Hepatitis C (Haemophiliacs)

Diana Johnson Excerpts

Tuesday 29th October 2013 Westminster Hall

[Diana Johnson (Kingston upon Hull North) (Lab)]

It is a pleasure to serve under your chairmanship today, Mr Dobbin. I congratulate my right hon. Friend the Member for Wythenshawe and Sale East (Paul Goggins) on securing the debate on this very important issue. As he said, he has campaigned for 16 years to bring justice to this community. He set out clearly the key points about the history of what has happened and the issues that are still outstanding.

As the co-chair of the all-party group on haemophilia and contaminated blood, I am delighted to see so many right hon. and hon. Members in Westminster Hall. I particularly welcome the Minister to her role. I am sure that, like her two predecessors as Minister with responsibility for public health, she will develop a keen interest in the issue and get to grips with the points that the community still want addressed.

Although health is a devolved matter, I hope that the Government will look at what is happening north of the border and the recommendations of the Penrose inquiry that are expected in the spring of 2014 and carefully consider the Scottish Government’s response to those recommendations and the lessons that we can learn in the rest of the United Kingdom.

I want to talk about four key issues that my constituent Glenn Wilkinson, the chair of the Contaminated Blood Campaign, has asked me to raise in this debate and that relate to the financial support given to this community. I want to pay tribute to his passionate commitment to seeing that justice is done. I agree with other hon. Members about the need for a much broader and deeper review of what has happened, including a public inquiry into the whole disaster.

The first of the main issues about financial support is the Caxton Foundation application process. There is general dissatisfaction with that organisation, which has been given responsibility for grants to people with hepatitis C who have received stage 1 payments from the Skipton Fund. The Caxton Foundation has given a number of assurances that the application process will become less complex, less stressful and quicker, but when we talk to the community, it says that the grant application is not improving and that, in some cases, it is becoming worse. I fully understand why many people feel that a grant-based body is not what this community deserves, but until we have a different approach, we must make the system work better for those for whom it was set up.

I have some suggestions for the Minister to consider. First, we need a clear list of what grants will be given for published on the website. The lack of clear criteria means that people feel that they are often begging. Secondly, we need a simpler application process. At present, people tell me that they believe they have applied for something only later to find that they have to fill in further forms. That feels like moving the goalposts mid-way through an application process, and it is not fair.

Thirdly, I want to see a clear statement on means-testing. At present, it is my understanding that the Caxton Foundation is not having to means-test most applications, and some payments, such as the winter fuel payment, are paid to everyone. Why is the foundation asking applicants to complete intrusive census forms, which ask for incredibly detailed information about the circumstances of an individual or a family?

Fourthly, we need decisions about applications to be reached in a timely fashion, and a clear target should be set. Possible further measures could improve the efficiency and functioning of all the funds. Will the Minister consider the staffing levels in the schemes, because there is a restriction in place? There is also a need to look again at the availability of financial resources. The Department could introduce some support in kind. It could offer to second a public health doctor to the funds, to complete an assessment of beneficiaries’ needs. That has never been done, and it would be helpful. The Department might also bring to bear its experience of procuring computer and telephone systems. The previous Minister with responsibility for public health, the hon. Member for Broxtowe (Anna Soubry), agreed to review the grant-based system because she recognised that it was demeaning. Will the Minister comment on the progress of such a review?

Hon. Members have already mentioned the unfairness of the two-stage process. I wrote to the previous Minister, asking her to set out the evidence for separating people into the two stages. In particular, I wanted to understand

“whether the rationale for awarding payments to Stage 2 sufferers is based on a desire to support these with the increased costs incurred because of the disease or to compensate them for the increased risk of dying.”

In her letter back to me, she argued that the decision was based on an

“expert review of the evidence”

and that

“the decision was made not to introduce recurrent payments for all as there is a wide spectrum of illness associated with chronic hepatitis C infection.”

Let me put to the Minister three reasons why that argument does not hold up. First, the distinction is not a clear one; there is no blood test. It is a matter of progression, which is not easily determined. That issue is exaggerated by the fact that it requires a liver biopsy to ascertain the level of liver damage, and that, in itself, is potentially life threatening.

Secondly, there is increased evidence that hepatitis C is more than a liver disease. Other Members have already said that a range of symptoms have been identified including fatigue, joint problems and mental health issues. Thirdly, the fact that mortality rates are higher among stage 1 sufferers than stage 2 sufferers seems to be a compelling argument why such an artificial distinction should not hold.

The Contaminated Blood Campaign has committed many hours of research to get to the bottom of the expert evidence. When Professor Brian Gazzard, who is chair of the expert panel, was asked about the matter, he said that they had never discussed the two-stage system; in fact, the experts were expressly asked by the Department of Health not to discuss it. Charles Gore, the chief executive of the Hepatitis C Trust, who was also one of the experts used by the Department of Health, has stated that the two-stage approach is an arbitrary system and that he knows of people who suffer more in stage 1 than others do in stage 2. Will the Minister set out—if she cannot do it now, perhaps she could write to me—what the expert evidence is, so that we are clear about how the decision was reached?

I have two other matters to discuss briefly. On the number of people who are affected, my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr Clarke) asked a parliamentary question about the number of Skipton stage 1 beneficiaries, which is unknown. Will the Department of Health take the necessary steps to identify how many state 1 sufferers are still living? That could be done through contact information that is still held by the Skipton Fund and/or through information now held on census forms by the Caxton Foundation.

On hepatitis C and HIV, I absolutely agree with what the hon. Member for North East Bedfordshire (Alistair Burt) said about how we set different parts of the community against one another. The list of anomalies between those infected with hepatitis C and those with HIV and their family members continues to grow. The imbalance of the system now operated by the schemes is such that some family members will get assistances and others will not. That area needs to be considered, especially because HIV and its treatment have changed considerably over the past 20 years. That needs to be recognised.

Finally, I would be delighted if the Minister accepted an invitation to come to a meeting of the APPG on haemophilia and contaminated blood.