a haemophiliac. Bill was one of the first haemophiliacs to treat himself at home with cryoprecipitate. He contracted HIV and hepatitis C from the blood he was given. He lost his job with BT in the 1980s after he told the occupational health department about his HIV status.
Sadly, Bill died at the age of 49 and Lynn was widowed at 35. Bill had no life cover. As Lynn explained, because of his haemophilia no one would insure “people like him”. As well as having to come to terms with the loss of her beloved husband, Lynn was left with the mortgage and other financial challenges. Lynn did receive money through the Skipton Fund, although she feels she had to jump through many hoops to get it. It took her two years to get to stage one, during which vital medical records were lost. In her words, the Skipton Fund process was “brutal”. Several appeals in three to four monthly intervals over two years made her grieve all over again. It took a huge toll on her personally. As Lynn says, the Government cannot bring back the dead or restore their health, but they can award a financial package that will ensure survivors and their families are financially secure for life. In her words, she wants to see no more charities, no more funds and no more begging. Lynn has been helping other widows to get through the overly complicated system. I hope that, as a consequence of the report, the Government will act on its recommendations.
Bill died in the same year as Colin Smith. Colin’s parents, Janet and Colin, live in my constituency. Colin’s tragic story is on the “Tainted Blood” website, as is Bill’s, and the story of his extremely short life illustrates why we need a public apology, which is long overdue. Colin went into hospital at eight months of age for a minor ear condition. As a haemophiliac, he received factor VIII, which the family learnt following a freedom of information request came from a batch from a prison in Arkansas. He spent his short life fighting illness. He died, aged seven, of AIDS and hepatitis C. The family did not know he had hepatitis C until three years after his death. That was kept secret, as so much has been kept hidden. It was a real battle to discover that.
On behalf of the family, may I say they are angry that there was never a public inquiry and that the full findings of Archer were not accepted? They passionately believe that more should be done to help those still living with the consequences of what Lord Winston described as the worst treatment disaster in the NHS. They have taken comfort in the friends they have made through the “Tainted Blood” campaign, but say they have not felt strong enough to attend the constant funerals, as their friends pass away. The Smith family and others need and deserve closure.
Two days ago, it was the 25th anniversary since Colin’s death. This was the tribute on the “Tainted Blood” Facebook page:
“Today marks the 25th anniversary of the death of Colin Smith. He was a haemophiliac, but despite that lived a normal fun-filled life, along with his two brothers and his mum and dad. Then, in the middle of the AIDS crisis, he was given a non-emergency operation, during which he was given a batch of blood product. Colin died of AIDS, aged seven, in Janet’s arms, weighing around the same as a baby. His family have never recovered from it, and never will.
Please, as you read tomorrow’s APPG report and as you watch the debate…remember Colin and all of those who, like him can’t be there with us. Please remember all of those who might not see the end of this year…Thousands of people, like Colin, simply didn’t make it this far. He never had the chance to join the cubs, play football for his school, have a girlfriend, go travelling or get married…Instead, his short life was filled with hospitals, doctors and illness. He was just a little boy, but a very special one who we, at TB, always keep in mind as we campaign.”
While long overdue, it is time for a public apology and a final settlement. Anything less will just continue to hurt the innocent victims and their families who, through absolutely no fault of their own, have had their lives torn apart by this national scandal.
Sir Oliver Heald (North East Hertfordshire) (Con)
The hon. Member for Newport East (Jessica Morden) has explained this tragedy extremely well. I first became aware of the issue in the early 2000s when I was a member of the all-party group on hepatitis C. I would like to pay tribute to the work of Jim Dobbin, whose memorial service it was yesterday. He was a great campaigner on a number of health issues and will be sadly missed.
I congratulate my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) on doing a wonderful job to secure the debate, and on working so hard on this issue. A constituent of mine recently told me that attending a meeting chaired by him in the House had left her more reassured than ever that he, and the group of MPs involved, would eventually obtain a decent settlement for all victims and their families.
I have a very old friend who has haemophilia. He has kept me informed on the issue over many years but is not very well these days. I would like to pay tribute to my constituent Mrs Ward. She campaigns on the issue on behalf of her family, who have been very badly affected by it. It is an issue of compassion; it is an issue for our generation; it is an injustice and a scar on the NHS. It has to be resolved.
We all feel for the people who are continuing to struggle with the aftermath of this decades-old mistake. The right hon. Member for Cardiff Central (Jenny Willott) made the point that this blight can run down the family for years. Obviously we understand the background of the original lack of understanding and the medical challenge to treat people with haemophilia, not knowing with security that the blood was safe. It is good that Governments have now recognised the extreme harm and the disaster that this was for victims, for which compensation was necessary. The arrangements put in place in 2011 were a major step forward.
I want to make three points. The first is that the APPG’s excellent report highlights the confusing system for compensation, with the five separate bodies all receiving Department for Health funding. There are two private companies and three registered charities; it is too opaque. I hope Ministers will see whether there is some way of improving the signposting to ensure that people can find their way through it.
The second point is that even if one understands the funding to which one is entitled, the process of claiming it is difficult, confusing and onerous.
Mark Tami (Alyn and Deeside) (Lab)
Does the hon. and learned Gentleman agree that people need help through the difficult and complex process to ensure they get the outcome they deserve?
Sir Oliver Heald
Yes, I do agree. The hon. Gentleman will know that there were people who underwent treatment for hepatitis C, but somehow the NHS has lost their records. That affects their applications. As the hon. Gentleman says, some way must be found to support people in this complex process.
One of my constituents tells me that new treatments for curing genotype 1 hepatitis C have been approved, but access seems to be granted only on “compassionate grounds”. Apparently, that excludes that constituent. She describes it as a “painful irony” that the problems that led to the NHS providing contaminated blood in the first place are now denying a survivor the appropriate treatment. I hope the Minister will look into this case, so that rather than having to prove compassionate grounds it can be dealt with as an entitlement.
The tragedy of this is deeply upsetting, and we must step up to tackle its legacy. The Penrose inquiry is expected to report soon, and its findings will, I am sure, be considered carefully by the Government. We are all pleased that these steps are being taken and that there has been progress, but this has not yet led to closure. That is necessary for the survivors, and it is necessary for the survivors and their families to have the support and dignity that they deserve. It is incumbent on our generation to sort this out, and this is the place to do it.
Graeme Morrice (Livingston) (Lab)
May I say from the outset how pleased I am that the right hon. Member for North East Bedfordshire (Alistair Burt) has secured a debate on an issue that has had profound and devastating consequences on the lives of at least two of my constituents and indeed thousands of individuals and families across the country?
I hope that through my contribution I will be able to give a voice to my constituents who have been affected by contaminated blood and who, up until now, have had no answers to what is considered to be one of the worst tragedies in modern health care. The experiences of my constituents echo many of the findings in the APPG report, particularly in terms of the inadequacy of the support available and the difficulties encountered when applying for entitlements from the Skipton Fund. I want to take this opportunity to praise the work of the APPG for haemophilia and contaminated blood.
I was deeply saddened to hear of the plight of two of my constituents who received contaminated blood during the 1980s.
Mr Tom Clarke
My hon. Friend will be aware that some of us who have sought for many years to get legislation through the House but have not yet achieved it feel that whoever wins the next election should make sure that time is available for this. Does he agree with that objective?
Graeme Morrice
Yes, I certainly concur with my right hon. Friend and commend him for his work in this field.
My constituent Mr Billy Cannon of West Calder suffered from a burst ulcer in 1986, which meant he required two blood transfusions. Mr Cannon was fine after the operation and recovered. However, it was not until August 2010, some 24 years later, when he was diagnosed with advanced liver cancer that he discovered he had hepatitis C. Sadly, after a brave battle, Billy Cannon, aged 57, passed away in February 2013. The loss of Billy, understandably, has been devastating for the Cannon family and I wish to take this opportunity to pass on my sincere condolences to Linda, Billy’s wife, who has shown great courage in the face of a very difficult set of circumstances.
It is the circumstances around Mr Cannon’s death that are so hard to accept because there have been no answers, no apology and no acknowledgement that mistakes were made that led to his untimely death. His wife recognises that apportioning blame will not bring back her beloved husband. Nevertheless, the death of Billy has had such profound consequences for many different aspects of her life and leaves so many questions unanswered.
Like Billy Cannon, another constituent, Vera Gaskin of Livingston, also contracted hepatitis C from contaminated blood. You, Madam Deputy Speaker, may recall that I raised her circumstances with the Prime Minister in the House a few years back. Mrs Gaskin received a blood transfusion during her treatment for cancer in 1985. Fortunately, Vera recovered from the cancer. However, later in 1996 when she began to feel unwell, it was revealed that she too had hepatitis C. Again, no explanation was given to Mrs Gaskin of how she had been infected with contaminated blood.
What is evident in the case of both of my constituents is the lack of information on the circumstances surrounding the passing of hepatitis C through contaminated blood. It is for this very reason that it is so important that there is a review of the events and decisions that led to the tragedy.
Luckily, Mrs Gaskin was in the early stages of the virus when she was first diagnosed and could therefore receive treatment. Nevertheless, living with hepatitis C has been particularly difficult for her and has impacted on all aspects of her life and that of her husband and family. The stigma alone of having hepatitis C has been mentally draining for Mrs Gaskin and her quality of life has been greatly reduced. The hepatitis C has denied her many opportunities and brought many difficulties.
What makes Vera Gaskin’s story even more upsetting is that she has not only had to come to terms with the devastation of her diagnosis, but has had to deal with an inadequate support system, further adding to her distress. Her view of the Skipton Fund, set up to help those affected by the tragedy, is:
“It is not fit for purpose, does not serve the victim and is causing more harm than good”.
I believe that this speaks volumes about the effectiveness of the support arrangements put in place following the tragedy.
I recognise that some improvements have been made to the support and compensation available to those affected, but changes are still clearly required in two areas: first, in the criteria used to determine entitlement for payment from the Skipton Fund, and, secondly, in the amount of financial support available. Despite having the medical proof that she had cirrhosis—the medical criteria required in order to receive further compensation—Mrs Gaskin was denied her stage 2 payment from the Skipton Fund.
She is not alone in encountering such difficulties. The APPG report revealed that 16% of all claims considered by Skipton have been deferred or rejected, many on the basis of insufficient proof. It was not until after a year-long battle that Mrs Gaskin’s application to receive her second stage payment was approved. What is evident from my constituent’s experience is that the criteria used by the Skipton Fund are too strict and only make it more difficult for victims to receive funds that they are perfectly entitled to. In response, I would urge the Government to take action to improve the system of allocating funds and to review the criteria, making it easier for those affected to provide proof.
The second important issue about the support arrangements is the amount of compensation available. Although no amount of money will be able to take away the pain experienced on a daily basis by those affected, it is clear that the amount of compensation available is simply not enough. Many individuals living with hep C continue to experience hardship and financial difficulties, despite the existence of Government-established funds, which is why I would urge the Government to reconsider the amount available with a view to increasing it so that individuals can maintain a good quality of life.
In conclusion, I am sure all Members would agree that what my constituents and others across the country went through is tragic and cannot be undone. That said, I am hopeful that a positive outcome can be reached in the form of a review of the circumstances and the support arrangements available—for the sake of those who are sadly no longer with us and for the sake of those who continue to suffer. The all-party group report makes some important recommendations, to which I hope the Government will respond carefully and positively. I strongly support the report’s recommendations, particularly the calls for a public apology from the Prime Minister on behalf of successive Governments. I hope that, following this debate and, most importantly, following the publication of the Penrose inquiry, some form of justice will be delivered for each and every individual and family across the country who continue to have to deal with the consequences of this awful tragedy.
Chloe Smith (Norwich North) (Con)
I have attended today’s debate for three reasons. First, I know of two constituents who have suffered from the contaminated blood scandal. Secondly, the Backbench Business Committee is doing good by returning to the subject of one of its earliest debates in 2010, so we can take this as a test of what sort of progress can and should be made during a Parliament. Thirdly and most seriously, I share the view of many in the Chamber that this issue is a national disgrace and a national tragedy. The victims have suffered long enough. I endorse the calls in the comprehensive inquiry by the APPG and I thank the various hon. Members who contributed to it. I also endorse its view that a public inquiry is necessary to establish culpability.
I shall use this time to tell the story of my constituents, and much of what I say will be direct quotations from them. They asked me to attend this debate, to speak for them and to support their interests. One in particular thanked me for such forms of support, saying:
“You have no idea how importantly we, in this contaminated blood community, who are very sick and ill, hold them.”
She wanted to make sure that we know that
“they are ill and exhausted and do not want to be constantly fighting and campaigning.”
Anne had an operation in 1974 that required three pints of blood. She knew by 2001 that she had been infected with hepatitis C, and she is now a stage 2 Skipton Fund recipient. She has suffered decompensated hepatitis C cirrhosis, end-stage liver disease, cancer, osteoporosis with weak teeth and a compression fracture of the spine, portal hypertension and oesophageal bleeding for which, she says,
“the procedures had recently are no cure, they simply stop the likelihood of my bleeding to death from the mouth and will return.”
She has splenomegaly, with her spleen twice the size it should be; in her words,
“it…‘eats’ platelets, red blood cells and immune giving chemicals.”
She has extreme fatigue and often describes her inability do anything more than be in bed all day, which is very hard when the treating hospital is several hours’ travel away. She has had four rounds of interferon injections—a drug that she says is “like chemo”—and pills that
“kill all your cells good and bad”.
Anne has most recently had a liver transplant, for which her consultant cheered her up with three things to worry about: No. 1, dying on the list to get the transplant; No. 2, not surviving the 10-hour operation; and No. 3, rejecting the new liver. She has had a drug regime that has helped to remove the virus. Indeed, when I spoke to her since the transplant, she sounded like a new woman, even when she almost cheerily told me:
“I still have cancer, but the Hep C has gone!”
Anne has been concerned about funeral payments so that her family do not need to worry. She explains the daily humiliation of waiting until last in a doctor’s or dentist’s surgery because she is infectious; she says she is being “treated like a leper”. She describes the
“stigma of cirrhosis and a disease associated with drugs”.
Anne would like priority support for survivors, although the majority will already be dead. In particular, she wants access to liver transplants and access to new drugs. She would like a national strategy for GPs to understand better the complexity of hepatitis C infection. She would also like better advocacy, because so many people affected are not in a position to speak for themselves.
Sir Peter Bottomley (Worthing West) (Con)
A point put to me is how infuriating and occasionally humiliating it is when, on meeting a new clinician, someone has to go through their whole life history, explaining that they do not drink too much and so forth. There should be some way of flagging up the fact that these people do not need to be asked ordinary clerking questions when their condition is perfectly plain.
Chloe Smith
I thank my hon. Friend for that point. It speaks directly about an issue I am coming on to. Anne has told me that she faced that problem, along with others such as getting a benefits processing centre to understand how the Skipton Fund works and the fact that she and others like her are fatally ill. She would like to see the “passporting” of prescriptions, which connects with what my hon. Friend just said.
My second constituent is a haemophiliac, and he was infected with hepatitis C in 1978 from an operation on arthritis. He realised the result in the 1990s. I am sorry to say that he had been part of Skipton stage 1 until last year, but he was then diagnosed with cirrhosis of the liver, which he had feared for many years. He, too, has been treated with interferon, a “truly awful drug”, and he is hoping for a new generation of drugs in a couple of years’ time.
My constituent has lived in fear of his disease worsening and of passing it on inadvertently to his wife and children. At first, he was told
“not to worry, as Hep C was like flu”.
He explained:
“Later they said that was wrong and it would probably kill him one day—unless…something else got him first.”
He told me:
“It’s funny how as you clock on a bit you get told you don’t need to worry as something else will kill you first. One does begin to fear this thing that’s going to get you first!”
He has been angered by the distinction drawn between stages 1 and 2 of hepatitis C in the lingo of the fund. The APPG’s report backs his view, and indeed my other constituent, Anne, agrees in the sense that many sufferers sadly progress from stage 1 to stage 2.
My second constituent would like three things: a full judicial inquiry; improved administration by the Skipton Fund; and better compensation, which he believes to be poor for the death and suffering caused in comparison with payments that other victims of other tragedies have received. He is hugely cynical that any Government will do something about this “hidden scandal”, which, as he calmly says,
“is a great pity for an awful lot of people.”
Let me come to my own views. I think the APPG’s report is a strong piece of work which holds many sensible recommendations that I would back. As I said, I would back the holding of a public inquiry, as this is one of the last remaining great scandals for which culpability ought to be clear, acknowledged and apologised for. I back the motion and pay tribute to my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) and all the others who have made today possible.
I add one comparison drawn from Anne’s comments, and this speaks to what my hon. Friend the Member for Worthing West (Sir Peter Bottomley) challenged me on.
Chloe Smith
Added, quite right.
We honour our military with a covenant. For the sacrifices they make for us— facing danger, injury and death—we give our respect, our support and fair treatment. We acknowledge a moral obligation. This Government should be congratulated on aiming to ensure that no disadvantage is suffered in gaining public services, and they acknowledge that there can be a case for special treatment in certain cases.
In no way do I try to cheapen either of those situations—the need for a military covenant or the needs of the people whom we are talking about today—but it is clear to me as a constituency MP that my constituent Anne seeks much the same as the sort of help that I have tried to get for veterans: doctors to act on the wider effects of their illness; getting the benefits system to see what they are suffering; and getting public services in general to join the dots of what they know.
I know it is controversial in the military covenant to emphasise preferential treatment, but in the case of Anne, who has wanted drugs and a new liver against the might of the NICE guidelines, when her appalling, sapping illness was no fault of her own, I think that she, too, and many like her, should receive respect, support and fair treatment. I see a moral obligation and every moral argument for doing as she asks. Perhaps the Government might consider having a covenant for contaminated blood.
Mr George Howarth (Knowsley) (Lab)
I congratulate the right hon. Member for North East Bedfordshire (Alistair Burt) on the typically thoughtful and sensitive way in which he introduced and framed the debate. I think we are all grateful to him for that. I also thank the all-party group, co-chaired by my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), for its important work and for what I consider to be a very important report.
Once in every generation, a handful of issues arise that I tend to describe as debts of honour. The right hon. Gentleman mentioned Hillsborough, I could mention the thalidomide scandal, and I am sure that other examples have already been given or will be given during the debate. I shall give two examples from my constituency, which, I think, underline the fact that this is a debt of honour that needs to be addressed.
My first example concerns a lady called Mrs Phoenix. In 1980, Mrs Phoenix had an operation on her jaw at Broadgreen hospital in Liverpool, during which she received contaminated blood. In 1995—15 years later—she was diagnosed with hepatitis C, after which she began a course of interferon that lasted for approximately a year. That failed to eradicate the virus. In 2003-04, she began a further course of interferon, and, thankfully, this time the virus was eradicated.
In subsequent years, Mrs Phoenix was told repeatedly that she was not entitled to claim compensation for the hepatitis C that she had contracted from contaminated blood, because the medical professionals had not been aware at the time that the disease was being transmitted from person to person through blood transfusions. In 2011 her solicitor told her about the Skipton Fund, but when she tried to complete the relevant forms in order to submit a claim to the fund, she was told that the details of her NHS operation had gone missing. That is a not unfamiliar story. Luckily, she was able to carry out the necessary research and appeal against the decision, and her appeal was successful.
This is what Mrs Phoenix has asked me to tell the House:
“As far back as the 1950s some US doctors were raising concerns about paid blood donations from so called ‘skid row’ donors. I feel health officials here cannot cloud the issue by claiming ignorance of risks buying in blood from the USA. Personally I do not want to rely on charity, I don’t want tweaks to the current system, I would like a full and final settlement. This has been called the worst treatment disaster in the NHS; warnings were ignored and I feel gross maladministration is to blame.”
Mrs Phoenix has made three requests. First, she wants the Department of Health to acknowledge that purchasing blood products from the United States, including blood products from inside the US prison system, without testing them was negligent. Secondly, she seeks what many others have called for—an apology—and thirdly, she seeks adequate financial compensation.
Mr Richard Bacon (South Norfolk) (Con)
I have listened to many of these stories with growing anger. Constituents of mine have also been affected. Does the right hon. Gentleman agree that Governments of both parties have failed our constituents for many years, and that the House will have no patience with any Government of any party who do not produce a final resolution of these matters?
Mark Durkan (Foyle) (SDLP)
The right hon. Gentleman has said that the risks must have been known. Is he aware that the move to set up a compensation scheme in the Irish Republic was made before full state liability was recognised? That liability was recognised only when a second inquiry showed that the state had known there was a risk, but had continued to use contaminated blood products on the basis that, because the United Kingdom and others were using them, it could carry the risk.
Mr Howarth
The hon. Gentleman has made an important point, which I fully accept.
My second example comes from a constituent who wishes to remain anonymous. Her husband, who was a haemophiliac, died at the age of 59 after contracting hepatitis A, B and C through contaminated blood administered in the late 1970s and early 1980s. As a result of receiving that contaminated blood, he had developed cirrhosis of the liver, oesophageal varices, ascites, encephalopathy and liver cancer. Understandably, my constituent says, his quality of life deteriorated year by year and month by month until his eventual and sad death. His haemophilia had prevented him from accessing insurance products such as mortgage protection, and the early retirement necessitated by his ill health had decimated his pension, which had left both him and his wife struggling financially.
My constituent had close family members who also died as a result of receiving contaminated blood. The family has been hit hard by a terrible scandal. Twenty years after the death of her husband, my constituent is still campaigning for justice. The family has been given no explanation of why the scandal was allowed to happen, and why the medical records went missing at local hospitals and in the NHS.
My constituent is now 76 years old, and is herself in ill health. She is looking for answers to a number of questions that are still arising, and she hopes to receive those answers in her lifetime and as soon as possible. The family sent me the following statement, which they asked me to read out:
“My family holds that what has long been needed is for this tragedy, which has already directly claimed the lives of 2,000 haemophiliacs”
to be addressed and put into perspective, in terms of its “scale” and in terms of “financial support”. The statement continues:
“We believe that this disaster…is finally seen as one event…the ‘UK Contaminated Blood Scandal’….the scandal is already Britain and Ireland’s 15th biggest peacetime disaster in terms of death toll, since records began, yet very few people know about it…the UK Contaminated Blood Scandal claimed the third biggest collective peacetime death toll in the UK in the 20th Century. My family believes that until this tragedy is finally seen in the proper terms of its fatalities, and is recorded as such…very few people outside of those whose lives have been obliterated will ever be able to grasp the enormity of a scandal”.
The family make two specific requests. First, they call for the current support groups to be disbanded and a new, comprehensive method of support to be introduced to replace the support schemes that are currently available, which they consider to be confusing and unfit for purpose. Secondly, they call for substantial, regular financial support that will meet the care needs of those affected.
I began my speech by saying that this was a debt of honour. I end it by saying that it is a debt of honour that should now be redeemed in full.
Sir Edward Leigh (Gainsborough) (Con)
I echo the right hon. Member for Knowsley (Mr Howarth) in describing this as a debt of honour. That, I think, sums up what the debate is all about. We caused this. We did not cause it personally, of course, but it was caused by the state and the national health service, so we are responsible.
I congratulate all Members who have spoken—particularly, of course, my right hon. Friend the Member for North East Bedfordshire (Alistair Burt), who has campaigned so effectively. I also pay tribute to my late friend Jim Dobbin. As has already been mentioned, his memorial service took place yesterday, and, in paying tribute to him, the Bishop of Southwark described him as an MP of causes. I know the House of Commons and politicians are often criticised, perhaps quite rightly, but I think this debate shows the House of Commons at its best. There are many MPs, like Jim, who do not necessarily see their political life as one of holding high office but who realise we are here to try to promote causes, particularly as, because of our constituency system, when we speak here we often do so because our constituents have approached us. In other political systems Members of national Parliaments are perhaps more remote.
One national politician who is not remote is the shadow Secretary of State, the right hon. Member for Leigh (Andy Burnham). We are all very grateful that he is here today given his other responsibilities, and I am working with him on another issue where people’s lives have been ruined through no fault of their own. We value his presence here today.
I have said that many of us are here today because of constituents, and I am here because of my constituent Gary Jones from Scotter, who has raised this issue with me several times. I want to share some of his thoughts with the House. First, however, may I make an apology: I am on the Panel of Chairs and quite soon I will have to go and chair a private Bill, so I may miss the winding-up speeches.
As I have said, I want to talk about the issues Gary Jones has raised and, in particular the Irish compensation scheme. Before doing so, however, I want to echo and emphasise what my hon. Friend the Member for Aldershot (Sir Gerald Howarth) said in an intervention as it makes the point very clearly. I have already said this once and I will say it again, and it will be said several times during this debate: let right be done.
We caused this, and we have to put it right. The state—or the establishment—is responsible. I do not know who is really responsible—probably no particular individual; no doubt everybody was trying their best—but there has been gross negligence over several decades, since perhaps as early as the 1940s when the viral risks associated with the blood products in question were known and patients were not informed. One of the greatest scandals in all this is that so many patients have been kept in the dark.
Richard Fuller (Bedford) (Con)
My hon. Friend said that this was an example of gross negligence by the state. In addition to what the Penrose inquiry will show that is specific to the contaminated blood issue, does he agree this is also an opportunity for us to set some guidelines and rules for those occasions when there are failures by the state health service on how it will deal with compensation so that we avoid a patchwork of problems similar to those that affected our constituents?
Sir Edward Leigh
I entirely agree, and I do not think this is just a question of money. If we attack the Government just in terms of money, we might not succeed in this campaign. It is also a question of learning lessons, and what the victims want above all is some sense of involvement in future schemes. We must learn lessons, and I am sure we are doing so.
The screening of blood donors was totally inadequate, allowing those with a history of jaundice to donate. Even in response to the rise of AIDS the Government failed to implement the best technology available at the time to render blood products safe. The results of this neglect have been appalling: the infection of over 5,000 haemophiliacs with hepatitis B and C, over 1,000 of whom were also infected with HIV from NHS blood products, resulting in 2,500 deaths. Although there has been compensation in many cases, it has been inadequate—indeed, they would claim it has been miserly. For instance, although there is a one-off payment available for hepatitis stage 1, there is no ongoing payment. All this is plainly unacceptable; I think everybody who has spoken agrees with that. It is also obvious that there must be a suitable scheme for compensation to the victims—not that any monetary amount can repair the damage that has been done.
The Irish scheme has perhaps not received as much attention as it should have done in this debate so far, and again I am quoting here from the arguments given to me by my constituent. It is not, as I am afraid some of my hon. and right hon. Friends on the Front Bench have suggested, that we want to link the UK compensation payment scheme to that which exists in Ireland. It is worth repeating that campaigners have never expressed a wish to place the Government’s funding of any compensation scheme in Irish hands. For myself, I do not suggest that the compensation should be exactly the same, but the Irish scheme is worth looking at in terms of compassion: it puts compassion first; it accepts liability; and it is substantial enough for the victims to gain closure. So I encourage Ministers to look further into the compensation scheme the Republic of Ireland has established and to see what lessons might be applicable to us here in the UK.
Jenny Willott
Does the hon. Gentleman agree that, because we are talking about quite a small number of people, fairly generous packages of compensation would be affordable? We are not looking at millions of people; we are looking at a small number of people who have suffered very seriously as a result of the NHS.
Sir Edward Leigh
Yes, I want to deal with that point, and I am glad that the hon. Lady has made that intervention. I can quite understand where the Government are coming from, but both my hon. Friend the Member for Aldershot and I—and others who have spoken—cannot ever be accused of wanting to waste public money. We are very aware of the pressures on Government. Again I am grateful to my constituent for some of the figures that have been given to me. He says—and I hope the Minister will reply to this point—that:
“The figures quoted in the Written Ministerial Statement are completely incorrect. The Government have refuted suggestions that they based their calculations on a typographical error in the Archer Report and claim that the costings were based on an average of £750,000 per person. The CEO of the Irish Haemophilia Society has confirmed that the average figures paid out in Ireland was ‘around €350,000’ per person.”
So the total figure we are talking about here is £1.5 billion. That is very similar to the compensation paid to the victims of Equitable Life. I have campaigned on Equitable Life, as we all have, and it is pretty awful for someone to lose their life savings and there was appalling suffering, but at the end of the day they have lost their savings; they have not lost their life. So if we are prepared to pay this sort of compensation to the victims of Equitable Life, why do we baulk at similar figures for those whose whole lives have been ruined, and ultimately many of them lost?
My hon. Friend the Member for Gosport (Caroline Dinenage) put it very well:
“I recently met a delegation of people who had suffered through the Equitable Life disaster. Although I have every sympathy with their plight, today’s debate puts that matter into perspective because we are talking not about the loss of life savings, but about the loss of life itself, loss of livelihood and of the chance to grow old, and losing the chance to become a parent and see one’s children grow up.”—[Official Report, 14 October 2010; Vol. 516, c. 556-7.]
I could not put it any better, and I end on the following point. We recognise that we are at fault. We recognise that these people’s lives have been ruined. We recognise that the current compensation scheme has not fulfilled their expectations and is not fair. Let right be done.
Mike Kane (Wythenshawe and Sale East) (Lab)
I stand in this House in the footsteps of giants. My predecessor Paul Goggins was a tireless campaigner on this issue, and his predecessor, Lord Morris of Manchester and former Member for Wythenshawe, was also a tireless campaigner on it, so I am humbled to stand before the House as their successor.
I pay tribute to the right hon. Member for North East Bedfordshire (Alistair Burt) for securing the debate and congratulate him on his work. There are days in this Chamber, particularly as we approach a general election with the cut and thrust of politics, when I do not know what we do here. Today is not one of those days. The hon. Member for Gainsborough (Sir Edward Leigh) summed it up correctly: this debate shows the House of Commons at its best.
I want to relate the tale of a few constituents of mine: Fred and Eleanor Bates and Peter Mossman. I have been working with them over the few months that I have been a Member of Parliament and we have had the full support of my right hon. Friend the Member for Leigh (Andy Burnham), for which we are grateful. Eleanor is now 60 years old. She has been married to Fred for 38 years. Fred is a haemophiliac who used to have a 5% clotting factor but now has a 0.0001% clotting factor. It is believed that this reduction is a result of the contamination. Before 1982-83, he received plasma and cryoprecipitate on demand when he had a bleed. After that, he was switched to factor VIII. In 1991, he was visited by another constituent of mine, Peter Mossman of the north-west group of the Haemophilia Society, who brought Fred a leaflet about hepatitis C. Fred visited the hospital to check this out and discovered that he did indeed have the condition. In fact, the hospital had known about his condition for almost a decade. Frightened and worried, Fred and Eleanor researched the main symptoms of hepatitis C: fatigue, sclerosis of the liver, liver cancer and ultimately death. They believe that the disease is now having an impact on Fred’s short-term memory function.
Fred worked as a weigher at C. H. Johnson on Bradnor road on the Sharston industrial estate in my constituency. In 1980, he was given a choice by his consultant: he could carry on working and face possible death within a year or retire and live longer. Fred was 31 years of age when he faced that choice. The choice was made more complicated by the fact that he and Eleanor were raising two small children. His income went from a respectable £145 a week to £45 in state benefit.
With hardly any clotting agent left, Fred now receives prophylactic treatment every other day, in the form of 1,500 units of factor VIII. It is not just the victims of this injustice that suffer; it is often their carers as well. Eleanor was unable to return to work after the kids fled the nest, because hepatitis C is an unpredictable disease. Fred can be fine at 8 am but have a bleed half an hour later and have to go back to bed. Eleanor has to dress his wounds, as well as doing the cooking and cleaning. She has felt unemployable for a numbers of years because of her home care duties.
Fred and Eleanor now have to deal with the Caxton Foundation. May I make this promise to the House? If I am ever fortunate enough to stand at either of those Dispatch Boxes, I will never hide behind the fact that we have set up a third-party organisation to pass the buck to. We should accept responsibility here in this House; this is where the buck should stop. Eleanor has described the Caxton Foundation to me as a sheer and utter waste of time; she feels as though she is begging when claiming. The system does not allow a retrospective claim. She put in for a respite holiday, but it did not come through, so she missed her holiday slot. Other issues have been identified. There are no separate forms for carers to apply for their own grants, and winter fuel payments are counted as income. The stress has ruined the lives of many carers of those who suffer from this condition.
I want to talk about some of the organisers. I mentioned Peter Mossman earlier. He is 71 years old, and he has a 5% clotting factor. He was a woodcutter, a machinist and a professional driver with Goodwin’s coaches in Manchester. Like Fred, he too faced the choice between giving up work and carrying on. He gave up work when he was 42. He has searched high and low for answers on the disease. His kids have only ever known him fighting. Working with Alf Morris, he set up the Manor House support group, and I pay tribute to him and Alf for that. He lost his sister, Margaret, recently. She was an affected carrier, and she died at the age of 63, her liver ravaged.
These campaigners believe that there should be no differentiation between stages 1 and 2 when it comes to payments. As has been mentioned, we are one of the few countries not to have adequately compensated the victims. There should be a decent one-off payment with subsequent annual payments.
Richard Fuller
A constituent of mine has also raised this point. Does the hon. Gentleman not find it odd that, as a result of this failure by the Government, the victims have to apply for a discretionary payment and that there is no substantial up-front payment? There seems to be a complete imbalance between right and wrong.
Mike Kane
I agree with the hon. Gentleman.
Many of the victims have lost the will to fight. There should be greater anger there, but they cannot deal with that anger and fight at the same time. Fred, Eleanor and Peter tell me that they will fight until they die. They have seen their stock of affected friends die horribly, and they feel that that is all they have to look forward to. They believe that it is time to admit that we made a mistake, and to allow those people to get on with their lives. Hope is real. There is no such thing as false hope. There might be false science, and there might have been false starts, but hope is real for those people. We in this Chamber today should help them to reignite that hope.
Mrs Anne Main (St Albans) (Con)
Today’s debate has been very well informed, and I pay tribute to my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) for bringing it to the House. This is about justice, and justice delayed is justice denied. Justice that has been delayed for such a long time is really no justice at all.
It has been noted that we are coming up to the general election, and I know that the NHS will be on the front of many of our leaflets. Our political literature will talk about the NHS and what it means to us and to our families, and about our hopes for it and the amount of money that we hope to spend on it. I do not want contaminated blood to be a subject of debate only for today.
This is about the trust that we and our families put in the NHS, but that trust was broken many years ago for many families, including one that I want to talk about today. It is important to recognise that we expect the NHS to give us the best medical treatment and advice available at the time. Many Members have pointed out that that advice was often ignored or pushed under the carpet; it was covered up even though it was known about. That is simply not good enough.
This tragedy has affected multiple members of many families. It has affected the quality of people’s lives and their aspirations over many years. People have described the situation to me as being forced by the state to join a club of whose existence they were unaware with rules that they did not understand, and being denied the ability to call it to account. People, including children, were unaware that they were being subjected—that is the right word—to treatment that was not in their best interests or appropriate for their condition. That failure by the state has been left to fester for too long, and it has left them with a legacy that is a disgrace and a stain on this House and on the NHS. Whoever is in the next Government, if they have used the term “NHS” on their leaflets, they must bear in mind that this debate today has joined the House in saying that we want better for those families.
I concur with what my right hon. Friend the Member for North East Bedfordshire said about reading out 1,800 names. In fact, we could read out the names of all the family members and carers involved. They are all victims; they have all lost a huge amount. We should not read out all those names, however, because many people do not want their names linked to the debate and made public. I am going to talk about my constituent, Nicola Enstone Jones. I asked her permission to use her name today, because I know that many people do not wish to have the stigma of being associated with all this, and with having to go cap in hand to get their rights recognised. I should like to give the House a flavour of some of the hardships that Nicola’s family have had to endure, and of the unfairness of a system that has no transparency.
Like many other Members, I have campaigned for Equitable Life victims. We have had many strong debates in the House about whether people’s estates should be included when the compensation payments were being made and about coming up with fair formulas. I have not heard the same zeal applied to this subject, although this is about people losing their lives, not their livelihoods. This is about people losing their hopes and dreams—just as the Equitable Life people did—but often losing them at a very young age.
I want to give Nicola’s story a brief airing today. It mirrors many of the stories that we have heard today, and it is important that we record as many of them as possible, because they show the unfairness, the anomalies and the degree to which families have to scrape to get a degree of justice. We have heard mention of very young children being affected, and Nicola was diagnosed with haemophilia at the age of seven or eight. In 1978 and 1979, she had tooth extractions—not exactly a hazardous thing—and treatment for a broken arm. In 1980, after a tonsillectomy, this young child was given factor VIII. It was by then known to be contaminated. Since that very day, her health has deteriorated, with symptoms associated with hepatitis C. Despite her mother’s concerns, she was told at the time that her daughter’s problems were psychological. Things were covered up. Throughout the years she continued to receive factor VIII for other operations and her health was always poor.
Over the years Nicola has lobbied me, as other hon. Members have been lobbied. When the Skipton Fund was announced, she was told that she could apply, but because in 1997 a consultant had stated that the virus had cleared, 17 years after she had been infected, she suddenly did not seem to meet the criteria. She has been turned down “on the balance of probabilities” by the Skipton Fund because her condition had been cleared for six months. Her mother, Mrs Enstone Jones, lived with that all those years, but because of a brief period when the virus was thought to have cleared, Nicola did not meet the criteria. She has been let down by the Skipton fund.
The report which has been mentioned so many times in the Chamber today stressed that the fund—the “third arm”, as I think it was called by the hon. Member for Wythenshawe and Sale East (Mike Kane), whose predecessor, Paul Goggins, worked tirelessly on the issue—is creating a barrier to justice, not facilitating justice. We must have a better system so that people do not feel that they have to jump through hoops, justify themselves, or make early applications in order to be able to go on holiday or get essential funding. The funds set up to deal with the issue are not dealing with it and, if anything, are trying to avoid dealing with it if they can and keep money back.
We do not wish to save the state money because, as the right hon. Member for Cardiff Central (Jenny Willott) said, we are speaking about a relatively small number of people. Let us get the matter sorted. Let us put in place a fair system. Let us make sure that all the other Enstone Joneses and all the other names that we cannot mention today for reasons of privacy do not feel that they have somebody acting against them, instead of acting for them. If nothing else comes of the debate in the House today, we should remember not just the NHS, but what the NHS means to those affected and their families. They trusted their health to the NHS many years ago, and the issue is as relevant today as it was then. Any of us who campaigns on the NHS in a few months’ time should remember that and pledge to do something about it if they are part of the next Government.
Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)
I apologise for my cold, but I promised my constituent, John Prior from Moodiesburn, this morning that I would seek to put on record a very controversial letter—some would say a lengthy letter—which he sent to me and which I thought I should share with the House.
Before doing that, I congratulate the all-party group on its comprehensive report and the right hon. Member for North East Bedfordshire (Alistair Burt) on the way in which he introduced the debate and on the work that he is doing. I welcome the other speeches that we have heard, including the one from my hon. Friend the Member for Kingston upon Hull North (Diana Johnson).
I turn to the letter from my constituent, a voice that I think should be heard. John Prior said this:
“I was told aged 20 in 1994 that I had chronic hepatitis C by my haemophilia consultant at the Glasgow Royal Infirmary. I had been given contaminated blood as a child at Yorkhill children’s hospital in Glasgow.
The blood was donated from pooled donations of thousands of donors including prisoners in US jails. The haemophilia doctor told me I would eventually need a liver transplant but did not know when. He said it could be 3 months, 3 years or 30 years. I was in complete shock, myself and my family thought I had AIDS. It’s been like living on death row not knowing when I would need a liver transplant.
To my horror, my GP wrote to my employer and told them I had hepatitis C and did not expect me to work for more than 7 years due to my infection. The letter was dated one year before I was told I had hepatitis C, so my work knew about my infection before myself.
As an adult I kept my hepatitis C status to myself and close friends and family. I never told my colleagues. I only told one of my bosses as I was struggling in work, I couldn’t concentrate and kept nodding off at my desk. He’s been very supportive and lets me do menial jobs that don’t require much thought. My sick record at work is horrendous and I’m lucky to still have a job.
Relationships were virtually impossible for me as I felt worthless and frightened I would infect someone. I could not get a mortgage, and life insurance and travel insurance are prohibitive.
My treatment at one stage was 20 tablets a day and 2 injections a week into my stomach which I did myself for 6 months. It was a horrific experience and I felt I just wanted to die. At one point the nurse took blood from me for part of a study into why people with hepatitis C are dying at different rates. She told me she was surprised I was not taking anti-depressants.
My liver consultant applied to Skipton for the stage 2 payment but my application was rejected because I had not reached the ‘crisis’ point. How can a charity ignore the recommendations of a liver consultant? My experience with Caxton was just as bad. It would take numerous emails and phone calls to get in contact with them. I felt like I was begging the way, they treated me, they insisted I provide a letter from my consultant to confirm I was on treatment. It was I who had to run around seriously ill arranging everything for Caxton. I will never contact Caxton again. These charities are not fit for purpose”.
My constituent goes on to make other comments which I think it best not to repeat. His letter goes on to say:
“Over 80% of victims do not receive any ongoing financial help from Skipton yet we are ill.”
He concludes:
“After all that’s happened to myself I will have to be reassessed by the DWP for my entitlement to DLA which I use for my Motability car. I was originally awarded DLA for life 24 years ago. I am worried sick that I will lose my car as I need it to get me to work/hospital appointments. Does my Government expect me to take infected dirty syringes onto a bus? My health will only deteriorate. There is no cure for severe haemophilia. Government policy gave me hepatitis C yet they want to reassess me for DLA.”
That took some time, but I do not apologise. It is right that people who have had such experience should have their voices heard.
I referred earlier to legislation. So complex are the issues and so long have they gone on that legislation is necessary. I attempted to carry through this House the Alf Morris Bill which had made its way through the House of Lords. Unfortunately, we ran out of time. In March last year I succeeded in introducing a ten-minute rule Bill, which went a little further than the report. For example, it included the need for an NHS compensation card, which would lead to priority treatment. Following that, I had a meeting with the then Leader of the House, where it was made clear to me that time would not be made available. I am not sure that he shared the sense of urgency that I tried to impart.
I believe profoundly that an apology, important though it is, is not enough. Compensation is appropriate. There ought to be closer working between the DWP and the NHS. We have many lessons to learn from Ireland and elsewhere. I acknowledge those who have worked so very hard on this issue, especially Lord Morris, whom we remember with great affection today. We owe it to them to deliver.
Fiona Bruce (Congleton) (Con)
In supporting this motion, I congratulate my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) on securing this important debate. I praise him and the all-party group on haemophilia and contaminated blood for leading their campaigns to ensure that those infected by contaminated blood in the 1970s and 1980s, and their families, receive the support and justice they deserve. It is justice for which they have waited far too long. We often hear in this House the statement, “Justice delayed is justice denied”, but it is rarely so apt as in this case.
Like many Members here today, I was first alerted to this terrible situation by a constituent. My constituent’s father had been jointly infected by hepatitis C and HIV via contaminated blood products. My constituent told me:
“My father lost his battle with these joint diseases on the 17 January 2000, after 19 years of suffering…His story is a long one with distressing details.”
I do not propose to go into those details, but I will say that it is a heartbreaking, twisted tragedy that my constituent’s father could go to hospital to receive treatment to help with haemophilia and yet it would be that very treatment that would kill him, having caused him 19 years of suffering. It is a tragedy for that man and for his whole family, one similarly suffered by nearly 5,000 people in 5,000 families, so many of them going to our own national health service hospitals to be treated but receiving what would turn out to be lethal injections.
If proper support and a proper inquiry had been provided in 2000, it would, even then, have been tragically too late for my constituent’s father. This Saturday will mark 15 years since he passed away, and here we are still—in 2015—with no proper inquiry, unsatisfactory support for survivors, unsatisfactory support for families, inadequate compensation provision and, not least, no apology. Not only is this tragedy heartbreaking, but it is a double tragedy and a double scandal. The first is that anyone—let alone 5,000 people—was infected through contaminated blood. The second is that decades later— 24 years after my constituent’s father was contaminated and 15 years after his death—we find that my constituent and his family, and so many others like them, still have received no satisfactory response or justice. That must change. It is nothing less than appalling that successive Governments have failed to address this issue: a situation caused by a failure in our NHS provision.
My constituent’s letter continued by saying that
“it is the survivors and the widows who most need help now, and those who have died need a voice. The largest tragedy of this is that unlike other countries, there has never been a public inquiry.”
As a member of the Select Committee on International Development, it is my privilege to travel the world, and wherever I go I hear people admiring the high standards of our country’s justice system, rule of law and provision of access to justice. This country is respected globally for those things, yet it is a terrible stain on our reputation, of which we should feel ashamed and embarrassed, that we have failed as a nation, by such a long way and over such a long time, to adhere to those high standards of justice expected by our constituents, and which they deserve.
What now needs to be done is clear, thanks to the work of my right hon. Friend the Member for North East Bedfordshire and the all-party group, who have identified the main priorities of those who suffered from these situations and their relatives. The priorities are reasonable, just, possible, necessary and, above all, urgent, because, as we have been reminded today, justice delayed is justice denied—indeed, it is no justice at all. Let us hope that today’s debate signals the beginning of the end of this terrible scandal. In closing, may I apologise for the fact that I may miss the wind-ups, because I am shortly hoping to speak in another debate?
Mr Geoffrey Robinson (Coventry North West) (Lab)
Like other Members, it is appropriate that I should pay tribute to the right hon. Member for North East Bedfordshire (Alistair Burt) and the hon. Member for Colne Valley (Jason McCartney), who secured today’s debate, and, most of all, to my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), who has been responsible for getting the all-party group report out earlier this month. While we support and congratulate each other, we have to remember that the real victims in all this are those who have been infected and suffered this terrible disaster and tragedy, which has now been with us for more than 30 years. It is unique in one way, in that it is, alone in the health field, the fault of successive Governments. In no sense is this a party political debate, and the tone of today’s debate is a great credit to the Members who have taken part. It shows the growing awareness throughout the House and, I hope the civil service, too, of the seriousness of what took place all those years ago and the extent of our maladministration—let me put no finer point on it—in the handling of it since then.
The wide geographical spread of constituencies represented today is a testimony to the impact that this issue has had throughout the country. It has been pleasing to see two new Labour Members, my hon. Friends the Members for Wythenshawe and Sale East (Mike Kane) and for Heywood and Middleton (Liz McInnes), who have clearly taken on the role of successor MPs in the campaigning sense to their predecessors. My hon. Friend the Member for Wythenshawe and Sale East has already spoken to great effect, and he follows in the footsteps of Lord Morris and Paul Goggins, both of whom campaigned with us very effectively. Sadly, however, we have not really been successful yet. One point I wish to make to the new Members in the House is that they should not think we are starting all over again, because we are really at the end of this campaign now and they will, I hope, see the—I was going to say fruits, but there are none to reap here—thing brought to some sort of satisfactory conclusion, after all this time.
Liz McInnes (Heywood and Middleton) (Lab)
I thank my hon. Friend for his kind comments and I wish to pay tribute to the tireless work of the late Jim Dobbin on this campaign. Let me add that I have been contacted by two constituents who praised the work that Jim had done and asked me specifically to attend this debate. They do not want their names to be made public, but they wanted me to be here and to take in what was said, and I will be meeting my constituents afterwards.
Mr Robinson
I am grateful for that intervention. I was about to discuss Jim Dobbin, so my hon. Friend fortunately anticipates me. Jim was a good friend of mine for many years, and we had his memorial service yesterday, as she will know. He, alongside Peter Archer, Alf Morris and Paul Goggins, as well as others from the Government side of the House, was one of a series of outstanding campaigners that we have had on this issue. The fact that it is an all-party campaign enables us to get together to seek some resolution. This has been going on for an awfully long time and it has been very unsatisfactory, under all Governments. I must emphasise that all Governments are equally to blame, Labour and Tory Governments going back even to before Margaret Thatcher—I mention a name that will immediately resonate on both sides of the House.
As has been said, some of those who have been terribly affected have not wanted their names to be mentioned. Among those affected has been one of my constituents, Mr Joseph Peaty, whom I visited in his home only a few weeks ago. I believe he is here watching today’s debate and I would like to read to the House two brief extracts from his most recent letter to me. I am pleased to say that he is now the chairman of the Tainted Blood group, one of the campaigning groups that have been very effective on this matter. He wrote to me just reviewing the 30 years he has been infected. The House will be interested to know that he is now 49 years old and was first infected when he was 16. He has lived all his life in my Coventry constituency. He wrote to me recently—I got the letter only yesterday—to say the following:
“I miss being able to contribute to a productive career...Perhaps because of my age when I was first affected, my hopes and expectations, that were much like anyone else’s (education, home, partner, children, career, travel, ‘make a difference to the world’) were taken from me. I am now just a shadow of the potential I once held, struggling to exist let alone live a purposeful, fulfilling life, worrying what the next viral complication will be.”
In his case there is a shadow overhanging him, after all these tragedies, and after the terrible suffering, pain and treatments that have had to be gone through; he faces the prospect, having been infected by both Hepatitis C and HIV and undergone all the treatments, that he could now have to deal with some transmutation into CJD—mad cow disease. We just do not know. It is as bad as that.
The tone of Joseph Peaty’s letter is much better than these extracts perhaps reveal. There is nothing self-pitying about Joseph Peaty. He is in every sense a man of immense dignity and tremendous forbearance in the face of suffering that was inflicted on him by the very organisation that was meant to be treating his ill health. He writes:
“By supporting the haemophilia community in the pursuit of justice and financial recompense, I have learnt far more about the background to the introduction of pooled blood products than we were ever told prior to their administration. As a result I find the evidence overwhelming that the governments of the day knew of the infection risks, did not take adequate steps to mitigate onward transmission, failed to prevent non-consensual testing on patients, failed to inform patients of the risk, and put costs ahead of patient safety. The government were responsible for ensuring the safety of their citizens and failed disastrously in this primary duty.”
That is a terrible indictment, but it is true; it is factual, undeniable and incontestable in every respect. Joseph is referring to the entirety of his adult career since he was 16 years old. He lived in Coventry and that is the sum total of what he can point to in his life.
I do not wish to strike a discordant note when I mildly disagree with the right hon. Member for North East Bedfordshire—I congratulate him on securing the debate and on the way in which he introduced it—about the need for more reports. We do not need the Penrose report as we have already had the Archer report. All sorts of investigations have proved beyond doubt that this is the Government’s responsibility, that the extent of the tragedy is tremendous and that the provision we have made so far has been inadequate. That is the end of the story. What we now need is a resolution.
We are pleased that the Secretary of State attended the debate. Obviously, he is no longer in his place as he has other matters to which he needs to attend. I am also delighted to see my right hon. Friend the shadow Secretary of State in his place. We are all aware that the Prime Minister, in a moment of generosity, said that he would try to resolve this matter by the end of the year. I fear that he will not be able to do so—we know the pressures that Governments work under—and that is a great pity. The one useful thing that the coalition Government could do is to settle issues such as this. Indeed, when I raised the matter with the Deputy Prime Minister when he was deputising for the Prime Minister at Question Time, he said that he would take on the matter personally. I thought that we would at last have a more productive encounter between the two in the name of the sufferers in this tragedy. I hope that such a meeting can take place. If it cannot, the next Administration, whatever form they take—who knows what that will be—should take on the matter and settle it early. There will never be a good time. The only time is the earlier the better.
Sarah Newton (Truro and Falmouth) (Con)
I am grateful to my colleagues inside and outside Parliament for working so effectively with the victims of blood contamination and raising these matters so effectively. Without their support, I would not be here—I would not have found out about this issue—so I am grateful to them. I also wish to recognise the work of my hon. Friend the Member for Guildford (Anne Milton) while she was Health Minister. I know also that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), takes a great interest in this very important subject, and I am particularly pleased that the Prime Minister has indicated that he now wants to take action. I am sure that the work of the Minister and the all-party group will be listened to very carefully by the Prime Minister as they come together to find out what further action can be taken.
I will not go over all the salient points from the findings of the inquiries and the all-party group as they have already been discussed. One of the most important roles of a Member of Parliament, and one that I take very seriously, is to give a voice to the voiceless. In my brief contribution today, I want to do just that for one of my constituents. In a letter to me, she said:
“I would be incredibly grateful if you had the opportunity to express my hurt and disappointment and help strengthen the case for better treatment of others. My name being spoken publicly terrifies me, especially as I in the past have been subject to such ill treatment by the NHS and the court system.”
My constituent contracted hep C as a result of a blood transfusion shortly after giving birth to her son. Sadly, her hep C was not detected until 2004. She has received some help from the Skipton Fund. I do not have time to catalogue the sequence of poor treatment that she has received and her continuing fear for herself and her children. She says:
“At this point in time, none of my three children has been checked for hep C. It is a bridge, they say, they don’t yet want to face. I worry…To try and quantify how this has affected my life would be near impossible. Perhaps with this inquiry, the Government will make sure that those affected have what’s left of their futures made easier.”
Today, in this place, we must make sure we do that.
Mr Andy Slaughter (Hammersmith) (Lab)
In preparing for this debate, I looked at the debate that my hon. Friend the Member for Coventry North West (Mr Robinson) sponsored at the beginning of this Parliament—in October 2010. I noticed that I, like a number of Members, said that action was needed more than contemplation. Since then, we have had many further debates. Indeed, we had a debate last week on hepatitis C in Westminster Hall, to which the Minister responded. We have had other such debates, the ongoing Penrose inquiry in Scotland, attempts to reform the existing arrangements and the very good report yesterday from the all-party group.
Tributes have been paid to the right hon. Member for North East Bedfordshire (Alistair Burt) for his sterling efforts to work towards a final solution. I note also that there is further legal action. Today, a letter for action has gone to the Department of Health from three sufferers of hepatitis C through contaminated blood about the inequity of their treatment compared with those suffering from HIV. The issue is not that nothing has been going on, but how much further on we are after four and a half years. I think the answer is not that much. It is easy to say that that is no one’s fault or everybody’s fault, but we must take some responsibility here. It is the role of this House to hold the Government to account when they are not living up to their moral obligation, which they are not at present.
Let me say one quick word about the existing arrangements. The report is good. It produces a lot of evidence for why the current schemes are not working, and we have heard individual criticisms of Macfarlane, Caxton and Skipton. Having read the report, my conclusion is that none of the trusts and funds is fit for purpose. If they are to continue while we await a final settlement, we must have root and branch reform and the funds must be resolved into one effective body. The politics is wrong. The funds purport to be independent bodies, but they appear to be too close to the Department of Health, meaning they have neither the benefits of independence nor the clout of accountability that should lie with the Department of Health. At the same time, they have become part of this degrading process where sufferers, who are largely reliant on benefits, are effectively begging for resources and often living in a state of penury.
That is only one part of the ongoing situation, which includes Penrose. The same situation has happened in the past, where we have been waiting on a report for consideration. Both the final conclusion on a financial settlement and the clear identification of culpability and responsibility are awaiting an outcome. I am grateful to my constituent, Andrew March, for giving me a very thorough briefing for this debate. Off the top of his head, he set down 14 reasons why unfairness has been caused to sufferers. They include the failure to act by successive Governments, which meant that products were not banned early enough and contaminated products were not withdrawn; that haemophiliacs were tested for both HIV and hepatitis C without their consent and not informed of the result; that haemophiliac children were subjected to hepatitis in infectivity trials; that minors were informed of their status without their parents being told; and that individuals were told of their status either by letter through the post or in public places. I could go on. Those are disgraceful actions. We need closure and an inquiry that will bring those matters to light.
I understand that we are to be told later today that the Penrose inquiry will report on 25 March. That is just before the purdah period and, as the right hon. Member for North East Bedfordshire said, leaves very little time for any conclusions based on those findings to be released before the election. That is deeply to be regretted, because whoever is in government after May will have many pressures on their time. I hope that this issue, if it is still not resolved by then, will not be lost. I would like to hear from both Front-Bench teams today that it will be a priority, whoever is in government, not to let the work that is done, if it is not resolved by then, fall foul of where we are.
Diana Johnson
My hon. Friend makes a good point about the difficulty produced by Penrose’s not reporting much earlier. The APPG was hoping that when we produced our report the Penrose report would be available, and that we could then have the conclusion to the negotiations in Downing street. The delay from Penrose has been very frustrating.
Mr Slaughter
It has been. It is, I think, tragic that we may go into another Parliament without a solution to these issues. If I had to say one thing, it would be this. Yes, we do need a public inquiry. We do need to identify responsibility and culpability. We do need to have the fullest apology based on the clearest evidence of what has gone wrong. We do need to make sure that interim and existing arrangements work properly, and we do need transparency. But, above all, I think we need compensation, and that cannot be delayed, perhaps for years, while all those processes are worked through.
I will, if I may, read a short statement from Andrew March, who will be familiar to many campaigners on this issue. He was the applicant in the judicial review case. He has studiously and devotedly pursued these matters for many years. He says:
“I am one of only 300 HIV positive haemophiliacs who remain alive and was infected at only nine years of age. Of those originally infected in the 1980s, more than three-quarters have died during the course of the past 3 decades. Many of them were my friends. I was also infected with Hepatitis B and C, and despite treatment, I continue to live with the adverse effects of cirrhosis of the liver. I am also one of the 3,872 haemophiliacs…who have been notified as being considered ‘At-Risk’ of variant CJD…Despite the authorities always maintaining that the risk was merely ‘theoretical’, I was shocked to learn in February 2009, that an elderly haemophiliac had been found with vCJD…in his body during post mortem…This news was not entirely unexpected, but I still became very worried that vCJD had the capability to become yet another ravaging illness.
More recently, I was informed by my doctors that I had been exposed to yet another pathogen, this time, Hepatitis E…As I sigh in disbelief that there seems to be no end to the multiple infections, I try to keep looking forward with some degree of hope that this will, one day, be sorted out once and for all.”
Those are the words of an extremely brave and resolute man. He and all the other sufferers deserve respect—which they are not getting from the current financing arrangements—they deserve justice and they deserve a full and proper compensation package. That should include compensation for family members. It should deal with all conditions, and it should remove the stigma of means-testing, ATOS assessments and so on. That is the least that we, as a country, can do for people who have suffered as a consequence of the state’s action.
Dr Julian Lewis (New Forest East) (Con)
Mr Deputy Speaker, having come late to the debate because of a clash with a meeting of a parliamentary Committee on which I serve, I am grateful for the indulgence of the Chair in allowing me to make a brief contribution.
I wish to focus on three points. The first is that people are still, even now, long after the event, being discovered to have been infected with contaminated blood; the second is that momentum for a settlement is in danger of being lost; and the third is that the best treatment is not always available for those who have been infected.
I was struck by what the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) and others said about the debate being a chance to give a voice to individual constituents. I was also struck by the question asked on 10 December of the Deputy Prime Minister, who was standing in for the Prime Minister, by the hon. Member for Coventry North West (Mr Robinson), because he said in that question what he repeated today—that the scandal had reflected badly on successive Governments, possibly going back as far as that of Harold Wilson, if not further. In the context of momentum being lost, he said that the Prime Minister had undertaken in June to look at and rectify the situation. In fact, according to my constituent, Mrs Lesley Hughes, who only a week before he asked his question had got in touch with me about this very issue, the Prime Minister had apparently told one of his own constituents who was affected by this that he hoped to have a resolution within six months. This would have meant the end of the last calendar year.
I said that my first point was that people are still being discovered who were infected long ago, and that is Lesley Hughes’s situation. In 1970, she and her future husband were involved in a very serious road traffic accident in London, and she had to receive no fewer than 44 pints of blood. For many years she knew nothing about the fact that she had been infected, although over those years she had many visits to GPs and hospitals with numerous symptoms of illness, and considerable pain and suffering. Only last year was it finally discovered that she had been infected with hepatitis C by NHS contaminated blood. Her main concern in writing to me initially was that, given that the Prime Minister had said that he hoped to wrap the issue up himself, she was really anxious that we should not get to the general election—which is, after all, scheduled to be about five months after the deadline that the Prime Minister had set himself—without reaching a resolution.
Mr Robinson
I am not sure that the exact undertaking that the Prime Minister gave is recorded anywhere, but it is recorded in exactly those terms by my constituent, Joseph Peaty, as well. Does the hon. Gentleman agree, though, that the impression was left that the Prime Minister would do his very best to get a settlement by the end of the year? We are past that deadline now. Does he agree that, irrespective of the reports being compiled, we do now have the means necessary to settle the issue, and that is what the Prime Minister should try to do?
Dr Lewis
That is exactly my view, and for that reason I wrote to the Secretary of State for Health, drawing attention to the matter. I received a reply dated 12 January from the Minister who will reply to this debate. Of course she was sympathetic in the terms that she used, but the important part of her letter was the conclusion, which was that
“this issue is being looked at very seriously, and…an announcement will be made to affected individuals and MPs once work has been concluded.”
My simple question to the Minister is, when will that work be concluded, and will she and the Prime Minister undertake to get this work concluded, on behalf of my constituent and many others, before this Parliament comes to an end? Otherwise, we are back to square one—a cycle which I am sure has been repeated over and over again.
Finally, I said that I would mention the other point about how the best treatment is not always available. I understand from Lesley, whom I have not met yet but whom I believe to be present with her husband today, and whom I hope to meet after the debate, that there are problems with the fact that many people suffering from infection are offered the older interferon and ribavirin-based treatment, and that not everybody can tolerate that, particularly as it takes a long time to clear the system, and particularly if they are people who are at a later stage of their life.
If the Minister cannot answer today, will she perhaps write to me later about the situation of patients in that position? Kinder and more effective treatments are available, but are not always sanctioned for reasons of cost either by NICE or by individual health trusts. I wish to give others the opportunity to speak, but once again I thank my constituent for her bravery in allowing me to tell her story and attribute it to her, and I thank the House for its indulgence in allowing me to contribute to the debate at such a late stage.
Huw Irranca-Davies (Ogmore) (Lab)
I pay tribute to the right hon. Member for North East Bedfordshire (Alistair Burt) and others who have worked on this issue for some time, as well as those whose names are on the Order Paper today, those who contributed to the report of the all-party parliamentary group and all hon. Members who have spoken today.
I will not name any names in my speech—my constituents have asked me not to do so because of their continuing fear of stigmatisation. I shall use their words, however, because, frankly, I have nothing more powerful to say.
Jessica Morden
I thank my hon. Friend for giving way so early in his speech. He, like me, is the Member for a Welsh constituency. Does he agree that it is important that as we move forward the Government work closely with the Welsh Government, particularly on things such as treatments, so that there is help for those Welsh constituents now that health is devolved?
Huw Irranca-Davies
I agree very much with my hon. Friend. We need a UK solution because this is a UK problem, so work must be done in concert with the devolved Administrations and Governments.
My constituent says that in 1982:
“We were called into consultant’s office, at the…Hospital…My future wife was pregnant and we were strongly advised to have a termination. However, he was not specific about reasons why, other than the possibility of our child either having or carrying haemophilia, so we refused.
1983—Our son was born and they wanted to take a blood test from him. It was after this they told us of my…HIV infection, at this early stage they had no idea what it entailed. We were advised not to mention to other patients at the hospital and to refrain from sexual intercourse until they knew more. Thankfully our son did not have the virus. Feeling uncertain about the future, it was awful to be told we had to keep this to ourselves. At this time it was very much publicised in the media and friends of ours, who knew of my Haemophilia began questioning us on whether or not I had been affected. Suffice to say I felt I was on borrowed time and on my own admittance, went off the rails and neglected my son and new wife.
1985—My wife fell pregnant again and convinced I was going to die sometime soon, the fear and uncertainty about the future made us feel we had no option but to have a termination.”
He goes on to say that a support group was set up and:
“We began attending meetings with the group and felt better for the support but sadly the participants began dying at an alarming rate and it just made the situation worse.
1991—My brother, who also had Haemophilia and HIV passed away. Prior to this we had undergone clinical trials at the hospital and because we were brothers, he was given the placebo. The guilt I felt because I was taking the actual product and had survived was indescribable. The following year my second brother was tragically killed.
1993—In short I had given up, I knew I was going to die and felt I could fight no longer. I ended up in hospital with PCP pneumonia and my wife was told I had a matter of weeks. Even though I had given up on myself thankfully my family and the hospital staff hadn’t…and I eventually pulled through.”
He goes on to describe their three-and-a-half-year fight from 1995 to become the first couple with HIV status in the UK to adopt despite being told no, no and no again. He continues:
“2001—We were asked to consider adopting two more children”,
in addition to the one they had adopted during that period,
“a boy and a girl aged five and seven. We agreed and my wife finally had the family she had been craving. It was just after this, I was told I had also contracted Hepatitis C and possibly vCJD. Obviously we were devastated and all the old uncertainties we had pushed to the back of our minds pushed forward with force. However, all was not lost I was assured a treatment was available.
2002—Late in the year, I began treatment for Hepatitis C. We had been warned prior to this, I wasn’t going to be easy to live with but looking back now I feel this was an understatement. The two children we had living with us, had severe psychological problems and their behaviour just served to exacerbate the situation and subsequently the placement broke down.
2003—The two children went back into care and I found myself unable to cope with my grieving wife and my two existing children. I wasn’t in a very good place at this time and my wife and I came very close to separation. It was only because we had been together since we were sixteen and married at seventeen, we worked to stay together. The treatment reacted with my HIV drugs and I ended up in High Dependency with Pancreatitis. Following this, my wife had to sell her business as I was ill and unable to cope at home without significant help.”
Diana Johnson
My hon. Friend is making an incredibly powerful case, but what strikes me is that not only the individual is suffering but the family members are, too—the wife, the children and everyone else. It is striking.
Huw Irranca-Davies
Absolutely. It rips through not only the individual but their families, friends and every other aspect of their life.
I will continue to the end of my constituent’s story, as it goes on to this day. In 2004, the selling of the business meant that they had limited income and were unable to meet their bills. The debts piled up during their financial struggles and this put additional strain on the marriage. He goes on:
“2005—Our debt situation was spiralling out of control and as I felt a little better in myself my wife, who had studied for a degree while she was out of work could now get a…job as a care manager and she went back to work full time.
2006—We were asked about taking another child for adoption. Understandably following the breakdown of the last placement we were wary but agreed as everything seemed far better than it had been. It was in 2007 we had our second adopted daughter.”
From 2006 to 2010 they saved what they could to clear the debts they had accumulated since 2003. For the next few years, because of his deteriorating health, his wife had to return to part-time work rather than full time and the debts accumulated again. To bring this up to date:
“We have cleared our debts and with my wife working part time we are managing day to day to keep our heads above water. We have the basics we cannot save money or enjoy holidays. We keep away from past friends as I am well aware of how ill I look and do not want to answer their questions. I take a great deal of medication and am trying to live with the side effects, as is my wife!
The Macfarlane Trust had recently sent us a ‘disbursement of reserves’ form, requiring personal and in depth information to enable us to possibly have some money for home improvements. My wife and I felt it was an extremely unjust and unfair way of attempting to distribute funds amongst sufferers of HIV and their families. Not everyone would, or could qualify as they were in rental accommodation, or perhaps their home was not in need of improvements. It was causing a divide amongst the few that have survived this atrocity and we refused to complete it as any reserves we felt need to be distributed equally amongst those of us that are left. It seems the discrimination, separation and sheer lack of consideration for the primary beneficiaries is still very much in evidence.”
My constituents, like those mentioned in so many stories today, are asking not to have to go out with a begging bowl in complex situations, having to prove that they are worthy. This is an entitlement, not something to be begged for. They want some form of inquiry and a clear apology and there is a crying need for root and branch reform of the structures that have been put in place to help them. This is not working satisfactorily.
My constituents’ story will be reflected in the story of every person and every family affected. The disease does not simply affect them; it forces many into penury, marital difficulty and so many other social problems. It is time to sort this out once and for all.
Richard Fuller (Bedford) (Con)
I shall try to restrict my speech to two minutes, because I know that we want to hear the speeches from the two Front Benchers and, of course, from my neighbour, my right hon. Friend the Member for North East Bedfordshire (Alistair Burt), who so nobly started this constructive debate, which will be a great comfort to my constituent, whose family life was devastated when she lost her husband at a young age with a very young family.
The debate has been constructive and we have heard of a number of measures that have been taken over a number of years. We also have the constructive recommendations from the all-party parliamentary group, which have featured heavily. I do not wish to sound a discordant note in this constructive debate, but I believe that despite all that there remains a suspicion to which I want to give voice. The suspicion is that all the responses from the Department of Health over the years have had to be drawn out of it and have not been freely given. The measures are often seen as a contrivance to ensure that a full answer has never been given, and people do not know why. The compensation provided is a construction of a response, but there is a belief that beneath this lies a darkness—a darkness that breeds suspicion about the root causes of all we have talked about today and about who was responsible, and about the feeling that those people remain faceless and nameless, fearing exposure for actions that may have led to what might have been a mighty, mighty wrong, and having an absence of courage to repent of those actions.
We all have to remember that it is our NHS. It does not belong to a political party or to the Department’s officials—it belongs to the people. My request to the two Front Benchers is: will they, to the extent of their powers, shine a light on this darkness and, beyond any financial consideration, provide that comfort to the hearts and memories of the victims?
Andy Burnham (Leigh) (Lab)
We have heard a series of fine speeches today—as has been said, Parliament truly at its best—but none more powerful and affecting than that of the right hon. Member for North East Bedfordshire (Alistair Burt) in leading the debate. Many of the things he said will have affected people greatly, but the words that remain with me now are those that he quoted from a letter he had received: “Every day is like a day on death row for a crime I did not commit.” If that does not convey the sense of injustice we are dealing with, nothing else will, because it really is that appalling.
When historians come to look back at the 2010-15 Parliament, it will be seen to be characterised by a welcome drive to correct historical injustice. First, we saw the apology in relation to the events of Bloody Sunday. We have seen a range of ongoing inquiries related to historical child abuse. There was the action on the injustice that I know too well from my own personal background—the death of 96 innocent people at Hillsborough. The right hon. Gentleman was absolutely right to pay tribute to my hon. Friend the Member for Liverpool, Walton (Steve Rotheram), who put those names on the record. But we cannot put on record the names of the people in this case who have suffered such devastation—not just the people who have died but those whose lives have been ruined as a result of this scandal, and it is a scandal.
What opened up those other injustices has not been the Government voluntarily moving to correct those wrongs, but Parliament. The resolution to those other injustices began here. It is beholden on each and every one of us here today to remember that and to use the power that we have from the office that we hold to work together across the Floor of this House to find a resolution for the thousands of people whose lives have been ruined by this scandal. If we hold to the cross-party spirit that delivered the beginnings of justice in those other campaigns, then we will do so in this case too. The right hon. Gentleman described it as the 15th worst peacetime disaster—like Hillsborough, entirely man-made. To add to that, Lord Winston has described it as
“the worst treatment disaster in the history of the NHS.”
We must resolve today, even if we cannot do it in the time that remains in this Parliament, to make sure that this injustice and this scandal is resolved early in the next Parliament, and that the people who have suffered finally have truth and justice.
I want to explain why I am standing at this Dispatch Box today. Like many others who have spoken, I have constituents who have been victims, including somebody who does not want to be named who speaks of having lived for more than 30 years seeking justice and support, and who contracted HIV and hepatitis C through contaminated blood in the 1970s and ’80s; and my constituent Simon Carter, whose father died and left the family facing a whole range of financial problems—people whose lives have been for ever altered and devastated by the scandal.
There is another reason I am here today. It goes back to a time towards the end of the previous Parliament, when somebody who has been mentioned by Members in all parts of the House, my good, late friend Paul Goggins, asked me to meet him and his constituents Fred and Eleanor Bates and Peter Mossman—now the constituents of my hon. Friend the Member for Wythenshawe and Sale East (Mike Kane) whom he mentioned so movingly—in my constituency office in Leigh, and I did. I had no real understanding of what they had been through, and were going through, until I sat down with them, at Paul’s request, and listened to what they said. That campaign mattered hugely to Paul, whom I miss every day. I will continue to work in his memory to get justice not just for his former constituents but for everybody who has been mentioned in the debate. I want to signal the seriousness with which I will address this issue by speaking in this debate today.
As people have said, it is not that nothing has been done. Plenty has been done. There have been well-meaning attempts in all parts of the House down the years to put in place mechanisms to try to lessen the hardship and address the problems that people face in their daily lives. However, as many hon. Members have said, that has left a patchwork of support that is complex and bureaucratic—that, in the end, is about handing out bits and pieces, with people having to go cap in hand, not even given the dignity they should now have in having the problems that they were given rectified in a proper manner.
As a result of that meeting with Paul and his then constituents in my office in 2010, I reopened the issue at the end of the previous Parliament. Many Members have mentioned the Archer report. A resolution was put in place after that report, but it was not good enough, and that was recognised in all parts of the House. Paul asked me to look again at the issue, and I did.
I want to bring a new perspective to this debate—that of a former Minister who tried to do something; indeed, a former Secretary of State, because that is what I was at the time. I do not say this to blame any individual in the Department of Health, but more in terms of speaking as I found as I tried to lift the shutters that had been pulled down on an issue that the Department wanted to go away. The hon. Member for South Norfolk (Mr Bacon), who is no longer in his place, said that Governments of both parties have failed, and that is absolutely right— they have; there is no debate about that. But I do not detect the failure being caused by Members of Parliament or, indeed, Ministers; I have met many who want to resolve this in the right way. I have to say that in my experience the resistance is found in the civil service within Government. That is often the case in examples such as this; I found the same with Hillsborough too. It is very hard to move that machine to face up to historical injustice.
Mr Robinson
My right hon. Friend is making a very important point. Nobody wants to point the finger of blame, but he has gone to the heart of a problem in Government. He speaks with great authority as a previous Secretary of State. He says that it is hard to get officials to do what a Minister wants, and that is certainly true, but is it not also the case, and therefore a failure of successive Governments, in the plural, and Ministers, in the plural, that officials advise and Ministers decide? That is part of the failure so far.
Andy Burnham
I believe that it is. The hon. Member for Bedford (Richard Fuller) made this point. Perhaps there is a resistance that comes from not wanting to point the finger or to show the culpability of people who perhaps did not do their jobs as well as they might, but that is unacceptable. That is not something that anybody elected to serve in this place should accept. On a personal level, I know how hard it is when faced with such resistance. The way to help a Minister in that position is by giving them the sort of support that has been expressed throughout this Chamber today. That is what gives a Minister the power to have the courage to make a change.
The result of my efforts led to a review of the Skipton Fund, and I give credit to the current Government for continuing that work. It led to a small improvement, which has been mentioned, but, by God, it was hard enough to get that, so I do not underestimate how difficult it will be to move things forward.
Part of the problem is that the people dealing with the issue inside Government are insulated from the people we sit alongside in our constituencies and whose stories we listen to. Could there be a more heart-breaking story than that told by my hon. Friend the Member for Ogmore (Huw Irranca-Davies) about the damage that this scandal has caused down the years? People need to hear and listen to what is being said, to understand why it is immoral to allow the situation to persist and go uncorrected.
I will not go through all the problems raised by colleagues about the inadequacy of the current process of applying for support, but I will pay tribute to the all-party group on haemophilia and contaminated blood, which, under the leadership of my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), produced an outstanding report yesterday. I believe it will further reinforce the case for truth and justice.
I wish to draw the House’s attention to another development, which has not been mentioned today, namely the filing of a legal case by three unnamed victims. They have written to the Health Secretary, asking him to come forward with a settlement before full legal proceedings take place. Of course, it should not have to come to that, but, as colleagues have said, people are still waiting and they have waited long enough. We hope the Health Secretary will listen to that request and take action as soon as he can.
If the Minister, working with the Secretary of State, is able to find a solution, she will have the support of Labour Front Benchers and, I am sure, Members throughout the House. We will offer our good offices to ensure that a settlement can be reached. There needs to be a proper and fair resolution. None of us can predict what the make-up of the House or, indeed, the Government will be after the coming election, but I personally commit to working towards that full and final settlement for which people have waited long enough. I hope that Members on both sides of the House will make a similar commitment. As Paul Goggins said in the Westminster Hall debate mentioned by the right hon. Member for North East Bedfordshire,
“no debate about the issue should omit the need for a proper acknowledgement of what took place and why, and a profound and sincere apology for the suffering created by the disaster.”—[Official Report, 29 October 2013; Vol. 569, c. 201WH.]
The full and final settlement should have four components. First, there must be a national apology for the suffering down the years. Secondly, to echo what my hon. Friend the Member for Hammersmith (Mr Slaughter) has said, there must be an inquiry. Whether it should be a public inquiry or not is a matter to be debated, but, having been involved in the campaign for justice for the 96 victims of the Hillsborough disaster, I know that other forms of inquiry can reach the truth and unlock a campaign for justice. There may be other ways to do it, but people need disclosure: they need to understand how this was allowed to happen. In my view, all papers held by the Department of Health should be released so that people can begin to see the full truth of what went wrong. I do not believe there is any reason at all to prevent that from happening.
The third element is, of course, a proper settlement for all those who have suffered—not just those who are still suffering, but families who suffered greatly as a result of the disruption caused to their lives. Fourthly, as my hon. Friend the Member for Kingston upon Hull North has said, we must give the best treatment possible to those who are still suffering.
The all-party group’s report quoted somebody infected with hepatitis C:
“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.”
Everybody present needs to listen to those words and act on them. Sadly, many of those affected have died and are not able to listen to our proceedings, but they, those who remain and the families they have left behind deserve the dignity of a full and lasting settlement.
The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I welcome the tone with which the shadow Secretary of State responded to the debate on behalf of the Opposition. I also congratulate my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) on securing this debate and on his hard work and commitment—as a Minister, I am well aware of it—over the past year. The same is true of so many colleagues who have worked on behalf of those infected with NHS-supplied blood or blood products before 1991.
I thank all hon. Members who have contributed to the debate, which has been conducted in a constructive and thoughtful way, and, of course, distinguished former colleagues who championed their constituents so ably in the past. As we have heard, many of those constituents have been profoundly affected by this issue. I attended the last debate on it when I was a Back Bencher, and today I have heard once again about the impact these infections have had on the lives of individuals and families.
I will focus mainly on the current situation rather than the past, not because the past does not matter, but because it has been ably covered and because I want to add to the knowledge of the situation as it is now and give an indication of the way forward. I hope Members will understand that. If there are any issues that I do not address, I will, of course, write to Members, and if their concerns involve other Departments, I will seek to get a response from them.
There have been calls for a further inquiry and review. That subject has come up before, with calls to look at the historic circumstances of these events. There are various ways in which that could be done and I acknowledge the suggestion made by the shadow Secretary of State. I stress that the Government wish to be as transparent as possible about these events, but I remind the House that they have already been repeatedly examined in a number of different ways, including in court on a number of occasions, and the Department of Health has already published on its website all the relevant documents held for the period up to 1986. I acknowledge that there might be more to do, some of which relates to Lord Penrose’s work.
The Penrose inquiry has loomed over this debate. Let me give the House a sense of my frustration. When I came into office, I was advised that the original date of publication would be June 2014. Let me also give the House a sense of the seriousness with which I took the preparation for that report. I met Scottish Health Ministers last spring to discuss it and other issues. Obviously, work is taking place in Scotland and the publication of the final report has been delayed. The inquiry now expects to announce a publication date this month. There has been no formal confirmation, although a date has been offered during the course of the debate. I understand that Lord Penrose will examine any particular adverse consequences for infected patients and their families, and identify lessons and implications for the future. That is why we feel we need to wait to see the report.
As the events under discussion took place before devolution, the final report of the inquiry will clearly be of interest to the Government and we await its recommendations. I am extremely frustrated by the continued delay and accept that it will have an impact on the scope of our response in this Parliament.
As has been touched on, the Government, like their predecessors, provide ex-gratia financial and other support through the system of payment schemes that is in place.
Mr Robinson
The Minister has touched on the nub of the issue, namely the Penrose report and the delayed decision. Does she agree that we do not really need that? The broad aspect of the financial settlement that ought to be made is well known to the Government. It is a matter of getting a decision now.
Jane Ellison
I will come on to why I do not entirely agree with the hon. Gentleman, but my concern is essentially that after families have endured so much, I would hate to tell them the way forward only for that to be unpicked and revisited in the light of any recommendations by Penrose. I am afraid that I do not agree with him, because it is important to consider the report.
Mr Slaughter
A moment ago, the Minister said that, given the late reporting of Penrose, she would have to consider the scope of the Government response. Will she be a little more specific: what are the Government likely to say and how far will they go before the election?
Jane Ellison
I will come on to that. Although I cannot be as specific as I would like, I will try to give the House some sense of the way forward.
I stress that the support currently provided is over and above any other state benefits that infected individuals and their families may receive, and moneys paid under the schemes are not subject to tax. Some hon. Members have raised issues relating to the DWP, and I will of course bring those concerns to its attention.
I am aware that many hon. Members have concerns, which they have expressed in some detail, about the way that support for those affected is delivered. During the past year, I have listened to and actively considered the thoughts of all colleagues about how to improve the system. I have met the officers of the all-party group, and spoken a number of times to my right hon. Friend the Member for North East Bedfordshire.
I acknowledge that there is scope for reviewing the support system. I have been open with hon. Members about the fact that I share their concerns about the charitable basis of that support. I thank my right hon. Friend and the all-party group for the survey on which they recently collaborated. This is the first large-scale effort to consult beneficiaries, their families and the wider public on the current system. I will certainly consider its findings—I have looked at the executive summary of the report, which was only published yesterday—and all the other sources of information. From my conversations with Members over the past year, I have a good sense of the report’s direction of travel and of their concerns.
As I have said, in considering possible reforms to the current system, we must take into account Lord Penrose’s findings and recommendations before any specific proposals are made, but I have been ably supported by my civil servants in looking at possible reforms. His report is likely to be lengthy: to give the House some sense of that, the interim report published in 2010 exceeded 600 pages.
If Penrose does not publish until shortly before the House rises, it will be challenging, as Members have recognised, to provide a considered and thoughtful Government response in such a short time. I want to give due respect and consideration to Lord Penrose and his report, not least because it matters so much to so many individuals and families. As I have said, after all they have been through, it would be terrible for us to announce measures that then had to be unpicked or revisited. I reassure the House that however late in the Parliament Penrose reports, we will make a response, although that will inevitably have to be an interim response.
Having acknowledged that not everyone is satisfied—far from it—with the current system of support, it is extremely important to remember that the system makes an enormous difference to the lives of many beneficiaries. To date, more than £365 million in support has been paid to more than 5,000 people in the UK affected by HIV and hepatitis C and their families. Through the reforms made in January 2011, which some Members have mentioned, the Government have improved the system of support. Since they were introduced, more than £70 million in extra funding has been made available in England.
Something that is new since the House last debated this issue is the therapies that are coming through. Members have spoken about the side effects and impacts of existing therapies. Many of the new therapies have a much higher cure rate than existing ones, with far fewer side effects. We understand that cure rates for new therapies are between 90% and 95%, and that the courses of treatment are much shorter. Those figures are based on clinical trials. New data from the early access programme will be evaluated to confirm the robustness of that finding, but it is obviously encouraging news.
I am encouraged by some of the improvements that we can make to the quality of life of those who have suffered from their infections for so long. New treatments for hepatitis C are becoming available through the NHS. While we have been waiting for NICE to publish its final appraisal of the first of the new drugs—Sofosbuvir and Simeprevir—NHS England has taken two important steps to ensure that eligible patients with late-stage hepatitis C can expect to have received treatment by the end of 2015. In April 2014, it published an interim clinical commissioning policy statement to provide access to the new therapies for patients with liver failure. More than 700 patients have already been treated through this policy, at a cost of £38 million. Specialist centres were procured to deliver this early access treatment around the country.
The NHS is developing a further interim clinical commissioning policy for patients with compensated cirrhosis to reduce the risk of their developing decompensated cirrhosis or liver cancer. Subject to its internal approval processes, the NHS is aiming to have that in place from this April. I have confirmed with the clinical director that if any hon. Members are approached by constituents with hepatitis C, they should advise them to consult their GP about a referral to a hepatology specialist to determine whether they have developed cirrhosis.
Medical advances continue to improve the ways in which HIV and hepatitis C can be treated and managed, and I want to take this opportunity to assure the House that the UK now has one of the safest blood supplies in the world, and independent experts continually review current safeguards.
This debate has again allowed me to hear about the issues with which many of those affected live daily. I of course recognise that improvements must be made to the system that provides financial assistance, and I have given considerable thought to that over the past year. Together with those we represent, we need to be realistic about the challenge of making changes that are fair and sustainable. It is very welcome that we can work on a cross-party basis—that is absolutely vital—and it is most reassuring that several hon. Members have emphasised that.
I am hugely frustrated that the much longed-for closure cannot realistically be achieved in this Parliament. Nevertheless, a new Parliament is imminent, and it will provide an opportunity for the next Government to provide closure.
Mr Tom Clarke
The Minister will recall that my right hon. Friend the shadow Secretary of State made some profound comments about the role of the civil service in dealing with these problems. Will she take time to respond to them?
Jane Ellison
I have noted the comments of the shadow Secretary of State. I can only speak from my own experience and say that in all the ways in which I have wished to consider this issue—those have ranged widely over the past year—I have been ably supported by my civil servants. Ultimately, this decision is a political one.
The issue needs to be resolved once and for all. I assure hon. Members that the Prime Minister, the Secretary of State and I continue to work towards that vital aim. I have said that however late Penrose reports, we will respond while the House is sitting. Inevitably, that will have to be an interim response. However, I hope that we can give the House some sense of the work undertaken over the past year and, at that time, respond to the direction of travel signalled in the all-party group’s report and the work of my right hon. Friend the Member for North East Bedfordshire.
In conclusion, I want to say that this was an utterly appalling tragedy, which has caused grief and sadness to many people and their families, as we have so often heard. The Government must do right by those people on whose behalf so many Members have spoken today. I will take away everything that has been said, and as long as I am in my current office, I will continue to work to bring to Parliament the conclusion that so many Members have said they want.
Alistair Burt
I thank all Members who have spoken. What I am most proud of is my role in enabling this debate to take place, which has provided the opportunity for so many speeches. The best contributions were made not just by hon. Members, but by our constituents, because in very many cases we used the words that they have given to us so that we could be their voices. If memorable phrases from today’s debate are remembered, they will be theirs.
I warmly thank all colleagues for their hard work, and I thank those who have worked on the report, not least my secretary Sam Mackewn, who has done a great deal of work in the background. I say a huge thank you to all those in the community of sufferers and beneficiaries who have helped us.
If I have thought of anything during the debate, it is that there is a moment when one feels things shifting. The shadow Secretary of State was right: this Parliament is known for a number of things, but as we have seen through elected Select Committees and their Chairs, it exercises greater power than it used to, as was evidenced by what we heard today. We have all been involved in this issue for a long time—I have been involved with it for more than a decade—and I got the sense that Members of Parliament have just been here too long and listened too many times to the same things. There is almost a sense, not of anger, but of the frustration becoming something else, and I do not think that a future Parliament will wear a Government of any stripe who do not do something about it.
My hon. Friend the Member for South Norfolk (Mr Bacon) put things plainly, and with his support and the imprimatur of another couple of colleagues who are known to be restrictive about public finances, I think we are into a new age on this issue. Having seen that something is wrong, and that finance is needed to put it right, I get the sense that Parliament will demand that of its Government. If the Government cannot respond before the election—as I made clear, I entirely understand and accept what the Minister said—then all the parties have manifestos to write. We could all put something in our manifestos that gives a clear commitment about what will happen should we form part of a Government in the future, and there is no reason why that should not be done with some degree of co-operation. Those who have been so faithful in pursuing this issue, in circumstances that we heard described today, will know that at last they have a Parliament that will no longer take no for an answer.
Question put and agreed to.
Resolved,
That this House supports a further review of the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and 1980s; notes the recent report from the All Party Parliamentary Group on Haemophilia and Contaminated Blood into the support arrangements provided for those who contracted blood-borne viruses as a result; also notes that the Penrose Inquiry into these events will shortly be publishing its findings in Scotland; further notes that those who contracted viruses and their partners and dependants continue to be profoundly affected by what happened; therefore welcomes the Prime Minister’s commitment to look again at this issue; and calls on the Government to respond positively to the APPG report and engage actively with those affected with a view to seeking closure to these long standing events.