Hepatitis C (Haemophiliacs)

David Simpson Excerpts

Tuesday 29th October 2013 Westminster Hall

[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.