Hepatitis C (Haemophiliacs)

Tom Clarke Excerpts

Tuesday 29th October 2013 Westminster Hall

[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.

--- Later in debate ---

[Jane Ellison]

My hon. Friend makes fair points. I spent much of the past three years chasing him in his previous role to put right a continuing historical wrong, and he is right to push me in the same vein. I take his remarks, as I have always taken his advice and thoughts, extremely seriously, and will reflect on them.

I want quickly to mention the Penrose inquiry, of which I am very aware. As the hon. Member for Kingston upon Hull North said, it will report in the spring. Right hon. and hon. Members may be interested to know that the Department of Health has provided all reasonable assistance to Lord Penrose, explaining what documents are held in the Department.

[Mr Tom Clarke]

Will the Minister give way?

[Jane Ellison]

May I continue, as I fear I will not get through the remaining points? I will be happy to speak to the right hon. Gentleman straight after the debate.

We have made available to Lord Penrose any additional documents that he has felt are necessary to his inquiry. While it is continuing, I shall not comment on the inquiry or evidence given to it, but I shall consider whether the Department will make a response. Given that Lord Penrose is considering pre-devolution matters, it is hard to imagine that there will not be implications to which I and the Department shall need to respond. We do not know the exact shape of things, but the inquiry is on my radar, and we shall be considering it.

The hon. Member for Easington (Grahame M. Morris) made a point about specialist hepatitis C nurses. That is the responsibility of NHS England, and I undertake to write to that body to draw its attention to his comments.

I think that I have now covered most of the specific points that I can answer today; unfortunately, I cannot respond to some of the detailed points. There was a challenge about the number of Skipton Fund stage 1 beneficiaries; there are difficulties in identifying the numbers, but we will examine that issue and see whether we can respond in more detail to the challenge given by the hon. Member for Kingston upon Hull North.

Inevitably the debate has been, for me, an invaluable opportunity more to hear some of the arguments than to give specific answers on the important points that colleagues have raised so well on their constituents’ behalf. I am happy to have the meetings that have been suggested.