Contaminated Blood

Anne Main Excerpts

Thursday 15th January 2015 Commons Chamber

[Alistair Burt (North East Bedfordshire) (Con)]

I beg to move,

That this House supports a further review of the circumstances surrounding the passing of infection via blood products to those with haemophilia and others during the 1970s and 1980s; notes the recent report from the All Party Parliamentary Group on Haemophilia and Contaminated Blood into the support arrangements provided for those who contracted blood-borne viruses as a result; also notes that the Penrose Inquiry into these events will shortly be publishing its findings in Scotland; further notes that those who contracted viruses and their partners and dependants continue to be profoundly affected by what happened; therefore welcomes the Prime Minister’s commitment to look again at this issue; and calls on the Government to respond positively to the APPG report and engage actively with those affected with a view to seeking closure to these long standing events.

I will do my very best to stick to the rules, Mr Speaker, as I know other colleagues wish to speak. There is a lot to say and interventions matter, but I will do my level best. My first task is to express my thanks to a number of people. First, I thank members of the Backbench Business Committee for being good enough to allow this debate. Secondly, I thank the large number of colleagues who supported the calling of the debate: those who attended the Backbench Business Committee last week; the many others who have signed today’s motion; those who have been in contact with me; and those other colleagues closely involved. Thirdly, I give a big thanks to the all-party group on haemophilia and contaminated blood, particularly my hon. Friend the Member for Colne Valley (Jason McCartney) and the hon. Member for Kingston upon Hull North (Diana Johnson), not only for their support today, but for the immense amount of work they have put into this issue over a number of years.

Fourthly, I thank a small group of colleagues who have worked particularly closely with me: my right hon. Friend the Member for Cardiff Central (Jenny Willott); the hon. Member for Foyle (Mark Durkan); my hon. Friend the Member for Stratford-on-Avon (Nadhim Zahawi), who has been immensely helpful through his company; and a number of others. May I also welcome the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) to her place on the Front Bench? She and I have had a number of conversations about this issue since she was appointed to her role and she has been concerned and engaged with it. We have worked with No 10 and the Prime Minister’s advisers directly, of which more later.

I am also acutely conscious that all of us follow in distinguished footsteps we alas hear no more, from Peter Archer or Alf Morris, or, most recently, our friends Jim Dobbin and Paul Goggins, who respectively chaired and led the last debate held in Westminster Hall in October 2013. Paul, who had supported his constituents over a 16-year period before his death, is a particularly hard act for any of us to follow. In this regard, Paul’s great friend the shadow Secretary of State for Health is here to speak for the Opposition, and that is particularly welcome and important, emphasising how personally many of us have become engaged with the issue and how it has become one where both the Government and the Opposition feel a collective burden of responsibility for the events of the past. I hope they share a similar determination to reach a more satisfactory conclusion.

Like almost any of us here today, I could fill most of the three hours allocated with ease, but that is not the way this debate must proceed. I will therefore briefly outline a history that we and those watching are wearily familiar with, and move on to discuss why the debate is taking place today, what our main issues are and what our hopes may be. I will, where possible, illustrate with some of the words of those who have been in contact with us, as this is a debate for them and for their voices.

First, let me read from the opening to Lord Archer’s report, just to set the scene. He said:

“Throughout the 1970s and the first half of the 1980s, many in the UK who suffered from haemophilia were treated with blood and blood products which carried what came to be known as Hepatitis C, and some 4,670 patients became infected. Between 1983 and the early 1990s some 1,200 patients were infected with HIV, also through blood products. These infections had caused at least 1,757 deaths in the haemophilia community by the time this Inquiry started in February 2007, and more have occurred subsequently.”

Those figures can, of course, be updated for current circumstances. He continued:

“By the mid 1970s it was known in medical and Government circles that blood products carried a danger of infection with Hepatitis and that commercially manufactured products from the USA were particularly suspect. By the mid-1980s there were warnings of a similar situation in respect of HIV. But the products continued to be imported and used, often with tragic consequences. The reasons for the chain of decisions that led to this situation, and the alternative options which might have given rise to a different outcome, have been debated since that time.”

Yes indeed they have.

[Mrs Anne Main (St Albans) (Con)]

It is fantastic that my right hon. Friend has brought this debate before the House, and I was pleased to support him at the Backbench Business Committee. Does he recall that when we made our presentation to the Committee its members were surprised that this was still going on, after such a long time? That is the crux of today’s debate: now is the time.

[Alistair Burt]

My hon. Friend is right about that. I will go on to say why this debate is happening today, and that is one of the reasons. This issue has not gone away, and even more colleagues are now aware of it.

Since the Archer report there has been some positive recognition by the state of its responsibility. Over the years, efforts have been made for financial provision, but a complex and incomplete patchwork has been the result. Some people have been left behind—those bereaved and dependants in particular. Treatments for the severest infections have improved markedly, which has, in general, of course, been good news, but they also bring their own ironic consequences in giving longer life to those with originally no expectation of it and not always a quality of life for which we would all hope.

Efforts by the state to redeem itself have been hampered by a chronic inability to admit the past, to ensure that all the material was available for public scrutiny, and to give an opportunity to family members to ask the question that any one of us would need to ask: why and how has my loved one died? Its evasion of a public inquiry, the loss of key papers, the slow drawing out of what paperwork there was, and the failure to submit to questioning have left a mark of suspicion that lasts to this day.

Before I turn to the why-now question, let me dwell a moment on the scale of this tragedy. One of the most moving speeches heard in this or any other Session of Parliament was when the hon. Member for Liverpool, Walton (Steve Rotheram) read out, unforgettably, the names of the Liverpool 96. He did so to let the world know that behind the tragic statistics that the 96 had become were people with names, lives and hopes. Consider this: for me to do the same would mean that I would be reading out nearly 1,800 names. We will hear some of their stories today, but I ask the House to reflect on the scale of this. In terms of death toll, this is the 15th biggest peacetime disaster in British history in which the black death, at 3.5 million, is the worst. The awful Aberfan, the name of which we all know, is but the 142nd, with 144 lives lost. Contaminated blood has killed 12 times more.

--- Later in debate ---

[Mrs Anne Main (St Albans) (Con)]

Today’s debate has been very well informed, and I pay tribute to my right hon. Friend the Member for North East Bedfordshire (Alistair Burt) for bringing it to the House. This is about justice, and justice delayed is justice denied. Justice that has been delayed for such a long time is really no justice at all.

It has been noted that we are coming up to the general election, and I know that the NHS will be on the front of many of our leaflets. Our political literature will talk about the NHS and what it means to us and to our families, and about our hopes for it and the amount of money that we hope to spend on it. I do not want contaminated blood to be a subject of debate only for today.

This is about the trust that we and our families put in the NHS, but that trust was broken many years ago for many families, including one that I want to talk about today. It is important to recognise that we expect the NHS to give us the best medical treatment and advice available at the time. Many Members have pointed out that that advice was often ignored or pushed under the carpet; it was covered up even though it was known about. That is simply not good enough.

This tragedy has affected multiple members of many families. It has affected the quality of people’s lives and their aspirations over many years. People have described the situation to me as being forced by the state to join a club of whose existence they were unaware with rules that they did not understand, and being denied the ability to call it to account. People, including children, were unaware that they were being subjected—that is the right word—to treatment that was not in their best interests or appropriate for their condition. That failure by the state has been left to fester for too long, and it has left them with a legacy that is a disgrace and a stain on this House and on the NHS. Whoever is in the next Government, if they have used the term “NHS” on their leaflets, they must bear in mind that this debate today has joined the House in saying that we want better for those families.

I concur with what my right hon. Friend the Member for North East Bedfordshire said about reading out 1,800 names. In fact, we could read out the names of all the family members and carers involved. They are all victims; they have all lost a huge amount. We should not read out all those names, however, because many people do not want their names linked to the debate and made public. I am going to talk about my constituent, Nicola Enstone Jones. I asked her permission to use her name today, because I know that many people do not wish to have the stigma of being associated with all this, and with having to go cap in hand to get their rights recognised. I should like to give the House a flavour of some of the hardships that Nicola’s family have had to endure, and of the unfairness of a system that has no transparency.

Like many other Members, I have campaigned for Equitable Life victims. We have had many strong debates in the House about whether people’s estates should be included when the compensation payments were being made and about coming up with fair formulas. I have not heard the same zeal applied to this subject, although this is about people losing their lives, not their livelihoods. This is about people losing their hopes and dreams—just as the Equitable Life people did—but often losing them at a very young age.

I want to give Nicola’s story a brief airing today. It mirrors many of the stories that we have heard today, and it is important that we record as many of them as possible, because they show the unfairness, the anomalies and the degree to which families have to scrape to get a degree of justice. We have heard mention of very young children being affected, and Nicola was diagnosed with haemophilia at the age of seven or eight. In 1978 and 1979, she had tooth extractions—not exactly a hazardous thing—and treatment for a broken arm. In 1980, after a tonsillectomy, this young child was given factor VIII. It was by then known to be contaminated. Since that very day, her health has deteriorated, with symptoms associated with hepatitis C. Despite her mother’s concerns, she was told at the time that her daughter’s problems were psychological. Things were covered up. Throughout the years she continued to receive factor VIII for other operations and her health was always poor.

Over the years Nicola has lobbied me, as other hon. Members have been lobbied. When the Skipton Fund was announced, she was told that she could apply, but because in 1997 a consultant had stated that the virus had cleared, 17 years after she had been infected, she suddenly did not seem to meet the criteria. She has been turned down “on the balance of probabilities” by the Skipton Fund because her condition had been cleared for six months. Her mother, Mrs Enstone Jones, lived with that all those years, but because of a brief period when the virus was thought to have cleared, Nicola did not meet the criteria. She has been let down by the Skipton fund.

The report which has been mentioned so many times in the Chamber today stressed that the fund—the “third arm”, as I think it was called by the hon. Member for Wythenshawe and Sale East (Mike Kane), whose predecessor, Paul Goggins, worked tirelessly on the issue—is creating a barrier to justice, not facilitating justice. We must have a better system so that people do not feel that they have to jump through hoops, justify themselves, or make early applications in order to be able to go on holiday or get essential funding. The funds set up to deal with the issue are not dealing with it and, if anything, are trying to avoid dealing with it if they can and keep money back.

We do not wish to save the state money because, as the right hon. Member for Cardiff Central (Jenny Willott) said, we are speaking about a relatively small number of people. Let us get the matter sorted. Let us put in place a fair system. Let us make sure that all the other Enstone Joneses and all the other names that we cannot mention today for reasons of privacy do not feel that they have somebody acting against them, instead of acting for them. If nothing else comes of the debate in the House today, we should remember not just the NHS, but what the NHS means to those affected and their families. They trusted their health to the NHS many years ago, and the issue is as relevant today as it was then. Any of us who campaigns on the NHS in a few months’ time should remember that and pledge to do something about it if they are part of the next Government.