Contaminated Blood

Diana Johnson Excerpts

Thursday 15th January 2015 Commons Chamber

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

May I start by thanking the right hon. Member for North East Bedfordshire (Alistair Burt) for securing this debate and for all his incredibly hard work over the past year or so in championing this cause? I also thank him for his kind remarks about the late Paul Goggins, the late Jim Dobbin and the late Lord Morris.

I co-chair, along with the hon. Member for Colne Valley (Jason McCartney), the all-party group on haemophilia and contaminated blood, and it has been a privilege to be involved in putting together the report. I think I speak for both of us when I say that many of the contributions made by the nearly 1,000 people who gave evidence to the APPG were harrowing and at times very moving. The substantive report would simply not have been possible without those submissions. They are quoted throughout the report and highlight in vivid detail how the current system of support is not fit for purpose. Our report is clear that there needs to be dramatic change to the level of support people get, and the way in which it is managed, before we can even hope to achieve closure for these people. Needless to say, my biggest thanks go out to the whole community of people who have been affected by this tragedy.

In addition, I thank YouGov and the hon. Member for Stratford-on-Avon (Nadhim Zahawi), who generously helped put together the survey; the Haemophilia Society, which provides the all-party group’s secretariat, and particularly its chief executive, Liz Carroll, without whose help we could not have conducted the inquiry or produced and printed the report; and Fiona McAndrew and Thomas Stephens, who both worked so hard to put the report together. I am also pleased that my right hon. Friend the Member for Leigh (Andy Burnham) is on the Labour Front Bench, and that the Secretary of State for Health and his Minister, who has direct responsibility for this area, are also present.

I want to highlight two matters. First, I want to clarify the issue about the number of people infected with hepatitis C. Since we concluded our inquiry, several people have got in touch about the figures. We state at the beginning of the report that, historically, it was estimated that more than 30,000 people were infected with the virus during the relevant period, and the figure was given in the Government’s 2011 review of support for those affected. Figures for the numbers affected by haemophilia derive from the United Kingdom Haemophilia Centre Doctors Organisation, and those for the number of people without bleeding disorders who are infected are estimates from an academic study.

I want to make it clear that no support package would extend to anywhere near such a number, because many of those originally infected have—unfortunately and sadly—died, while some cleared hepatitis C at the acute stage and others, especially those infected through a blood transfusion, would find it very difficult to link their hepatitis C infection with a single period of NHS treatment and so could never qualify for help in practice. It would be a shame if any Government used such a figure to argue that it is too costly to expand support. In practice, trust-based assistance would cover only a much smaller number of people—fewer than 6,000—and any consideration of the costs of extending the support package should take that into account.

Secondly, I want to highlight the case of my constituent Glenn Wilkinson, who was infected with hepatitis C from NHS-supplied blood products. Without Glenn, I would never have become involved in the all-party group. He is a resolute and determined activist, and he has campaigned vigorously for more support for those affected. We all owe him a huge debt of gratitude for keeping on going, and for fighting for what is right.

As a minimum, Glenn would like a number of measures taken to reach a full and final settlement for all. I will set out what he has told me in the past few days and how it fits with what we said in the report. First, he wants to remove the distinction between stage 1 and stage 2 hepatitis C, because the majority of people in stage 1 do not receive ongoing payments. The distinction is based on a decision that those in stage 1 are not in a state of ongoing need, but our inquiry clearly showed that they are in need. The accounts we received show that the Government need to rethink the current system, which denies ongoing support to those in stage 1. We therefore recommend that the Government provide ongoing payments to all people with stage 1 hepatitis C at a level to be set by a public health doctor.

Secondly, Glenn wants all widows and family members of deceased infectees to have equal access to financial support, irrespective of the infection that caused the virus. We recommend that all widows of hepatitis C infectees, who are currently denied any ongoing support, get the same support as those of HIV infectees. We also recommend that the families of deceased hepatitis C infectees should get the same support for at least nine months after the primary beneficiary dies, as is already the case for those with HIV. Thirdly, Glenn wants the support to be simplified and administered by just one trust, rather than by the five trusts that currently exist. Our report recommends that the Government review the support provided, because it is a mishmash and a hotch-potch.

[Kerry McCarthy (Bristol East) (Lab)]

I congratulate my hon. Friend and other Members involved in producing this excellent report. One of my constituents affected, Councillor Bill Payne, has praised the report. On her point about the piecemeal nature of the support available, I must say that I was really struck by that when I read the report. It is difficult enough to deal with the health care system and the welfare system without the additional burden of bureaucracy, and it seems that some of the organisations involved are not very good at responding to people’s needs, so I agree that that needs to be addressed urgently.

[Diana Johnson]

I am grateful for that intervention. I think I should be allocated an additional minute that has not been put on the clock. [Interruption.] Thank you, Madam Deputy Speaker.

Fourthly, Glenn told me that he thinks it would be fair to see priority access to NHS treatments for those affected, and that is rightly one of our recommendations. He also wants automatic passporting to employment and support allowance and disability benefits for all infectees. Because this is an all-party group, that recommendation is not included in the report, but I think it should be considered by the Government. Just today I received a message from someone who said that the money they get from one of the trusts is now being spent on paying the bedroom tax—I am sure the Minister does not think that that is what trust money should be used for. Once the Penrose inquiry is published, we hope there will be no further delays, or that any delays will be minimised in any inquiries that the Department of Health and Government need to make.

I will end with a quote from a person I think was very brave to come forward. She is an HIV infectee and the widow of an HIV-infected husband:

“I refuse to be a victim. Despite everything I cherish my life and count my blessings. I have faith that this will end soon and maybe then, my talents, intelligence, spirit, sense of justice, experience and energies can be better directed at contributing towards and being part of a better society. I pray for the day when this Trust is out of my life. I do not think that is much to ask.”

--- 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 ---

[Huw Irranca-Davies]

I agree very much with my hon. Friend. We need a UK solution because this is a UK problem, so work must be done in concert with the devolved Administrations and Governments.

My constituent says that in 1982:

“We were called into consultant’s office, at the…Hospital…My future wife was pregnant and we were strongly advised to have a termination. However, he was not specific about reasons why, other than the possibility of our child either having or carrying haemophilia, so we refused.

1983—Our son was born and they wanted to take a blood test from him. It was after this they told us of my…HIV infection, at this early stage they had no idea what it entailed. We were advised not to mention to other patients at the hospital and to refrain from sexual intercourse until they knew more. Thankfully our son did not have the virus. Feeling uncertain about the future, it was awful to be told we had to keep this to ourselves. At this time it was very much publicised in the media and friends of ours, who knew of my Haemophilia began questioning us on whether or not I had been affected. Suffice to say I felt I was on borrowed time and on my own admittance, went off the rails and neglected my son and new wife.

1985—My wife fell pregnant again and convinced I was going to die sometime soon, the fear and uncertainty about the future made us feel we had no option but to have a termination.”

He goes on to say that a support group was set up and:

“We began attending meetings with the group and felt better for the support but sadly the participants began dying at an alarming rate and it just made the situation worse.

1991—My brother, who also had Haemophilia and HIV passed away. Prior to this we had undergone clinical trials at the hospital and because we were brothers, he was given the placebo. The guilt I felt because I was taking the actual product and had survived was indescribable. The following year my second brother was tragically killed.

1993—In short I had given up, I knew I was going to die and felt I could fight no longer. I ended up in hospital with PCP pneumonia and my wife was told I had a matter of weeks. Even though I had given up on myself thankfully my family and the hospital staff hadn’t…and I eventually pulled through.”

He goes on to describe their three-and-a-half-year fight from 1995 to become the first couple with HIV status in the UK to adopt despite being told no, no and no again. He continues:

“2001—We were asked to consider adopting two more children”,

in addition to the one they had adopted during that period,

“a boy and a girl aged five and seven. We agreed and my wife finally had the family she had been craving. It was just after this, I was told I had also contracted Hepatitis C and possibly vCJD. Obviously we were devastated and all the old uncertainties we had pushed to the back of our minds pushed forward with force. However, all was not lost I was assured a treatment was available.

2002—Late in the year, I began treatment for Hepatitis C. We had been warned prior to this, I wasn’t going to be easy to live with but looking back now I feel this was an understatement. The two children we had living with us, had severe psychological problems and their behaviour just served to exacerbate the situation and subsequently the placement broke down.

2003—The two children went back into care and I found myself unable to cope with my grieving wife and my two existing children. I wasn’t in a very good place at this time and my wife and I came very close to separation. It was only because we had been together since we were sixteen and married at seventeen, we worked to stay together. The treatment reacted with my HIV drugs and I ended up in High Dependency with Pancreatitis. Following this, my wife had to sell her business as I was ill and unable to cope at home without significant help.”

[Diana Johnson]

My hon. Friend is making an incredibly powerful case, but what strikes me is that not only the individual is suffering but the family members are, too—the wife, the children and everyone else. It is striking.

[Huw Irranca-Davies]

Absolutely. It rips through not only the individual but their families, friends and every other aspect of their life.

I will continue to the end of my constituent’s story, as it goes on to this day. In 2004, the selling of the business meant that they had limited income and were unable to meet their bills. The debts piled up during their financial struggles and this put additional strain on the marriage. He goes on:

“2005—Our debt situation was spiralling out of control and as I felt a little better in myself my wife, who had studied for a degree while she was out of work could now get a…job as a care manager and she went back to work full time.

2006—We were asked about taking another child for adoption. Understandably following the breakdown of the last placement we were wary but agreed as everything seemed far better than it had been. It was in 2007 we had our second adopted daughter.”

From 2006 to 2010 they saved what they could to clear the debts they had accumulated since 2003. For the next few years, because of his deteriorating health, his wife had to return to part-time work rather than full time and the debts accumulated again. To bring this up to date:

“We have cleared our debts and with my wife working part time we are managing day to day to keep our heads above water. We have the basics we cannot save money or enjoy holidays. We keep away from past friends as I am well aware of how ill I look and do not want to answer their questions. I take a great deal of medication and am trying to live with the side effects, as is my wife!

The Macfarlane Trust had recently sent us a ‘disbursement of reserves’ form, requiring personal and in depth information to enable us to possibly have some money for home improvements. My wife and I felt it was an extremely unjust and unfair way of attempting to distribute funds amongst sufferers of HIV and their families. Not everyone would, or could qualify as they were in rental accommodation, or perhaps their home was not in need of improvements. It was causing a divide amongst the few that have survived this atrocity and we refused to complete it as any reserves we felt need to be distributed equally amongst those of us that are left. It seems the discrimination, separation and sheer lack of consideration for the primary beneficiaries is still very much in evidence.”

My constituents, like those mentioned in so many stories today, are asking not to have to go out with a begging bowl in complex situations, having to prove that they are worthy. This is an entitlement, not something to be begged for. They want some form of inquiry and a clear apology and there is a crying need for root and branch reform of the structures that have been put in place to help them. This is not working satisfactorily.

My constituents’ story will be reflected in the story of every person and every family affected. The disease does not simply affect them; it forces many into penury, marital difficulty and so many other social problems. It is time to sort this out once and for all.