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Contaminated Blood Products

Volume 599: debated on Wednesday 9 September 2015

I beg to move,

That this House has considered contaminated blood products.

I am delighted to serve under your chairmanship Mr Owen. I am also pleased that the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), is here to respond to the debate.

To set the context—[Interruption.]

Thank you, Mr Owen.

To set the context for this debate, it is my duty and responsibility to acknowledge the very good work of the all-party group on haemophilia and contaminated blood. One of the joint chairs of the group, my hon. Friend the Member for Kingston upon Hull North (Diana Johnson), is here today for this debate. The all-party group published its report on contaminated blood products in January and clearly outlined the requirements of Government in respect of this very vexatious issue.

I secured this debate to highlight the cause of the victims of contaminated blood and blood products, in particular my constituent, Brian Carberry, a haemophiliac from Downpatrick in South Down. Along with all the other victims, he has waited too long for truth and an acknowledgement that the Government, through the Department of Health, imported such contaminated blood products from the USA in the 1970s and 1980s. The victims have waited a long time for proper compensation and access to drugs that are currently being assessed by the National Institute for Health and Care Excellence, and they need those drugs before stage 2 of the illness, which causes liver dysfunction, sets in.

I hope the Minister can today provide a detailed outline of how she will address this issue once and for all. Two thousand people touched by this tragedy have already died, and that number is rising, as people die waiting for the Government to make a final determination. I urge the Minister today to bring this prolonged delay to an abrupt close with a programme of action, including a commencement date for the consultation, which was announced back on 17 July, and the moneys to help those who have endured endless pain, suffering and anxiety for so many years.

In the ’70s and ’80s, around 7,500 people were infected with hepatitis C or HIV as a result of treatment with blood products provided by the NHS. Many of those people were being treated for haemophilia. Those viruses did not just transform their own lives; their families’ lives were also turned upside down, and some of them, including my constituent, can no longer work.

The several thousand people treated with contaminated blood and blood products by the NHS have been denied the real financial security, and the health and social care that they need. The support currently in place is only partial and does not offer the full and final settlement that those affected and their families need to live with dignity, and it falls far below the equivalent compensation in the Republic of Ireland. The development in support, financial and otherwise, over the years has been haphazard and has been delivered much too slowly. Contaminated blood victims already face substantial financial demands because of the nature of their infections and the inadequacy of their financial compensation.

One lady suffering from the infusion of contaminated blood products told me last week that some sufferers are denied even the basic stage 1 payments, even though they have a weakened and compromised immune system, and suffer chronic fatigue, fibromyalgia, depression and unexplained rashes, with a potential link to breast cancer for women. This lady also had an ileostomy, as her bowel burst, and she had a stillborn child, with all the attendant trauma attached to such an incident. Unlike other contaminated blood patients, she has been denied stage 1 Skipton fund payments. Needless to say, she did not receive the Caxton payments either.

Between 1970 and 1991, almost 33,000 people were infected with hepatitis C; between 1978 and 1985, 1,500 haemophiliacs were infected with HIV, and some of them were co-infected with hepatitis C as well. The issue of compensation is a big one, and I congratulate the hon. Lady on bringing it forward for consideration—the number of people here in Westminster Hall today is an indication of its importance. Does she agree that, regardless of the stage of a person’s illness, compensation should be given to them?

I thank the hon. Gentleman for his very helpful intervention. That is the case that I am trying to make—that there needs to be a full and final end to this issue, with a good story for the people affected, not only through compensation, but with proper access to the right drugs that will help them and ease their journey.

In the Commons on 25 March, the Prime Minister pledged to help “these people more” after the publication of the Penrose report, promising that “it will be done” if he was re-elected. He was re-elected, but that inquiry, which scrutinised events between 1974 and 1991, has been branded as failing to get to the truth by Professor John Cash, who is a former president of the Royal College of Physicians of London and a former director of the transfusion service.

I thank the hon. Lady for taking my intervention, and I congratulate her on securing this important debate. I am here on behalf of several of my constituents, particularly Andy Gunn, whose whole life has been blighted by this unimaginable injustice. Despite several promises that we should expect a comprehensive Government response to the report of the Penrose inquiry, we have heard nothing regarding the time scale. Does she agree that the Government must take immediate action to rectify that?

Before the hon. Lady carries on, let me say that I understand that Members here have individual constituency cases, but this is a 30-minute debate and I want the Member who secured it to make her case as concisely as she can in the time given, and I want the Minister to have the time to respond. The hon. Lady will also have a couple of minutes at the end of the debate to sum up. Let us see how we go; I am sure that the Minister will be generous with her time.

Thank you, Mr Owen, and I also thank the hon. Member for Inverness, Nairn, Badenoch and Strathspey (Drew Hendry) for his intervention, which captured the crux of the problem. We want a full and final settlement for these people, accompanied by drugs for them, because they have suffered immeasurable and unimaginable pain and grief.

It is interesting what Professor Cash—a former president of the Royal College of Physicians and a former director of the transfusion service—has said. He asserts that the Inquiries Act 2005, which defines the parameters of public inquiries, enabled the executives responsible to avoid giving evidence. Apparently, the Act meant that there was a whole area that he could not address, and that is an area worthy of further investigation. I hope that the Government will not fall short in relation to that.

The Haemophilia Society was also critical of the Penrose inquiry report, saying that there had been systemic failures in public health and public oversight. Furthermore, we know that Lord Prior of Brampton made a statement to the House of Lords on Friday 17 July, which was reaffirmed in the Commons on Monday 20 July, when my hon. Friend the Member for Kingston upon Hull North asked her urgent question. However, so far neither Parliament nor the wider public, including the victims, have been told when the consultation announced on 17 July will take place. The victims of contaminated blood products are still suffering while the Government continue to procrastinate on this issue.

I just wanted to widen the debate. I have taken everything the hon. Lady has said, but I want to speak in particular for some of my constituents with contaminated blood who are supported by the Macfarlane Trust, to which I hope she might refer. My constituents are reporting that it is not working and should be dissolved, and they, too, want a final settlement so that they can live out their lives in peace. This is just one small group of people, and that the least we can do so that they can finish their lives, which were blighted unexpectedly, peacefully. I would very much like her to refer to that body.

I thank the hon. Lady for her helpful intervention. The bottom line is that none of these trusts has provided adequate help or succour for those who have suffered immeasurably. These people need an acknowledgement of liability and a sum of money that will enable them to live independently and with dignity. Such a sum should be supplemented with ongoing payments to recompense them for years of lost income and for the physical and emotional trauma that the contraction of these viruses has caused.

I support my hon. Friend and welcome this debate. Will she stress that, although we are giving voice to people in this debate, we are unable to give their names because of the continuing stigma? Those people include the “The Forgotten Few”, some of whom are constituents of mine, who are co-infected with HIV and hepatitis C. They and their families have lived for many years with not only the financial hardship but the stigma. In every debate on this subject I have been unable to name them, but they deserve justice as well.

I am grateful for that helpful intervention, which characterises the real emotional trauma and pain that people who have been given contaminated blood products have had to endure for many years. The uncertainty needs to be addressed as well. The only body and the only people who can address the problems endured by those affected are the Government.

There is concern that the compensation resulting from the consultation could come directly out of Department of Health funds. Nobody who is suffering as a result of contaminated blood products wants anyone else with any other type of illness to suffer because of a lack of resources. Dedicated funding should come out of the Government’s contingency funds for people who suffer from this ailment, because these are special circumstances.

One of the families from my constituency who are affected are present in the Public Gallery. Does the hon. Lady agree that in framing compensation it is important to look not only at the pain, suffering and misery that has already occurred, but at the future needs of those concerned?

The hon. and learned Gentleman is absolutely right. People’s future lives have to be taken into account, and we must also think of those who will contract these viruses at a later stage. The Government must consider the planning of resources and the availability and approval of medicine.

I am so pleased that my hon. Friend was able to secure this debate and congratulate her on doing so. Does she agree that the situation is intensely difficult for families, particularly because of the lack of transparency over the years?

My hon. Friend has captured the anxiety and trauma of those affected and the need for Government compassion on this issue.

I will encapsulate the principal points. We need to know the commencement date of the consultation. It was supposed to be in autumn; we are now in autumn and we have not heard anything since the announcement on 17 July. We need the Government to detail how the £25 million will be spent and whether the various trusts will be dissolved and a lump sum made available. We need to know whether the Government will acknowledge liability and provide ongoing payments for victims and for the families who have been left with nothing following the death of a family member who contracted a virus or viruses as a result of contaminated blood products.

I say again: victims feel strongly that compensation should come not from the Department’s principal budget but from the Government’s contingency fund. Victims must have access to proper medicine, and drugs are required to be prescribed at stage 1 of the illness, before the onset of stage 2, in order to prevent liver dysfunction.

The Minister said in a statement that the Penrose report,

“together with over 5,000 documents from the period 1970-85…have already been published by Government”,

and that the Government

“have also committed to releasing all additional documents from 1986-1995 late this summer.”

When is “late this summer”? When will the documents be released?

These people, who are suffering so terribly, require truth from the Government. My constituent went to the Royal Victoria hospital in Belfast for continual reviews and was told that he had to get another test. He said, “Why do I have to get another test? Everybody knows I was born a haemophiliac, along with my two brothers.” They said, “You have hepatitis C,” and he said, “How did that happen?” It was because of blood products that were imported from the United States. That was the first he knew of it, 20 years ago. Members can imagine the trauma he felt, and that of his wife, children and wider family. Those blood products have meant that he has to attend hospital on a weekly basis and is without a job. He cannot do what he wants to do most: care for and bring up his family.

For the sake of Brian and many, many others, I urge the Minister to ensure that an abrupt close is brought to this matter, that a date for the consultation is announced, that interim moneys are made available, that full and final compensation is made available out of the Government contingency fund, and that all these terrible injustices are rectified once and for all.

Before the Minister responds, she has indicated that she would like to speak for about 12 minutes. She has a little more time, so I am sure she will be generous in taking interventions.

I will do my best, Mr Owen.

I congratulate the hon. Member for South Down (Ms Ritchie) on securing this debate; she is a consistent champion of this issue. Many other colleagues present have also done so much important work over many years on this difficult and tragic topic.

During the ’70s, ’80s and early ’90s, many individuals were sadly infected with hepatitis C, HIV, or both, from NHS-supplied blood or blood products before effective donor screening tests were introduced. To this day, many people continue to be affected by the grievous outcome of their earlier treatment, so it is right that the matter is given our attention and collaborative consideration. I know that I will not be able to satisfy all the points raised by the hon. Member for South Down, but I hope that I can at least give the House a very keen sense of how much I share the desire to move towards a better outcome and a conclusion.

Does my hon. Friend the Minister plan to address the subject of drugs? Can she put a rocket up the National Institute for Health and Care Excellence to get that part of the business in order?

I do intend to touch on new treatments, because that is one aspect of the landscape in this policy area that has changed profoundly for the better in recent years. I am also always happy to follow up on any issues with colleagues.

I know how much interest there is in this issue, as demonstrated by the presence of so many Members today. Many Members have heard from constituents, as have I, of the significant and devastating impact of this tragic matter on their lives. Successive Governments of all complexions have looked at and wrestled with this difficult issue. I have spoken directly to affected individuals and families and I read many letters—every single one that is sent to me—detailing people’s concerns and frustrations with the current schemes of support and the situation in general.

I assure Members that the matter of infected blood and the reform of the payment schemes continues to be a priority for me. I meet regularly with my officials in the Department of Health, including over the summer, to maintain progress towards a better outcome. As I indicated in my statement before the recess, the Government are considering the provision of future financial assistance, and other support for those affected, within the context of the spending review and in a way that is sustainable for the future. It does need to be sustainable.

We will be consulting to help develop the shape and structure of any new scheme. Members know that, and we have said that before. I appreciate and share the frustration that we have not been able to move to publish a date. I cannot give Members a date today, but we still intend to consult as soon as possible.

It is vital that the Minister gives us a date for the commencement of the consultation today. We are talking about a life and death issue for many, many people. I know the Minister appreciates that, but she has to understand that a date is the most compelling requirement, along with the compensation and access to drugs.

I am well aware of that fact, and I do not casually say that I cannot give a specific date today. The consultation will take place before the end of the year, as we have previously committed to. We are working on the detail of that, but I cannot give Members a specific date today. It is an absolute priority to bring it forward. The area is complex, both legally and in its proximity to the spending review, but we have made that commitment.

Not if it is on the same topic. I have said what I can today, and I have also said that I will inform Members as soon as I can when we have a date for the consultation. I have done everything in my power to keep Members informed on the issue, and I will continue to do so.

In addition to a full, fair and final resolution to the issue, the victims also need clarity on access to drugs. Will the Minister clarify why NHS England has made access to drugs more complicated than it is in Scotland, Wales and Northern Ireland with the networks of hospitals? Why is that required?

I will come on to drugs and access to drugs, although perhaps not quite in the detail that my hon. Friend seeks. I will now make progress and not take any interventions for a while to ensure that I get to the points that Members have raised.

Suffice it to say, I was strongly aware, as I was present for most of the urgent question on 17 July, that access to treatment is uppermost in Members’ minds. Considerable time and attention is being given to the issue, and I will touch on it in my remarks. Following the consultation, we will take into account the views that we receive, and then look to work as quickly as possible to announce how the schemes will be reformed. Several thoughtful suggestions have already been made to me by MPs and patient representative groups on how we should approach the consultation. I am grateful for those suggestions, which I am considering carefully.

The Government are continuing to work with the devolved Administrations on the issue, and I hope that the hon. Member for South Down agrees that we should work as much as possible towards a four-nations approach. I suggest that, as part of that, it would be helpful if she shared her knowledge and insight with Ministers in Northern Ireland. We continue to do so at official level and we will ensure that appropriate ministerial exchanges happen.

While decisions have not yet been made on what the new scheme will look like, the House should be assured that, given the level of unhappiness with the existing schemes, we are considering root and branch changes, which I know is what campaigners are calling for. I would, however, like to be clear that while we are working to establish a full and fair resolution, liability has not been established in the majority of cases, so it would not be appropriate to talk about payments in terms of compensation, particularly on the scale that some campaigners and colleagues envisage. I know that Members are not happy with that, but I need to say that for the record. We will continue to fund ex-gratia payments, but we will look to reshape those following consultation. It is my hope that, pending decisions after the consultation, transition to a new scheme can begin from April 2016.

While many individuals may feel frustrated at the expected timescale for scheme reform, it is important that we take time to get things right, because we need suitable and lasting changes. That includes identifying all the complexities involved in making changes to a system of support such as this, and the need in due course to consider consultation responses.

As colleagues have mentioned, in March 2015, the Prime Minister announced that up to £25 million would be allocated to support transition to a reformed scheme. As previously stated, I confirm that we do not intend to use that for the administrative costs that might be associated with reform of the existing schemes. We expect to announce our plans for that money once we have a better understanding of what the wider scheme reform might comprise. If it is necessary to roll that money into the next financial year, we will do so.

The announcement by the Prime Minister on the allocation of the £25 million came on the day the Penrose inquiry final report was published. I am aware that many campaigners have written to their MPs regarding the Government’s response to Penrose. We have fulfilled our commitment to implement the recommendation in the Penrose report to take

“all reasonable steps to offer an HCV test to everyone…who had a blood transfusion before September 1991 and who has not been tested for HCV”

by reminding GPs, nurses and other clinical staff of the matter, along with the NHS guidance to offer a hepatitis C test to those at risk. I can give Members details if they are interested in how we have done that. Those reminders will act to ensure that awareness is significantly increased across England and will help to identify anyone who is currently unaware that they may have been infected with hepatitis C. However, the House should be reassured that look-back exercises took place in 1991 and 1995 to try to identify those individuals, so I would not expect the recent action to result in significantly increased uptake of hepatitis C testing.

I refer the Minister to the report by the all-party group on haemophilia and contaminated blood, which my colleague the hon. Member for Kingston upon Hull North (Diana Johnson) chairs. It was an extremely comprehensive report. We heard from many hundreds of victims on how to reform the trusts and funds. Will the Minister make a commitment that, when she has some timeline details, she will make a ministerial statement on the Floor of the House of Commons, so that Members will be able to question her?

I have done my best to ensure that the House and individual Members are kept informed at all times. I have had a number of individual Member meetings. I will touch on this again, but I will of course look to keep the House informed on all important timelines, as we have to date. The all-party group, to whose comprehensive report my hon. Friend rightly referred, has informed our thinking, but there has never been a public consultation on any aspect of scheme reform. No Government have done that before, so this will be the first time that any formal public consultation has been undertaken.

No. I will touch on the issue of drugs, and if there is time afterwards, I will take another intervention.

Many Members are aware that a new generation of promising drug treatments is emerging that has the potential to offer an effective cure for many patients with hepatitis C. The National Institute for Health and Care Excellence issued guidance recommending two of the drugs earlier this year, and those are now routinely available on the NHS for eligible patients. NICE is developing guidance on three further treatments and has recently consulted on draft guidance. NHS England announced in June that it has made £190 million available this year so that patients with confirmed cirrhosis from hepatitis C can benefit from the new treatment options. In previous debates, I have offered advice to Members on how constituents who are worried that they are not getting access to those options, yet meet the clinical guidelines, can get access. In particular, it is important that patients to talk to their hepatologist.

We estimate that around 550 individuals infected with hepatitis C through historical treatment with NHS-supplied blood and blood products can now access the new treatments under the NHS’s interim commissioning policies. As the Secretary of State committed to on 25 March, the Department of Health is continuing to work to bring transparency to the matter of infected blood. The documents covering the period from 1970 to 1985 have been published in line with the Freedom of Information Act, and are available on the National Archives website. The Department is completing the transfer of the documents that we hold for 1986 to 1995 to the National Archives. Once those have been handed over, the National Archives will need to take the records on to its systems and make them available on its “Discovery” website. As to the precise date, we had hoped that it would be this summer, but for technical reasons the National Archives has indicated that it anticipates the documents being made available on its website after the January 2016 releases. I stress that that is only for technical reasons associated with the transfer of the documents.

I appreciate the House’s frustration and I am sorry that I will not be able to let the hon. Member for South Down back in to respond at the end. I understand the sense of urgency and the need for change. In hoping to reach a conclusion as soon as is practicable, I have, through the hon. Member for Kingston upon Hull North (Diana Johnson), offered parliamentarians a meeting ahead of the consultation so that I can hear their concerns and suggestions and so that they can contribute to shaping scheme reform.

Motion lapsed (Standing Order No. 10(6)).

Sitting suspended.