Contaminated Blood

Andy Slaughter Excerpts

Thursday 15th January 2015 Commons Chamber

[Alistair Burt]

I am deeply grateful to my hon. Friend, but the gratitude should actually be given to the sufferers and their beneficiaries who have made an attempt to approach MPs, sometimes for the first time. This year, we were able to bring it home to people that despite all the privacy and other reservations they might have had—some have not been able to tell family or close friends what they have been suffering—there is a need to approach MPs such as my hon. Friend to make them aware of the issue. That has been a new element of the campaign and is another reason for this debate.

[Mr Andy Slaughter (Hammersmith) (Lab)]

I do not wish to embarrass the right hon. Gentleman, who has cross-party support on this issue, but I think that he is being very modest and that his intervention with the Prime Minister has helped to galvanise the position. Given that it now looks as though Penrose will not be published until late March, is there sufficient time to get that settlement before the general election campaign and the election itself?

[Alistair Burt]

Again, I am grateful to the hon. Gentleman for his kind remarks. I do not think there is time, because I think it is possible that Penrose will have such far-reaching implications that no Government could make sensible decisions on future financial considerations until it had reported. I hope that my hon. Friend the Minister might be able to say a little more today about what might be done outside the financial considerations. I think that a conclusive settlement cannot now be reached. Penrose was originally supposed to report in March last year, which would have given time. That was the timetable we were all hoping to work to, but needs must and we are where we are.

--- Later in debate ---

[Mr Andy Slaughter (Hammersmith) (Lab)]

In preparing for this debate, I looked at the debate that my hon. Friend the Member for Coventry North West (Mr Robinson) sponsored at the beginning of this Parliament—in October 2010. I noticed that I, like a number of Members, said that action was needed more than contemplation. Since then, we have had many further debates. Indeed, we had a debate last week on hepatitis C in Westminster Hall, to which the Minister responded. We have had other such debates, the ongoing Penrose inquiry in Scotland, attempts to reform the existing arrangements and the very good report yesterday from the all-party group.

Tributes have been paid to the right hon. Member for North East Bedfordshire (Alistair Burt) for his sterling efforts to work towards a final solution. I note also that there is further legal action. Today, a letter for action has gone to the Department of Health from three sufferers of hepatitis C through contaminated blood about the inequity of their treatment compared with those suffering from HIV. The issue is not that nothing has been going on, but how much further on we are after four and a half years. I think the answer is not that much. It is easy to say that that is no one’s fault or everybody’s fault, but we must take some responsibility here. It is the role of this House to hold the Government to account when they are not living up to their moral obligation, which they are not at present.

Let me say one quick word about the existing arrangements. The report is good. It produces a lot of evidence for why the current schemes are not working, and we have heard individual criticisms of Macfarlane, Caxton and Skipton. Having read the report, my conclusion is that none of the trusts and funds is fit for purpose. If they are to continue while we await a final settlement, we must have root and branch reform and the funds must be resolved into one effective body. The politics is wrong. The funds purport to be independent bodies, but they appear to be too close to the Department of Health, meaning they have neither the benefits of independence nor the clout of accountability that should lie with the Department of Health. At the same time, they have become part of this degrading process where sufferers, who are largely reliant on benefits, are effectively begging for resources and often living in a state of penury.

That is only one part of the ongoing situation, which includes Penrose. The same situation has happened in the past, where we have been waiting on a report for consideration. Both the final conclusion on a financial settlement and the clear identification of culpability and responsibility are awaiting an outcome. I am grateful to my constituent, Andrew March, for giving me a very thorough briefing for this debate. Off the top of his head, he set down 14 reasons why unfairness has been caused to sufferers. They include the failure to act by successive Governments, which meant that products were not banned early enough and contaminated products were not withdrawn; that haemophiliacs were tested for both HIV and hepatitis C without their consent and not informed of the result; that haemophiliac children were subjected to hepatitis in infectivity trials; that minors were informed of their status without their parents being told; and that individuals were told of their status either by letter through the post or in public places. I could go on. Those are disgraceful actions. We need closure and an inquiry that will bring those matters to light.

I understand that we are to be told later today that the Penrose inquiry will report on 25 March. That is just before the purdah period and, as the right hon. Member for North East Bedfordshire said, leaves very little time for any conclusions based on those findings to be released before the election. That is deeply to be regretted, because whoever is in government after May will have many pressures on their time. I hope that this issue, if it is still not resolved by then, will not be lost. I would like to hear from both Front-Bench teams today that it will be a priority, whoever is in government, not to let the work that is done, if it is not resolved by then, fall foul of where we are.

[Diana Johnson]

My hon. Friend makes a good point about the difficulty produced by Penrose’s not reporting much earlier. The APPG was hoping that when we produced our report the Penrose report would be available, and that we could then have the conclusion to the negotiations in Downing street. The delay from Penrose has been very frustrating.

[Mr Slaughter]

It has been. It is, I think, tragic that we may go into another Parliament without a solution to these issues. If I had to say one thing, it would be this. Yes, we do need a public inquiry. We do need to identify responsibility and culpability. We do need to have the fullest apology based on the clearest evidence of what has gone wrong. We do need to make sure that interim and existing arrangements work properly, and we do need transparency. But, above all, I think we need compensation, and that cannot be delayed, perhaps for years, while all those processes are worked through.

I will, if I may, read a short statement from Andrew March, who will be familiar to many campaigners on this issue. He was the applicant in the judicial review case. He has studiously and devotedly pursued these matters for many years. He says:

“I am one of only 300 HIV positive haemophiliacs who remain alive and was infected at only nine years of age. Of those originally infected in the 1980s, more than three-quarters have died during the course of the past 3 decades. Many of them were my friends. I was also infected with Hepatitis B and C, and despite treatment, I continue to live with the adverse effects of cirrhosis of the liver. I am also one of the 3,872 haemophiliacs…who have been notified as being considered ‘At-Risk’ of variant CJD…Despite the authorities always maintaining that the risk was merely ‘theoretical’, I was shocked to learn in February 2009, that an elderly haemophiliac had been found with vCJD…in his body during post mortem…This news was not entirely unexpected, but I still became very worried that vCJD had the capability to become yet another ravaging illness.

More recently, I was informed by my doctors that I had been exposed to yet another pathogen, this time, Hepatitis E…As I sigh in disbelief that there seems to be no end to the multiple infections, I try to keep looking forward with some degree of hope that this will, one day, be sorted out once and for all.”

Those are the words of an extremely brave and resolute man. He and all the other sufferers deserve respect—which they are not getting from the current financing arrangements—they deserve justice and they deserve a full and proper compensation package. That should include compensation for family members. It should deal with all conditions, and it should remove the stigma of means-testing, ATOS assessments and so on. That is the least that we, as a country, can do for people who have suffered as a consequence of the state’s action.

--- Later in debate ---

[Jane Ellison]

I will come on to why I do not entirely agree with the hon. Gentleman, but my concern is essentially that after families have endured so much, I would hate to tell them the way forward only for that to be unpicked and revisited in the light of any recommendations by Penrose. I am afraid that I do not agree with him, because it is important to consider the report.

[Mr Slaughter]

A moment ago, the Minister said that, given the late reporting of Penrose, she would have to consider the scope of the Government response. Will she be a little more specific: what are the Government likely to say and how far will they go before the election?

[Jane Ellison]

I will come on to that. Although I cannot be as specific as I would like, I will try to give the House some sense of the way forward.

I stress that the support currently provided is over and above any other state benefits that infected individuals and their families may receive, and moneys paid under the schemes are not subject to tax. Some hon. Members have raised issues relating to the DWP, and I will of course bring those concerns to its attention.

I am aware that many hon. Members have concerns, which they have expressed in some detail, about the way that support for those affected is delivered. During the past year, I have listened to and actively considered the thoughts of all colleagues about how to improve the system. I have met the officers of the all-party group, and spoken a number of times to my right hon. Friend the Member for North East Bedfordshire.

I acknowledge that there is scope for reviewing the support system. I have been open with hon. Members about the fact that I share their concerns about the charitable basis of that support. I thank my right hon. Friend and the all-party group for the survey on which they recently collaborated. This is the first large-scale effort to consult beneficiaries, their families and the wider public on the current system. I will certainly consider its findings—I have looked at the executive summary of the report, which was only published yesterday—and all the other sources of information. From my conversations with Members over the past year, I have a good sense of the report’s direction of travel and of their concerns.

As I have said, in considering possible reforms to the current system, we must take into account Lord Penrose’s findings and recommendations before any specific proposals are made, but I have been ably supported by my civil servants in looking at possible reforms. His report is likely to be lengthy: to give the House some sense of that, the interim report published in 2010 exceeded 600 pages.

If Penrose does not publish until shortly before the House rises, it will be challenging, as Members have recognised, to provide a considered and thoughtful Government response in such a short time. I want to give due respect and consideration to Lord Penrose and his report, not least because it matters so much to so many individuals and families. As I have said, after all they have been through, it would be terrible for us to announce measures that then had to be unpicked or revisited. I reassure the House that however late in the Parliament Penrose reports, we will make a response, although that will inevitably have to be an interim response.

Having acknowledged that not everyone is satisfied—far from it—with the current system of support, it is extremely important to remember that the system makes an enormous difference to the lives of many beneficiaries. To date, more than £365 million in support has been paid to more than 5,000 people in the UK affected by HIV and hepatitis C and their families. Through the reforms made in January 2011, which some Members have mentioned, the Government have improved the system of support. Since they were introduced, more than £70 million in extra funding has been made available in England.

Something that is new since the House last debated this issue is the therapies that are coming through. Members have spoken about the side effects and impacts of existing therapies. Many of the new therapies have a much higher cure rate than existing ones, with far fewer side effects. We understand that cure rates for new therapies are between 90% and 95%, and that the courses of treatment are much shorter. Those figures are based on clinical trials. New data from the early access programme will be evaluated to confirm the robustness of that finding, but it is obviously encouraging news.

I am encouraged by some of the improvements that we can make to the quality of life of those who have suffered from their infections for so long. New treatments for hepatitis C are becoming available through the NHS. While we have been waiting for NICE to publish its final appraisal of the first of the new drugs—Sofosbuvir and Simeprevir—NHS England has taken two important steps to ensure that eligible patients with late-stage hepatitis C can expect to have received treatment by the end of 2015. In April 2014, it published an interim clinical commissioning policy statement to provide access to the new therapies for patients with liver failure. More than 700 patients have already been treated through this policy, at a cost of £38 million. Specialist centres were procured to deliver this early access treatment around the country.

The NHS is developing a further interim clinical commissioning policy for patients with compensated cirrhosis to reduce the risk of their developing decompensated cirrhosis or liver cancer. Subject to its internal approval processes, the NHS is aiming to have that in place from this April. I have confirmed with the clinical director that if any hon. Members are approached by constituents with hepatitis C, they should advise them to consult their GP about a referral to a hepatology specialist to determine whether they have developed cirrhosis.

Medical advances continue to improve the ways in which HIV and hepatitis C can be treated and managed, and I want to take this opportunity to assure the House that the UK now has one of the safest blood supplies in the world, and independent experts continually review current safeguards.

This debate has again allowed me to hear about the issues with which many of those affected live daily. I of course recognise that improvements must be made to the system that provides financial assistance, and I have given considerable thought to that over the past year. Together with those we represent, we need to be realistic about the challenge of making changes that are fair and sustainable. It is very welcome that we can work on a cross-party basis—that is absolutely vital—and it is most reassuring that several hon. Members have emphasised that.

I am hugely frustrated that the much longed-for closure cannot realistically be achieved in this Parliament. Nevertheless, a new Parliament is imminent, and it will provide an opportunity for the next Government to provide closure.