Hepatitis C (Haemophiliacs)

Jane Ellison Excerpts

Tuesday 29th October 2013 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Dobbin. I thank all hon. Members who have contributed. This is not the first such debate I have sat through; as a member of the Backbench Business Committee, I helped to allocate the Back-Bench debate in 2010. I sat through that whole debate, so I came to this post at least familiar with the strength of feeling on this issue and with the way in which so many hon. Members have worked so hard over many years to represent their affected constituents.

Inevitably, at the beginning of week four of my time in office, I must, I fear, disappoint those hoping for new policy announcements. The debate has perhaps been more useful for me, listening to Members’ contributions, than it will be for those listening to me. It has been incredibly helpful to hear the many comments that have been made, and I will try to answer as many as I can. If I do not have the knowledge or time to answer any points, I undertake to write to hon. Members about them. Let me also say straight away that I am more than happy to have the meetings that have been asked for. I have some thoughts about how we can get the most out of them and make sure they give us a platform on which to move forward.

I thank all those who have contributed to the debate. I congratulate the right hon. Member for Wythenshawe and Sale East (Paul Goggins) on securing it on behalf of those with haemophilia who were, sadly, infected with hepatitis C as a result of treatment with blood products before 1985. Many Members have talked about the impact on constituents, and that has come home very forcefully to me.

Members have given me much to reflect on, but I would like to take some time to lay out the current position. Everyone who has spoken has said they would prefer us to be somewhere different, but it is relevant to lay out the practical support that has been offered to date and where successive Governments have got to. Indeed, the presence of a former Secretary of State at the beginning of the debate rather underlined the fact that successive Governments have struggled to achieve a final resolution. I very much welcome the cross-party tone of the debate and the shadow Minister’s commitment to work with the Government.

The Government are fully committed to supporting affected haemophilia patients, by ensuring that haemophilia and hepatology services in the NHS are as good as possible and by providing direct financial assistance. There is the prospect of some good new treatments for hepatitis C, with fewer side effects than the current treatment and less of an impact on day-to-day life. We all welcome that, but I recognise that although these new therapies may treat the infection, they may not alleviate all the associated health effects. For many of those affected by hepatitis C, there is a continuing need for support.

In January 2011, my right hon. Friend the Member for South Cambridgeshire (Mr Lansley), then the Secretary of State for Health, informed the House that we would provide additional support for those affected. It is important to remember that that support was available to not just haemophilia patients, but any patient infected with HIV or hepatitis C by an NHS-supplied blood transfusion before 1991.

Although many who have spoken this morning are seeking a longer-term resolution, let me quickly go through the additional practical support that the Government have put in place. We linked the annual payment for HIV awarded by the previous Government to inflation, so it does not lessen in value. We introduced a similar payment for those most seriously affected by hepatitis C, and we increased the value of the lump sum for that group to £50,000. I very much hear the concerns some Members expressed about the divisiveness of separating different groups, but the lump sum for that group was nevertheless increased substantially.

A discretionary payment mechanism was also introduced to meet specific financial needs for all those infected with, or affected by, hepatitis C. None of those affected now have to pay for their prescriptions. In addition, £300,000 has been made available over a three-year period to provide counselling services to those affected by hepatitis C. All those payments are tax-free and are disregarded for the purposes of benefits and determining eligibility for social care services.

To pick up the point about the exemption regarding employment and support allowance, one of my predecessors made representations in that regard. The issue is not in my remit, and the decision is obviously for the Department for Work and Pensions, but I certainly undertake to raise the issue as a result of the debate and to revisit it with the appropriate DWP Minister.

A combination of fixed and discretionary payments was previously decided on as the best way of ensuring greater financial certainty for people facing the most severe consequences from infection. The idea was that it would retain a degree of flexibility so that assistance could be tailored to an individual’s personal situation, and the debate has clearly shown how different the situations of hon. Members’ constituents are.

The set-up put in place could also complement the other support people might receive, such as through the benefits system. The flexibility that gave was thought to be important, because an individual’s needs vary significantly. However, I know there is concern among haemophilia patients and others infected with hepatitis C that there is insufficient support—this has been the focus of much of the comment today—for those who have developed chronic infection, particularly Skipton Fund stage 1 beneficiaries, on whose behalf many Members have eloquently spoken.

The scientific and clinical advice that the Department received during the review did not support the case for making regular annual payments to all those infected with hepatitis C. I am advised that some people with chronic hepatitis C infection clear the virus, and that those numbers could increase with the new therapies that are emerging. Decisions on financial support have been informed by the evidence, where that is available.

The spectrum of possible consequences of hepatitis C infection appears to be wide-ranging, and, in many cases, causal association has not been established. That has been a problem in the past. Ministers were grateful for the advice of experts on that area—a complex one, obviously—ahead of the 2010 review. Following the review, the then Minister with responsibility for public health, my hon. Friend the Member for Guildford (Anne Milton), promised that new evidence would be assessed regularly. That challenge was put to me several times in the debate. Those assessments will help with future decisions whether to make changes to the payments system.

The advisory group on hepatitis recently completed its first assessment of the clinical and scientific evidence published since the 2010 review, and the Department has sought further detail from the group on some of the information in the report. Some people affected by hepatitis C dispute the expert interpretation of the evidence, so Department of Health officials have commissioned a systematic review of the scientific and clinical evidence on the natural history of hepatitis C. That will report in autumn 2014. I shall raise with officials the question whether that could be brought forward. An earlier report could be useful in the light of other events.

We hope that, in addition to providing a definitive analysis of the available evidence, the systematic review will be of value for service planning in the NHS. Several hon. Members have referred to other parts of the NHS and the provision made for continuing care, so I think that the exercise has additional value. The hon. Member for Kingston upon Hull North (Diana Johnson) made the case, and although I cannot respond to her detailed points and questions about some distinctions that are made, we are aware of the dispute. I undertake to write to her if I can respond in more detail.

Several trusts have been mentioned this morning, but I understand that beneficiaries of the Caxton Foundation have not always found it responsive to their needs. This morning, hon. Members have expressed concerns about how it has operated since it was established in 2011. I have seen recent correspondence between campaigners and Caxton Foundation trustees, so I am aware of some of the unhappiness.

I want to give reassurance on one point: the foundation has £2 million for payments in England and has not yet spent all the money available to it. If it needs more money, it can make a business case to the Department. I understand that it will be doing so this year, and we shall consider that on its merits. It has been working hard to improve its services in the past year and has already established some processes to: reduce the time between application for and payment of straightforward grants, an issue mentioned by several hon. Members in the debate; make payments in the form preferred by the beneficiary; and continue to review where it can improve further.

The hon. Member for Kingston upon Hull North made points about published criteria for the application process, means-testing and specialist doctors. Those are all detailed points that I shall consider, and on which I shall respond to her, but I shall need to make contact with the foundation, because all decisions about payments are made by the trustees. I do not have the power to direct them on how to make decisions, but after the debate I intend to write to remind them that the trust deed enables them to meet any charitable need and not just those that arise directly from an individual’s hepatitis C infection. If hon. Members have other points that they want to raise with me, I shall be happy to put them to the foundation. Clearly, some of those that have been raised this morning are matters for concern.

Several right hon. and hon. Members have talked about public inquiries, or a process of truth and reconciliation. The right hon. Member for Wythenshawe and Sale East made interesting points about different approaches in recent years. I shall reflect carefully on what he said, which I think other right hon. and hon. Members supported, about considering different approaches.

The Department of Health has put relevant facts for the period in question—1970 to 1985—in the public domain, on its website; however, colleagues have called for more material to be put in the public domain, and I shall reflect on that, as well as on what has been said this morning about the different models of truth and reconciliation processes. It was interesting, and it is something for me to reflect on.

[Alistair Burt]

I thank the Minister for what she has said about her openness with respect to the inquiry. I recognise that she is new to her post, but if there is one subject that the Department knows all about, it is the one we are debating. It has all the information it needs.

I do not expect the Prime Minister to come to a definitive decision at the meeting in a couple of weeks about what he or the Department can do, but I hope that the Department will give a briefing of the right tone, saying that there is an opportunity to settle the matter. Somewhere among the options—either the first or the last—is the one that settles things. It has existed for some time. I ask my hon. Friend to do all she can, using the same spirit as is in her response on opening things up through an inquiry, to point the Prime Minister in that direction, so that as he deliberates on the question and she finds her feet in dealing with it, we can, as the debate has urged, move towards finding a way to close the matter.

[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.

[Nadhim Zahawi]

Will the Minister give way on that point?

[Jane Ellison]

If my hon. Friend will forgive me, I need to conclude.

I have heard the big challenge that I have been set this morning. It is one that many of my distinguished predecessors have been set, and I do not underestimate its nature or scale. There is, and has been for a long time, great unhappiness about this topic; many people have wrestled with it. I assure right hon. and hon. Members that I will do my best to rise to the challenge.