Hepatitis C (Haemophiliacs)

Paul Goggins Excerpts

Tuesday 29th October 2013 Westminster Hall

[Paul Goggins (Wythenshawe and Sale East) (Lab)]

I am grateful to have the opportunity once again to draw the attention of the House and of Ministers to the injustice that still faces those who in the 1970s and 1980s became infected as a result of treatment with contaminated blood products.

Let me say at the outset that, although I seek in this debate to highlight the particular issues and concerns of those with haemophilia who were infected with hepatitis C, I recognise, of course, that the issues affect others beyond that group. Many haemophiliacs received other infections, HIV in particular, and some were dual-infected with HIV and hepatitis C. Others were multi-infected by the range of other viruses to which they were exposed. Some haemophiliacs were treated with blood taken from donors who later died from CJD. Others did not have haemophilia, but were none the less infected as a result of their NHS treatment. I am sure that some who contribute to the debate later will refer to the experience of those who have been affected in those other ways, and a number of points I will make will have a broader relevance to those people’s situations.

The reason that I selected financial support for people with haemophilia infected with hepatitis C as a topic for debate is simple: it reflects the specific concerns of three of my constituents with whom I have been campaigning on the issue for 16 years. They are Peter Mossman, Fred Bates and Eleanor Bates, who is Fred’s wife. I pay tribute to their determination and the single-minded way in which they have worked with other members of the haemophilia community in pursuit of justice and truth.

I am delighted that you, Mr Dobbin, will oversee our proceedings this morning, although given your keen interest in the topic, I suspect that a bit of you would like to participate.

[Mr Jim Cunningham (Coventry South) (Lab)]

I congratulate my right hon. Friend on securing the debate, which is one of many over the years. Does he, like me, think and hope that the Minister will give positive answers this morning, given the many debates in the past, so that the people affected can experience justice?

[Paul Goggins]

I am grateful to my hon. Friend for that intervention. He makes precisely the point I was moving on to. I welcome the new Minister, the hon. Member for Battersea (Jane Ellison), to the debate and to her new responsibilities. Whatever else she achieves in her time as a Minister—and I hope she achieves a great deal—nothing would be more important than bringing a measure of justice to those who have suffered from such injustice over so many years. Lord Winston described it as the worst treatment disaster in the history of the NHS.

I am delighted that we are joined this morning by so many hon. Members from both sides of the House—particularly the hon. Member for North East Bedfordshire (Alistair Burt), who raised the issue again with the Prime Minister in a clear and determined way a few days ago. I am also pleased that my right hon. Friend the Member for Leigh (Andy Burnham) is in attendance for the start of the debate. It is unusual for a Secretary of State, or shadow Secretary of State, to attend an Adjournment debate in Westminster Hall. His attendance is appreciated; he is keeping a promise made earlier this year. My constituents have asked me to thank him this morning for his willingness to listen—not only now in opposition, but when he was the Secretary of State.

[Andy Burnham (Leigh) (Lab)]

I apologise, Mr Dobbin, for the fact that I cannot stay for the whole debate. I am here to show solidarity with my right hon. Friend the Member for Wythenshawe and Sale East (Paul Goggins), who has represented his constituents outstandingly, and with Peter Mossman and Fred and Eleanor Bates, whom I met in my office with my right hon. Friend when I was Health Secretary.

I want my right hon. Friend and his constituents to understand that the commitment I gave to them was not a one-off, convenient commitment, but a permanent one. If I were to find myself back in government, that commitment would remain. Does my right hon. Friend agree that there needs to be a further process of truth and reconciliation, so that those concerned have all the answers for which they are still looking?

[Paul Goggins]

I am grateful to my right hon. Friend and I agree with him entirely. There needs to be not only a review of the current financial arrangements, but a deeper search for the truth, to bring justice, an explanation and a profound apology to those who have suffered. I will make some remarks about that later.

I will not dwell this morning on the long history of the injustice, other than to remind the House that of the 4,670 people with haemophilia who were infected with hepatitis C or HIV, at least 1,757 have died from the effects of the viruses; I say “at least” because the number is almost certainly higher than that. Although it was recognised at the time that the use of imported blood products carried a very high risk, treatment continued and patients were simply kept in the dark. As people tried to get to the truth, they were met with a lack of honesty and deep disrespect. Their dogged persistence is remarkable.

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

I congratulate my right hon. Friend on his excellent speech, the work he has been doing and obtaining the debate. I know that the debate and the figures he gave relate mainly to England. His late friend and mine—his predecessor, Alf Morris—would be proud of the work he is doing.

Would my right hon. Friend allow me to introduce one Scottish aspect to the discussion? In Scotland, the Penrose inquiry is taking evidence on a wider range of issues than has so far been possible in this House, including about what steps were taken to protect the public, given the clinical knowledge available at the time. Without delaying the action for which he urgently calls, would he take that on board and would the Minister reflect those views?

[Paul Goggins]

I am grateful for my right hon. Friend’s intervention. He is a fine campaigner on a range of issues, but on none more so than this. He did great work with my predecessor, the late Alf Morris. I referred to my 16 years of campaigning with Fred, Eleanor and Peter, but I was, of course, only picking up the baton; Alf had worked with them tirelessly for many years.

My right hon. Friend raises a pertinent point about Penrose, because when he reports no Government will be able sit back and do nothing. Profound questions will be posed by that report and they will apply every bit as much here as they do in Scotland. I am grateful to my right hon. Friend for his timely reminder.

In January 2011, two years after the independent inquiry led by Lord Archer of Sandwell, the Government concluded a review of the support available to those who had been infected with hepatitis C and HIV. Along with others, at the time I welcomed the additional lump sum and annual payments to those infected with hepatitis C who had reached the so-called stage 2—essentially, where cirrhosis has been diagnosed. Other improvements were made, but it was clear to many of us from the outset that for the vast majority nothing would change; they would continue to suffer without the help they needed and were owed. That suffering is deepened by the confusing arrangement of the funds that are meant to help them.

In April, the Minister’s predecessor attended a meeting of the all-party group on haemophilia and contaminated blood. I see a number of right hon. and hon. Members here who were present at that meeting; they will remember that it was fairly stormy and that a range of views were expressed about the funds. Those present will remember what was said. I made a note of some of the comments: “It is utterly bizarre....so many funds”; “a nightmare of bureaucracy”; “something is badly wrong”; and “it is not acceptable to have to go cap in hand”. Those comments were all made by the Minister’s predecessor, leaving those who attended wondering why she had not come to the meeting with solutions rather than joining in the chorus of criticism.

My constituents want one fund for haemophiliacs with hepatitis C, essentially bringing together those parts of the Skipton Fund and the Caxton Foundation that currently administer the limited financial support available. They believe that that would reduce bureaucracy and, more importantly, enable those who manage the funds to increase focus on their specific needs. Although they acknowledge others’ needs, they want and are entitled to a better response than they currently receive.

Within the new fund, the immediate priority should be a complete overhaul of the stage 2 assessment. Currently, the lump sum and annual payments start only after hepatitis C has caused cirrhosis. Three out of four people registered at stage 1 do not progress to stage 2, even though they, too, experience extreme and severe symptoms, including great fatigue and often painful bleeds.

The discrimination between those at stage 1 and stage 2 has been brought home to me through my constituents’ experience. Over the many years I have known Peter Mossman and Fred Bates, I have seen them on good days and bad. I have seen them in pain and distress, but I am aware that their most painful moments have been at times when I have not seen them, because they have not been able to get out of bed and out of the house. They suffer similarly, but one of them is at stage 1 and one is at stage 2.

The discrimination is as incomprehensible as it is unjust, and it has enormous consequences. Those at stage 1 receive a one-off payment of £20,000; those at stage 2 receive an additional £50,000 lump sum plus an annual payment, which is currently £14,191. The Minister should scrap this crude distinction and urgently consider implementing a wider assessment of the health and well-being of each individual. The payments are intended to help people cope with the difficulties that they face, and more should benefit from them.

[David Simpson (Upper Bann) (DUP)]

Like others, I congratulate the right hon. Gentleman on securing this important debate. This issue started in the 1970s, so the problem has now been with us for 43 years. More than 80% of the individuals with a bleeding disorder did not benefit from any ongoing payments for a long time. That must be rectified. The Government must review immediately how the issue is handled.

[Paul Goggins]

I am grateful for the hon. Gentleman’s support for that argument. Differentiating between stage 1 and stage 2 creates a false and discriminatory division. It is not acceptable, and it does not help the many people registered at stage 1 who are not at stage 2 because they have not been diagnosed with cirrhosis, but who still often live in great pain and distress. It is vital that they get the financial and other help that they absolutely need.

Currently, the Caxton Foundation must try through discretionary payments to address the urgent needs of those at both stage 1 and stage 2. The fund simply does not have enough money, and as decisions are made about whose need is greater, recipients feel as though they must beg even for essentials. Ministers will need to obtain and share more accurate data, particularly to assess how many of those registered at stage 1 have died and what the likely financial costs would be of a revised arrangement between stages 1 and 2. That information is vital, but one fund with the resources to make lump-sum and annual payments to all those who need them is an essential first step.

Other issues must also be addressed. People with or without haemophilia who have been infected with hepatitis C should be exempt from the employment and support allowance work capability assessment and placed automatically in the support group. It heaps indignity on injustice to put them through the Atos back-to-work test when work is simply impossible for the vast majority of them. Will the Minister hold urgent discussions with the Secretary of State for Work and Pensions with a view to creating that exemption? It would be compassionate, relatively inexpensive and a clear indication that she means business.

I also ask the Minister to consider the specific needs of those, such as my constituent Eleanor Bates, who care for their loved ones. The Caxton Foundation is meant to help them, but they frequently feel that they are last in the queue. Their lives have also been affected deeply by their partners’ infection, and their needs as carers must be addressed.

Reforming the funds and providing a fairer, more effective system of financial support would be an important step in the right direction, but 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. Campaigners still want a public inquiry, and I support fully their calls for transparency and accountability.

If the Government continue to set their face against a formal public inquiry, they should, in my view, consider other mechanisms established in the recent past to get at the truth of an historic wrong. Two years ago, the Prime Minister commissioned the highly respected lawyer Sir Desmond de Silva to undertake a full investigation into the circumstances surrounding the death of the Northern Ireland solicitor Pat Finucane in 1989. Although this approach was not welcomed by Mr Finucane’s family, Sir Desmond had access to all the intelligence files, Cabinet papers and earlier reports, and concluded that there had been what the Prime Minister described last December as “shocking” levels of state collusion.

In relation to another tragedy that took place in 1989—I am pleased that my right hon. Friend the Member for Leigh is still here—the Hillsborough independent panel, which was welcomed by the families of the 96 people who died at the FA cup semi-final, also demonstrated a determination to get to the truth. As a result of the report, inquests have now been reopened.

Whatever Ministers decide to do in this case must, of course, be discussed with those whose lives have been directly affected. Continuing to do nothing is simply not acceptable. A serious Government-backed inquiry must be held, with access to all the remaining records and the power finally to get to the truth of what happened and why. In addition to fair financial support, those who have suffered so much are still owed a full explanation and a sincere, profound apology.