Contaminated Blood

Tom Clarke Excerpts

Thursday 15th January 2015 Commons Chamber

[Alistair Burt]

There is no doubt that these matters predated devolution. As most colleagues are aware, there is a Scottish inquiry going on. Almost inevitably when it reports, it must report on things that pertain to the United Kingdom Government. I notice that the Secretary of State for Health has joined us, which illustrates the importance of this issue to all of us. He is enormously welcome, especially given the burdens that he carries. The UK dimension of this is indeed very real.

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

rose—

[Alistair Burt]

I will give way, but I hope that Mr Speaker will be understanding.

[Mr Clarke]

The right hon. Gentleman mentioned the Penrose inquiry. We are all awaiting that report with great interest. Given his discussions with the Prime Minister, is he in a position to tell us when that report is expected?

[Alistair Burt]

My latest understanding is that the Penrose inquiry has said that later this month it will announce when it will report so I think that by the end of January the leader of the inquiry will have announced when publication will take place. I will touch on that later; the non-reporting so far is one problem that we have had to deal with.

Let me give one further brief story as part of the background to the statistics. I have been privileged to work with one family where three brothers died. To give an indication of what that meant, the sister wrote to me:

“the story of my three brothers, all dead, as a direct result of the treatment given to them by the NHS. The impact on the family? A devastation that time has not and never will heal, owing to the lack of acknowledgement over these deaths by both the Government and the medical profession…Family life is never the same with any bereavement, and we can only cherish their memories and their offspring, but there are still so many un-answered questions as to the decisions made”.

Each of us has a number of stories that we could raise, and I apologise for not being able to read out more.

Why now? The answer is that there has been a lot going on in recent times. This Parliament began with the very first Back-Bench debate, initiated by the hon. Member for Coventry North West (Mr Robinson), who I am pleased to see in his place. I am sure that that helped lead to an announcement in January 2011 by the then Secretary of State of further changes to the funds providing payments, but underlying issues remained outstanding. We were all approached.

On 18 October 2013, I asked the Prime Minister a question on the issue. I will not repeat the detail, but it got a warm response from the Prime Minister who understood the problem and promised that he would put support into it, meet the gentleman that I wanted him to see, and take it up. To put this in historical context, the reason for approaching him was that the scale of the tragedy is certainly on a par with those issues for which the Prime Minister has apologised in this Parliament—Hillsborough and Bloody Sunday—having the bravery to recognise what had been done in the past, with the authority that only a Prime Minister could have.

We took the Prime Minister at his word. I was proud to take my friend, my constituent and his colleague to that meeting. We said we needed No. 10 to offer to work on what more might be done to close off the issue, and since then the Prime Minister has indeed put members of his policy team to work, together with my hon. Friend the Minister. I am grateful for the Prime Minister’s engagement and I am, of course, hopeful. I hope that my hon. Friend the Minister will say more about that work.

My question was followed up infinitely more powerfully by a debate on 29 October led by Paul Goggins, in which he outlined some of the issues that we agree are still to be settled. He spoke principally about the funds and people’s finances, the bureaucracy and inconsistency of the funds, the discrimination suffered by those who did not fit certain categories, the crude distinction between stage 1 and stage 2 hepatitis C sufferers, the inadequacy of funds for making discretionary payments, and the absence of transparency and accountability over the years. He suggested that if the Government were to continue to reject a public inquiry, there should be an alternative process, including:

“In addition to fair financial support, those who have suffered so much are still owed a full explanation and a sincere, profound apology.”—[Official Report, 29 October 2013; Vol. 569, c. 201WH.]

Hovering in the background of all our deliberations were a Government who were prepared to take on a public inquiry. In 2008, the then Health Minister for Scotland, now the First Minister, announced to her great credit the sort of judicial investigative inquiry on the transmission of infectious disease via transfusions in Scotland that has not been held for the UK as a whole. It covers effectively all the major issues dealt with by Archer, and will very likely have comments to make that will have a bearing on UK-wide policy. It may well have implications for financial considerations in respect of responsibility for what happens and what needs to be done.

As I told the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke), we do not yet have that report, but while MPs have waited for it we have not been idle. In April the all-party group and additional colleagues working with me, held two public meetings at Westminster. We wanted to keep the community informed of what was happening, discuss expectations and hear from them. As MPs attacked the issue yet again, we were asking the Government to focus on the key issues. Those meetings helped to reinforce our sense that we were talking about the right themes—the changes that life had brought for people who had not expected to live, and the financial considerations that that now brought them. There is the problem of leaving anything; the problem of mortgage and insurance; and the problem of the bereaved and the dependants, which we all know very well. They all have to be in the front of the Government’s mind as they approach this.

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[Graeme Morrice (Livingston) (Lab)]

May I say from the outset how pleased I am that the right hon. Member for North East Bedfordshire (Alistair Burt) has secured a debate on an issue that has had profound and devastating consequences on the lives of at least two of my constituents and indeed thousands of individuals and families across the country?

I hope that through my contribution I will be able to give a voice to my constituents who have been affected by contaminated blood and who, up until now, have had no answers to what is considered to be one of the worst tragedies in modern health care. The experiences of my constituents echo many of the findings in the APPG report, particularly in terms of the inadequacy of the support available and the difficulties encountered when applying for entitlements from the Skipton Fund. I want to take this opportunity to praise the work of the APPG for haemophilia and contaminated blood.

I was deeply saddened to hear of the plight of two of my constituents who received contaminated blood during the 1980s.

[Mr Tom Clarke]

My hon. Friend will be aware that some of us who have sought for many years to get legislation through the House but have not yet achieved it feel that whoever wins the next election should make sure that time is available for this. Does he agree with that objective?

[Graeme Morrice]

Yes, I certainly concur with my right hon. Friend and commend him for his work in this field.

My constituent Mr Billy Cannon of West Calder suffered from a burst ulcer in 1986, which meant he required two blood transfusions. Mr Cannon was fine after the operation and recovered. However, it was not until August 2010, some 24 years later, when he was diagnosed with advanced liver cancer that he discovered he had hepatitis C. Sadly, after a brave battle, Billy Cannon, aged 57, passed away in February 2013. The loss of Billy, understandably, has been devastating for the Cannon family and I wish to take this opportunity to pass on my sincere condolences to Linda, Billy’s wife, who has shown great courage in the face of a very difficult set of circumstances.

It is the circumstances around Mr Cannon’s death that are so hard to accept because there have been no answers, no apology and no acknowledgement that mistakes were made that led to his untimely death. His wife recognises that apportioning blame will not bring back her beloved husband. Nevertheless, the death of Billy has had such profound consequences for many different aspects of her life and leaves so many questions unanswered.

Like Billy Cannon, another constituent, Vera Gaskin of Livingston, also contracted hepatitis C from contaminated blood. You, Madam Deputy Speaker, may recall that I raised her circumstances with the Prime Minister in the House a few years back. Mrs Gaskin received a blood transfusion during her treatment for cancer in 1985. Fortunately, Vera recovered from the cancer. However, later in 1996 when she began to feel unwell, it was revealed that she too had hepatitis C. Again, no explanation was given to Mrs Gaskin of how she had been infected with contaminated blood.

What is evident in the case of both of my constituents is the lack of information on the circumstances surrounding the passing of hepatitis C through contaminated blood. It is for this very reason that it is so important that there is a review of the events and decisions that led to the tragedy.

Luckily, Mrs Gaskin was in the early stages of the virus when she was first diagnosed and could therefore receive treatment. Nevertheless, living with hepatitis C has been particularly difficult for her and has impacted on all aspects of her life and that of her husband and family. The stigma alone of having hepatitis C has been mentally draining for Mrs Gaskin and her quality of life has been greatly reduced. The hepatitis C has denied her many opportunities and brought many difficulties.

What makes Vera Gaskin’s story even more upsetting is that she has not only had to come to terms with the devastation of her diagnosis, but has had to deal with an inadequate support system, further adding to her distress. Her view of the Skipton Fund, set up to help those affected by the tragedy, is:

“It is not fit for purpose, does not serve the victim and is causing more harm than good”.

I believe that this speaks volumes about the effectiveness of the support arrangements put in place following the tragedy.

I recognise that some improvements have been made to the support and compensation available to those affected, but changes are still clearly required in two areas: first, in the criteria used to determine entitlement for payment from the Skipton Fund, and, secondly, in the amount of financial support available. Despite having the medical proof that she had cirrhosis—the medical criteria required in order to receive further compensation—Mrs Gaskin was denied her stage 2 payment from the Skipton Fund.

She is not alone in encountering such difficulties. The APPG report revealed that 16% of all claims considered by Skipton have been deferred or rejected, many on the basis of insufficient proof. It was not until after a year-long battle that Mrs Gaskin’s application to receive her second stage payment was approved. What is evident from my constituent’s experience is that the criteria used by the Skipton Fund are too strict and only make it more difficult for victims to receive funds that they are perfectly entitled to. In response, I would urge the Government to take action to improve the system of allocating funds and to review the criteria, making it easier for those affected to provide proof.

The second important issue about the support arrangements is the amount of compensation available. Although no amount of money will be able to take away the pain experienced on a daily basis by those affected, it is clear that the amount of compensation available is simply not enough. Many individuals living with hep C continue to experience hardship and financial difficulties, despite the existence of Government-established funds, which is why I would urge the Government to reconsider the amount available with a view to increasing it so that individuals can maintain a good quality of life.

In conclusion, I am sure all Members would agree that what my constituents and others across the country went through is tragic and cannot be undone. That said, I am hopeful that a positive outcome can be reached in the form of a review of the circumstances and the support arrangements available—for the sake of those who are sadly no longer with us and for the sake of those who continue to suffer. The all-party group report makes some important recommendations, to which I hope the Government will respond carefully and positively. I strongly support the report’s recommendations, particularly the calls for a public apology from the Prime Minister on behalf of successive Governments. I hope that, following this debate and, most importantly, following the publication of the Penrose inquiry, some form of justice will be delivered for each and every individual and family across the country who continue to have to deal with the consequences of this awful tragedy.

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[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

I apologise for my cold, but I promised my constituent, John Prior from Moodiesburn, this morning that I would seek to put on record a very controversial letter—some would say a lengthy letter—which he sent to me and which I thought I should share with the House.

Before doing that, I congratulate the all-party group on its comprehensive report and the right hon. Member for North East Bedfordshire (Alistair Burt) on the way in which he introduced the debate and on the work that he is doing. I welcome the other speeches that we have heard, including the one from my hon. Friend the Member for Kingston upon Hull North (Diana Johnson).

I turn to the letter from my constituent, a voice that I think should be heard. John Prior said this:

“I was told aged 20 in 1994 that I had chronic hepatitis C by my haemophilia consultant at the Glasgow Royal Infirmary. I had been given contaminated blood as a child at Yorkhill children’s hospital in Glasgow.

The blood was donated from pooled donations of thousands of donors including prisoners in US jails. The haemophilia doctor told me I would eventually need a liver transplant but did not know when. He said it could be 3 months, 3 years or 30 years. I was in complete shock, myself and my family thought I had AIDS. It’s been like living on death row not knowing when I would need a liver transplant.

To my horror, my GP wrote to my employer and told them I had hepatitis C and did not expect me to work for more than 7 years due to my infection. The letter was dated one year before I was told I had hepatitis C, so my work knew about my infection before myself.

As an adult I kept my hepatitis C status to myself and close friends and family. I never told my colleagues. I only told one of my bosses as I was struggling in work, I couldn’t concentrate and kept nodding off at my desk. He’s been very supportive and lets me do menial jobs that don’t require much thought. My sick record at work is horrendous and I’m lucky to still have a job.

Relationships were virtually impossible for me as I felt worthless and frightened I would infect someone. I could not get a mortgage, and life insurance and travel insurance are prohibitive.

My treatment at one stage was 20 tablets a day and 2 injections a week into my stomach which I did myself for 6 months. It was a horrific experience and I felt I just wanted to die. At one point the nurse took blood from me for part of a study into why people with hepatitis C are dying at different rates. She told me she was surprised I was not taking anti-depressants.

My liver consultant applied to Skipton for the stage 2 payment but my application was rejected because I had not reached the ‘crisis’ point. How can a charity ignore the recommendations of a liver consultant? My experience with Caxton was just as bad. It would take numerous emails and phone calls to get in contact with them. I felt like I was begging the way, they treated me, they insisted I provide a letter from my consultant to confirm I was on treatment. It was I who had to run around seriously ill arranging everything for Caxton. I will never contact Caxton again. These charities are not fit for purpose”.

My constituent goes on to make other comments which I think it best not to repeat. His letter goes on to say:

“Over 80% of victims do not receive any ongoing financial help from Skipton yet we are ill.”

He concludes:

“After all that’s happened to myself I will have to be reassessed by the DWP for my entitlement to DLA which I use for my Motability car. I was originally awarded DLA for life 24 years ago. I am worried sick that I will lose my car as I need it to get me to work/hospital appointments. Does my Government expect me to take infected dirty syringes onto a bus? My health will only deteriorate. There is no cure for severe haemophilia. Government policy gave me hepatitis C yet they want to reassess me for DLA.”

That took some time, but I do not apologise. It is right that people who have had such experience should have their voices heard.

I referred earlier to legislation. So complex are the issues and so long have they gone on that legislation is necessary. I attempted to carry through this House the Alf Morris Bill which had made its way through the House of Lords. Unfortunately, we ran out of time. In March last year I succeeded in introducing a ten-minute rule Bill, which went a little further than the report. For example, it included the need for an NHS compensation card, which would lead to priority treatment. Following that, I had a meeting with the then Leader of the House, where it was made clear to me that time would not be made available. I am not sure that he shared the sense of urgency that I tried to impart.

I believe profoundly that an apology, important though it is, is not enough. Compensation is appropriate. There ought to be closer working between the DWP and the NHS. We have many lessons to learn from Ireland and elsewhere. I acknowledge those who have worked so very hard on this issue, especially Lord Morris, whom we remember with great affection today. We owe it to them to deliver.

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[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.

[Mr Tom Clarke]

The Minister will recall that my right hon. Friend the shadow Secretary of State made some profound comments about the role of the civil service in dealing with these problems. Will she take time to respond to them?

[Jane Ellison]

I have noted the comments of the shadow Secretary of State. I can only speak from my own experience and say that in all the ways in which I have wished to consider this issue—those have ranged widely over the past year—I have been ably supported by my civil servants. Ultimately, this decision is a political one.

The issue needs to be resolved once and for all. I assure hon. Members that the Prime Minister, the Secretary of State and I continue to work towards that vital aim. I have said that however late Penrose reports, we will respond while the House is sitting. Inevitably, that will have to be an interim response. However, I hope that we can give the House some sense of the work undertaken over the past year and, at that time, respond to the direction of travel signalled in the all-party group’s report and the work of my right hon. Friend the Member for North East Bedfordshire.

In conclusion, I want to say that this was an utterly appalling tragedy, which has caused grief and sadness to many people and their families, as we have so often heard. The Government must do right by those people on whose behalf so many Members have spoken today. I will take away everything that has been said, and as long as I am in my current office, I will continue to work to bring to Parliament the conclusion that so many Members have said they want.