Previous Section Back to Table of Contents Lords Hansard Home Page

I come now briefly to two further issues that we must not overlook today: first, the need for action now, at no great cost, to implement the Archer inquiry’s call for improved access for infected patients to NHS facilities; and, secondly, the inquiry’s recommendation on securing the financial future of the Haemophilia Society, faced as it is now by ever-increasing calls for help from NHS-infected patients. That this recommendation has not already been implemented has appalled noble Lords in all parts of the House, and I honour those who have made clear the depth of their concern, more particularly the noble Baroness, Lady O’Cathain, for her active support for restoring at once the punitive 70 per cent cut recently made by the Department of Health in the society's government grant.

23 Apr 2009 : Column 1611

The history of the contaminated blood disaster has been described as one of a “gallery of heroes” locked in an unequal struggle with terminal illness and the power of executive government. That is so, but there is also a “gallery of heroines” left widowed and bereaved by the disaster. I reflect in particular today on the courage, constancy and tireless campaigning of wives and mothers such as Harriet Bullock, Carol Grayson, Gaynor Lewis, Liz Rizzuto, Sue Threakall to whom I know my good and noble friend Lord Corbett will refer, Colette Wintle and, of course, the noble Baroness, Lady Campbell, all of whom belong in that gallery.

In none of the many parliamentary campaigns I have been closely involved in over 45 years in Parliament—even thalidomide, vaccine damage, and those nearly 40 years ago for statutory recognition of dyslexia and autism—have I had so strong a sense that no campaigning should ever have been necessary to right the wrongs suffered by the haemophilia community. Support for their cause, as I believe this debate will demonstrate again, is everywhere seen today as an issue not of right and left, but of Right and Wrong.

I conclude now in renewed appreciation of the nobility and humanity of my noble and learned friend Lord Archer and his inquiry team. Humanity was never more humane. I beg to move.

11.56 am

Lord Thomas of Gresford: My Lords, it is my privilege to be the first to congratulate the noble Lord, Lord Morris of Manchester, on securing the debate and to pay tribute to him for his dogged and determined campaign over 45 years in Parliament on behalf of disabled people. He was appointed the Minister for Disabled People—the first of anybody to achieve that post anywhere in the world—and in this House he has continued to show exactly the quality of the advocacy that he has for disabled people. He is much to be congratulated.

I also congratulate the noble and learned Lord, Lord Archer of Sandwell, the noble Lord, Lord Turnberg, Ms Judith Willets and Dr Norman Jones for their very thorough examination of the issues involving the examination of some 300 statements that were sent to them, the examination of 64 witnesses who gave evidence orally and something like 20,000 documents. As the noble Lord, Lord Morris, said a moment ago, this is not an issue of right or left; it is not a party matter. Nevertheless, the Government have resisted the appointment of a statutory public inquiry. They no doubt will explain why they have done that in due course, but it is deplorable that the Department of Health refused to provide witnesses for public examination and cross-examination.

There are a number of unsatisfactory aspects. Since it was not a statutory inquiry under the Inquiries Act 2005, the noble and learned Lord, Lord Archer, did not have power to compel witnesses or to call for papers. Counsel was not provided to the committee to assist in the marshalling of evidence and to cross-examine witnesses. In particular, there was no funding other than private donations, which public spirited people—or a person, I believe—put forward to fund the inquiry.

23 Apr 2009 : Column 1612

It is true that the Department of Health did supply documents, but many of the relevant documents had been destroyed under what was described as the 10-year rule. In its report, the inquiry makes it clear that it was never able to get to the bottom of that. Nobody from the department gave a public explanation. It appears to be a serious error of judgment; that is the only explanation that has ever been given, but it was not given to the inquiry. There has been some suspicion that this has been the reason for resisting a public inquiry and failing to co-operate in the inquiry of the noble and learned Lord, Lord Archer. I await an explanation from the Minister.

The noble Lord, Lord Owen, who gave evidence to the inquiry of the noble and learned Lord, Lord Archer, was of the view that the documents might have been destroyed a long time ago in a desire to draw a line under the whole story. The absence of a statutory public inquiry in this country contrasts strongly with what is happening as a result of an opinion of my friend the noble and learned Lord, Lord Mackay of Drumadoon. The Scottish Government are setting up a statutory inquiry, and no doubt we shall have a full report from them in due course. I only hope that it will match the thoroughness of the report of the noble and learned Lord, Lord Archer.

I see that it may be difficult for the medical community to keep up with the development of new and newly identified diseases. These issues have come forward over a period of time. However, the report demonstrates that there has been clinical and research confusion. There has been limited and contradictory advice given to practitioners. One must have some concern that lack of resources has affected the care of patients and the caution that should have been taken with them. It is undoubtedly the case that contaminated blood contributed to the wider dissemination of these illnesses: hepatitis in its various forms, HIV/AIDS and, latterly, as the noble Lord, Lord Morris, pointed out, vCJD.

One recipient’s widow is a friend of mine; his name was Graham. Graham had only three treatments with blood products. The last was in 1971 when he was only 13 years old. He was then admitted with a bleed in December 1984. By January 1985, he had seroconverted and contracted HIV and non-A, non-B hepatitis, currently known as hepatitis C. Graham was not informed of his HIV status for a considerable time—years after those who were treating him had realised that he was suffering from it. He suffered from numerous minor ailments, including flu-like symptoms, extensive rashes, exhaustion and depression. In addition, he suffered life-threatening illnesses including severe anaemia. When he learnt of the nature of his condition, he was unable to have any more children. Fortunately, he had had one daughter before the condition had developed, but he was unable to have any more children for fear of infecting them and his wife.

His job was affected, and he lost it. After redundancy, he could not fill in application forms without disclosing his status, so Graham took self-employed locum work and lost many days’ pay going to hospital appointments. He could not explain to his employer why he was absent so often, and he eventually lost that work. The noble Lord, Lord Morris, referred to insurance, and

23 Apr 2009 : Column 1613

Graham could not get life cover. His family and social life were severely curtailed. Perhaps the worst part was that he had to lie about his condition to neighbours and friends, and even to his own daughter; of course, at that time there was a great fear of the conditions from which he was suffering.

He died at the age of 40 in 1998. Samples of his body were sent to the National CJD Surveillance Unit without his wife’s knowledge. Four days after his death, she was told by the unit, “Well, haemophiliacs make an excellent model for this kind of study”. She was refused an inquest and did not qualify for the Skipton payments or, indeed, any other payments, because her husband had died too soon. Therefore, she did not qualify for the reasons to which the noble Lord, Lord Morris, referred. She spent four years going through independent review of the treatment and ombudsman inquiry and suffered post-traumatic stress disorder. I have mentioned this case to illustrate to your Lordships the devastating effect of what happened to Graham before he was 13, and the impact that it had on him and his family.

The report of the noble and learned Lord, Lord Archer, sets out the chronology of events, which demonstrates time and again a lack of urgency and shows how much the Government were in denial. Despite targets to ensure self-sufficiency in blood products in the United Kingdom within two to three years being set in 1975 by the then Minister, the noble Lord, Lord Owen, that goal was never met either in his timeframe or anybody else’s. Ultimately, by 1990, the attempt to make this country self-sufficient in blood products was abandoned. Government continued to rely on the importation of blood products from the United States in spite of warnings. For example, in 1983 Dr Galbraith, the director of the Communicable Disease Surveillance Centre, warned of the nature of US blood products. When, in that same year, Susan Douglas wrote an article in the Mail on Sunday referring to killer blood from high-risk donors, she was reported to the Press Council, which concluded that her article was alarmist and extravagant. Therefore, you can see the attitudes of resistance and denial that existed at that time.

When the United States introduced regulations to exclude donors from high-risk groups for plasma collected after March 1983, the old stocks were not withdrawn, either in the United States or in the United Kingdom. The noble Lord, Lord Morris, referred to Crown immunity as the cloak behind which the government department concerned hid. It is always possible not to use Crown immunity. Negligence could not have been proved unless it was shown that there was a failure by the standards of care as known at that time. The law does not require that today’s knowledge about medical matters be imported back to that time. However, by using Crown immunity, the government department concerned was able to avoid an investigation into whether, by the standards of that time, there had been negligence in what had occurred. It is not too late. If the Government chose to waive Crown immunity dating back to that time, I am sure that it would be possible for actions to be brought. However, I do not suppose that they will.

23 Apr 2009 : Column 1614

The lack of participation by the Department of Health in the inquiry of the noble and learned Lord, Lord Archer, indicates to me a worrying complacency and an assumption that no other disease communicable by blood products will ever again emerge, but vCJD emerged after the problem became known. Who knows what other disease may emerge in the future which may cause the problems that I have discussed?

We on these Benches support the recommendations of the report, particularly that there should be a statutory committee to advise Government on the management of haemophilia in this country, with patient and family representation. We agree that there should be direct financial relief for those who have been infected and for their carers, on whom much of the burden so often falls. We also agree that there should be free access to National Health Service benefits. We accept that there should be government assistance for access to insurance.

The noble Lord, Lord Morris, reminded us that this whole thing has been described as a treatment disaster, as, indeed, it was. It behoves this Government and any future Government to take the report of the noble and learned Lord, Lord Archer, seriously on board and to implement it.

12.09 pm

Baroness Campbell of Surbiton: My Lords, I thank the noble Lord, Lord Morris, for bringing forward this debate on the report by the noble and learned Lord, Lord Archer, who I am thrilled to see in the Chamber today; I look forward to hearing what he has to say.

We know that the noble Lord, Lord Morris, is a tireless campaigner on behalf of people with haemophilia, especially those tragically affected by contaminated blood products. I declare an interest. On 19 December 1993, my first husband, Graham Ingleson, died, 18 months after his brother Anthony. They both lost their lives as a result of receiving contaminated factor 8 blood products in the mid-1980s. This inquiry is not just about those who were infected with contaminated blood products; there is another strong, underlying story. It is a story of mothers, fathers, sisters, brothers, wives, husbands and friends who continue to endure the effects—psychological and economic—of seeing their loved ones die or become gravely ill. We have needed this inquiry for a long, long time and now we even more need a response from a Government who have been too silent on this issue.

Noble Lords will know from reading the report that the UK Haemophilia Society has campaigned for a public inquiry since 1988. However, successive Governments have declined to establish a statutory public inquiry. On 12 January 2006, the noble Lord, Lord Warner, then Minister of State at the Department of Health, put it clearly when he said in reply to a Question that,

Fortunately, we are blessed with the dogged tenacity of the noble Lord, Lord Morris. He knew that there was light to be shed on this issue and he knew that the

23 Apr 2009 : Column 1615

story had to be told. He believed that a public inquiry should be held for three simple reasons: first, to learn lessons for the future; secondly, to go some small way to help victims and their families to articulate their stories and to gain public recognition of their plight—truth and reconciliation are often at the heart of the pain; and, thirdly, to make recommendations that would give practical help and assistance to those living with the effects of treatment contamination.

In February 2007, the independent public inquiry was launched under the considerable weight of the noble and learned Lord, Lord Archer. Even though it had no statutory power to compel evidence from the Government or the health service, it heard from 300 witnesses and examined over 20,000 documents—that is a lot of documents. Before us today, we have a remarkable report. It is born out of selfless commitments from solicitors and experts, the majority of whom gave their time and expertise free of charge.

The fact that this report was produced independent of government and the Haemophilia Society means that it is truly independent. The report states that there is absolutely “no hidden agenda”. For many of us this is probably the most significant point and only adds to the report’s power and importance. In it, noble Lords will read about the scandalously slow reaction by successive Governments to the need to safeguard blood products imported from the United States during the 1980s. This meant that we failed to protect nearly 5,000 people who died or are now living with HIV/AIDS, hepatitis C or CJD. The noble Lord, Lord Winston, was absolutely right when he said that this has been,

“the worst treatment disaster in the history of the NHS”.

He should know.

UK self-sufficiency in producing blood products could have been established much sooner than it was. It took five years in Ireland, but 13 in England and Wales. This was just one of the scandalous ways in which the state reacted to the lethal health risk of contaminated blood products. Noble Lords will have read again and again throughout the report of the inappropriate and simply wrong responses to this situation.

However, it is impossible to relive those years. Quite frankly, we do not want to keep reliving them. The noble and learned Lord, Lord Archer, is right when he says that we must now look ahead. The purpose of his inquiry was to help the truth to surface and to learn important lessons for the future. It does not seek to apportion blame.

I am hoping that the recently withdrawn amendment tabled by the noble Lord, Lord Morris, to the current Health Bill, seeking to establish a statutory committee to provide and give advice to government and haemophiliacs on services and to help those still suffering from the results of contaminated blood products, will return at Report stage and will be supported. The amendment would implement one of the inquiry’s recommendations. Given the decades of injustice, the amendment offers one small practical way to right a great wrong and it sends out a strong message to those who are waiting for a little more. I should be interested to hear the Minister’s view as to whether this recommendation, which is not costly, and others in the

23 Apr 2009 : Column 1616

report will gain the support of the Government. I am also looking forward to the possibility that the Minister will give us a timeline.

When the amendment was debated in Grand Committee, I explained to noble Lords present that every year, on the anniversary of my husband’s death, I visit the church of St Botolph without Bishopsgate in the City of London. It is a beautiful church and noble Lords should visit it. At the back is a small memorial book. In it you will find the names of those haemophiliacs who have died as a result of contaminated blood products. Every year, new names are entered in the book. Haemophiliacs living with the consequences of lethal treatment require the best information, the best support and the best advice. The proposed statutory committee can provide that. The Government have the opportunity to show at last that they recognise the extraordinary plight of haemophiliacs. I hope that they and noble Lords will feel able to support the amendment, should it be laid again at the Report stage of the Health Bill.

12.20 pm

Lord Archer of Sandwell: My Lords, I add my congratulations to those that we have already heard from the noble Lord, Lord Thomas, and the noble Baroness, Lady Campbell. I wonder whether at this point it is also in order to add my congratulations on my noble friend’s forthcoming election as a fellow of the Royal College of Physicians. It is proper recognition of a lifetime spent in the service of those who suffer.

I express my felicitations, too, on the timing of this debate. Those responsible in government needed time to read and consider our report, and to consult and discuss it, so we never expected an immediate reaction from the Government. Of course, a listening Government are an asset only if they are also a reflecting Government, and their value diminishes if they then become a dithering Government. It is nine weeks since we reported, and my noble friend’s timing of this debate cannot be faulted.

I express my thanks, too, to the noble Lord, Lord Thomas, and the noble Baroness, Lady Campbell, for the kind things that they said about us. I speak on behalf of my colleagues on the inquiry in saying that we greatly appreciated the encouragement that we received both during the inquiry and since we reported.

Our report could have been more informative if we had been appointed 20 years ago—a point already made by contributors to this debate. Memories would have been fresher, the principal participants would still have been alive and all the records and documentary evidence would probably still have been available. That is the position, which it is too late to alter. We had to deal with the situation as we found it and, although the Government continued the policies of their predecessors in declining to provide oral evidence, it is fair to say that they tried to assist us within the boundaries that they had established. Even this week, we were offered documents that until then had been withheld. Sadly, of course, it was too late to refer to them in our report.

It is always a pleasure to have the ear of my noble friend Lady Thornton. Once again, I suspect that she has been assigned as wicket keeper when it is expected

23 Apr 2009 : Column 1617

that there may be some fast bowling. The Government’s strategy is, I suspect, transparent. There was a need for a Minister on the Front Bench who is cool and persuasive, who is known for her compassion to those who suffer and who bears no responsibility for any aspect of the tragedy.

It was inevitable that in reporting on this sad history we would feel compelled to comment on some of the decisions that were reached or on decisions that were not reached at all when it mattered. We tried to make allowances for the fact that the past is another country; we are judging from a body of knowledge that was not available at the time, as my noble friend Lord Morris pointed out, when perspectives were very different. The noble Lord, Lord Thomas, properly drew our attention to those limitations; we were very conscious of them. We did not consider it our major task to apportion blame, as the noble Baroness, Lady Campbell, pointed out.

The past cannot be changed. It may sometimes be rewritten but the reality remains with us. What is still open to change is the future, which remains open in two ways. First, we may learn lessons that help us to ensure that we do not make those mistakes again and, secondly, although we cannot prevent past mistakes, we may be able to mitigate the consequences. The effects of infection not only on patients but, as the noble Baroness, Lady Campbell, pointed out, on their families are almost impossible for those of us who have not suffered to appreciate. We had a moving example from the noble Lord, Lord Thomas.

For that reason we invited those who read our report to consider first how to ensure that future Governments have the maximum available expertise and experience. Among our recommendations, as earlier contributors to the debate pointed out, is a proposal for a statutory advisory committee, including clinicians, a representative from the Department of Health and, at least as important, patient representation—members from the Haemophilia Society and from other bodies who represent patients. Patient participation in relation to both individual treatment and national policy was conspicuously lacking when this tragedy occurred. Since then we have heard of the success achieved in Ireland, Canada, Japan, Thailand and the USA. Of course, there is a need for the very best expertise available, but that is enriched by an input from some of those who have actually been there.

I seem to remember that Aristotle said somewhere, although I have not been able to trace it in the past few days, that if you seek an opinion on the building of a house you should ask two people—the architect and the person who has to live in it. The second way of mitigating the consequences of the tragedy, as my noble friend Lord Morris reminded us, is to consider the financial position of someone who is already affected with haemophilia and is then affected with hepatitis C, HIV or both. In addition to the loss of the normal amenities, of which we have already been reminded, the patient is faced with additional expenses, such as extra heating, special diet, assistance with transport and domestic help and additional premiums for travel and life insurance. As living expenses escalate, earnings may well diminish. The patient may lose not

23 Apr 2009 : Column 1618

only earning capacity but such additional benefits as pension rights. Families who formerly enjoyed good living standards are forced to live on benefits.

The present Government have been at the receiving end of a great deal of criticism in this case, but we have to remember that we are considering successive Governments. The details are set out in our report as to the provision that some Governments have attempted to make to alleviate financial hardship, but they compare poorly with the provision available in Ireland, Canada, New Zealand and Italy, to cite just a few examples. In most cases, that provision came about by way of settlement of claims that were being pursued in the courts. Part of the indignation felt here is that it was necessary to initiate proceedings in the courts. We believe that such action is not the appropriate way of approaching this question.

Next Section Back to Table of Contents Lords Hansard Home Page