Contaminated Blood (Support for Infected and Bereaved Persons) Bill [HL]
(13 years, 6 months ago)
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Lord Morris of Manchester
My Lords, I beg to move that this Bill be read a second time, and in doing so I wish to pay warm tribute to the officers and staff of this House who together have made it possible for me to be here notwithstanding the severely incapacitating effect of a recent injury. I have interests to declare, not pecuniary, as president of the Haemophilia Society and as the architect of the independent public inquiry into contaminated NHS blood and blood products presided over by my noble and learned friend Lord Archer of Sandwell.
I am grateful to all noble Lords who are here to take part in debating a profoundly important legislative proposal, conceived and drafted to give solace and support to arguably the most needful minority in Britain today.
A small and stricken community of barely 5,000 people, already disabled by a rare, lifelong blood disorder requiring continuous medical treatment—haemophilia patients—have twice been infected en masse by contaminated blood and blood products used in their NHS treatment. Over 95 per cent were infected with hepatitis C, and one in four with HIV. Of the 1,243 haemophilia patients infected with HIV, only 361—29 per cent—are still alive; and the much higher number of deaths from hepatitis C infection is still increasing. As of now, an estimated 1,994 haemophilia patients have died from being infected by contaminated NHS blood and blood products in this worst ever treatment disaster in the history of the National Health Service. If anyone disputes that assessment, they should look at the findings of distinguished statisticians that the disaster has involved the haemophilia community in a loss of life more savage in proportion to the numbers of people at risk than the Black Death in the mid 14th century. While stigma is less explicit today than the warning cross then scrawled on a plague victim’s door, it is no less cruelly oppressive in terms of social exclusion at a time of direst need.
Yet even the grievous and still ascending death toll does not tell the whole story of the suffering inflicted on the haemophilia community. As my dear and brave and inspirational friend, the noble Baroness, Lady Campbell of Surbiton, whose husband was among the haemophilia patients fatally infected, so movingly said in this House on 23 April, the history of the contaminated blood disaster is one of unspeakable suffering also for,
“mothers, fathers, sisters, brothers, wives, husbands and friends … seeing their loved ones die”.—[Official Report, 23/4/10; col. 1614.]
I want again today warmly to congratulate my noble and learned friend Lord Archer of Sandwell on parliamentary service of the highest distinction in conducting his independent inquiry into the disaster so skilfully and with such excelling integrity. I honour more than words can say both him and those who worked side by side with him in producing his landmark report: Dr Norman Jones, former emeritus senior consultant physician at St Thomas’s Hospital, and Judith Willetts, chief executive of the British Society for Immunology. No inquiry team could have possibly shown more commitment or have been more eminently qualified for the arduous task they so readily and ably undertook, entirely without remuneration.
For parliamentarians there can be no higher duty than to ensure just treatment and due care for people afflicted and bereaved by life-threatening medication supplied by the state; but as every participant in the debate knows, infected haemophilia patients, many of them now terminally ill, also suffer privation at a depth most other people can barely imagine. They speak to me day by day of no longer being able to work full time, if at all; of having been made uninsurable by the prohibitively expensive premiums demanded of them by insurers; and, among numerous other burdens, of costs generally being too high for them to cope with.
I am especially indebted to my noble friend Lord Corbett of Castle Vale for his help in enabling me to cope with the incapacitating effects of my injury in preparing for this debate. I am also indebted to the noble Lord, Lord Owen, from whom I received a movingly supportive letter this morning. Had he not been meeting commitments in Greece when the debate was announced he most certainly would have been here.
I shall comment on the clauses of the Bill as we proceed but, taken together, they transform the Archer report into the language of legislation. My purpose in working for most of last year’s Summer Recess to draft this measure—with unstinting help from Sarah Jones of the Public Bill Office—was to guarantee parliamentary time for this House to debate both the Archer report and the Government’s response to its findings.
Like other noble Lords who took part with me on 28 April 2009 in a debate to amend the Health Bill then before the House, I thought that we had an assurance very close to that guarantee from my noble friend Lord Darzi, then a junior Health Minister, speaking for the Government and having just announced that their response to the Archer report would be published at an early date. He went on to say:
“Furthermore, we will of course assist as far as possible in securing a debate on the Government’s response”.—[Official Report, 28/4/09; col. 143.]
Yet in the three months that then elapsed before the Summer Recess, there was no sign anywhere on the parliamentary horizon of a debate being arranged. Thus there was nothing precipitate in my decision to spend much of that Recess addressing the tasks involved in having this Bill ready for a First Reading in your Lordships’ House by 19 November. Indeed, it was then already nine months after the publication of a report the recommendations of which were vitally important to afflicted patients and the bereaved families on the day they were published in February last year.
The privation I have described among those afflicted is addressed in Clause 4, which deals specifically also with the crudely discriminatory treatment now of widows of infected patients in deciding whether they are eligible for financial help solely on the basis of when their husbands died, even where they died within two days of each other from exactly the same cause. The ending of that discrimination was one of the issues of longstanding concern to the Haemophilia Society and was strongly and repetitively emphasised in its evidence to the Archer inquiry. I mention it first today, in referring to Clause 4, because several of the widows excluded from help, who wanted very much to be here for the debate today, have contacted me to say that they simply could not afford the fares—and this at a time when just five NHS officials are seen to have been paid a total of £6 million over the past year.
Clause 4 addresses the whole range of compensation issues and has been welcomed as fair and balanced by commentators on social policy of wide experience, as was the Archer report itself all across the media. Everyone knows that there will be costs in giving full effect to the report, but there will also be priceless benefits in enabling haemophilia patients to live fuller and more fulfilling lives.
Moreover, the cost will be nothing even remotely approaching the £3 billion price tag put on the Archer recommendations by people, including commentators in the media, who had never even spoken to my noble and learned friend Lord Archer; but happily he is here this morning to speak for himself. Of course, costings should also include the high cost to the taxpayer of legal action by the Department of Health with such unsuccess.
Clause 1 creates a widely empowered statutory committee, with patient and family representation, to advise government on the management of haemophilia; Clauses 2 and 3 deal with blood donations and improving medical care; while Clauses 5 and 6 are about monitoring progress and the effects of regulations made under the legislation.
Turning to issues not dealt with in the Government’s response to the Archer report but worthy of close attention in the House, there is the spectre now of a third deadly scourge facing haemophilia patients. In response to Parliamentary Questions about the growing number of haemophilia patients known by the Department of Health to have been infected with blood from donors who have since died from variant CJD, I was told on the authority of the Chief Medical Officer that the risk of infection in such circumstances was purely “hypothetical”. That is demonstrably not the case today, a post mortem on a hepatitis C-infected patient having found variant CJD in his spleen. Ministerial statements on this further scourge urgently need updating. We also need to know how the Government now assess the variant CJD threat to the haemophilia community.
As the House knows, the Archer report was about more than the unmet needs of infected patients and bereaved families; it addressed also highly disturbing administrative shortcomings, serious omissions and a failure to inform Parliament why provision made in other countries is so much better than here in Britain. For example, there was no mention in the Government’s response to the Archer report’s findings of the behaviour of the Blood Products Laboratory in failing to comply with requirements of the Medicines Act 1968. This is a hugely important issue, as is that of the effect of using Crown immunity to avoid any question of legal redress.
The Archer report stated that the,
“BPL was rescued by Crown Immunity”,
adding that the BPL’s,
“existing plant continued production, relying on Crown Immunity to dispense with all the requirements of the Medicines Act, but was able to meet only about 40% of the national requirements”.
That can mean only that, by the use of Crown immunity, a relic of feudal England, the lives of countless haemophilia patients were put blatantly and gravely at risk.
The seriousness of this had already been underlined by my noble friend Lord Darzi. When responding to exchanges about thalidomide on 10 March 2009, he referred to,
“the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly”.—[Official Report, 10/3/09; col. 1059.]
Could there be any clearer text than that for condemning the BPL's use of Crown immunity to dispense with all the requirements of that renowned and vital statute?
From whom was the BPL rescued by its use of Crown immunity? First, of course, it was rescued from those afflicted and bereaved by the disaster. At a stroke, they were denied any right to legal redress, a denial made all the more cruelly unjust by refusals of successive Governments to hold a public inquiry. They were left with no hope of any independent assessment of where responsibility for their plight lay until the Archer inquiry was announced. Of course, the BPL was rescued from any danger of censure by the courts. Crown immunity was abolished by John Major in 1991, and the afflicted and bereaved ask why, since it is clear that the present Government had no intention of reinstating Crown immunity, they could not now review the claims of those from whom the BPL was rescued by that immunity.
The noble Lord, Lord Thomas of Gresford, who is much respected here and outside the House for his role in this policy area, said on 23 April that it would be possible for actions to be brought now, dating back as necessary, if the Government chose to waive Crown immunity. Thus the question today is whether the Government, opposed as they must surely be to restoring Crown immunity, have considered this possibility or will now do so. At the very least, Ministers could review the claims, where it is still feasible to do so, of the victims of contaminated NHS blood from whom the BPL was rescued by Crown immunity. If anyone thinks there is no way now of our being able to do any more to help the afflicted and bereaved, they should look at how the Irish Government found ways of compensating victims there by more than anything even contemplated by Ministers for NHS-infected patients.
In this regard, it must be made absolutely clear that the Government of the Republic did not, as stated in this House by my noble friend Lord Warner, briefed by and speaking for the Department of Health on 25 March 2004,
“set up their hepatitis C compensation scheme following evidence of negligence by the Irish blood transfusion service”.—[Official Report, 25/3/04; col. 796.]
That is untrue. It was again wrong for the Department of Health to have briefed Gillian Merron, then a junior Health Minister, to tell the House of Commons that,
“a judicial inquiry in Ireland found failures of responsibility by the Irish blood transfusion service and concluded that wrongful acts had been committed. As a result, the Government of the Republic of Ireland decided to make significant payments to those affected”.—[Official Report, Commons, 1/7/09; col. 130WH.]
Brian O'Mahony, chief executive of the Irish Haemophilia Society, who was personally involved in the negotiations with the Department of Health and Children in Ireland in 1994 and 1995 that led to the establishment on a statutory basis of a hepatitis C compensation tribunal on 16 December 1995, has written to me to say that my honourable friend's statement to the House of Commons was “misleading and erroneous”. He goes on to say that the compensation tribunal heard its first cases in early 1996 and that the first award for persons with haemophilia was made in March 1996. He concludes:
“Therefore the establishment of the Hepatitis C Compensation Tribunal, and significant payments by the Tribunal, pre-dated the setting up of both the Finlay Tribunal established in October 1996 and the Lindsay Tribunal of Inquiry set up in September 1999”.
I also have a letter from Kay Maher of the Republic's Department of Health and Children confirming Brian O'Mahony's statement, which concludes:
“I hope this will serve to clarify the sequence of events in Ireland for Ms Merron and I trust that her department will now correct the record”.
I look forward to hearing the department's response to that extremely important request.
Before concluding, I must inform noble Lords that sadly, as well as anguish and despair, there is evidence now also of anger in the haemophilia community about the Department of Health's treatment of the Archer inquiry and its report. It is five weeks ago that a terminally ill haemophilia patient, now deceased, who had given evidence to the inquiry, said to me with bitterness: “While we crossed the whole of Britain to meet the Archer inquiry, Health Ministers refused even to cross the road”.
The same intensity of feeling is seen also in the Haemophilia Society’s reaction to a recent letter sent to Chris James, its chief executive, by Anne Milton MP, a junior Health Minister, saying how appreciative she was of his involvement to date. It said:
“I do hope you will feel able to continue to work with me and my officials as your input is invaluable”.
In a letter I received from Chris James yesterday, he expressed deep annoyance at her suggestion that he had been working in close consultation with her and said that the truth was that he had met briefly with her only once since the election and had made it emphatically clear to her that the Haemophilia Society wanted full implementation of the recommendations from the noble and learned Lord, Lord Archer. Only that, he said, could ease the suffering of the afflicted and bereaved. He said also that it was utterly disgraceful for the Government to have chosen to ignore Mr Justice Holman’s findings in the High Court in the case of the Department of Health v Andrew March.
Chris James also tells me that one of his members, David Leadbetter, who is severely afflicted as a result of contaminated NHS blood, met the Prime Minister for 15 minutes as his constituent on 2 July. He writes:
“David was very touched by the Prime Minister’s empathy for his plight and was told by him that the issue would be dealt with urgently and in a positive way”.
At that meeting, David Leadbetter asked David Cameron whether he would also meet me, as president of the Haemophilia Society, to discuss the Government’s approach. His response was that he would “readily do so”.
I have not so far been asked to see David Cameron, but I am, of course, well aware of his warmly supportive attitude to the Haemophilia Society’s desire for urgent closure on just terms in a letter to Chris James on 18 June last year. In the society’s view, all that he has said contrasts sharply with the language now used by Anne Milton and explains the growing anger across the haemophilia community.
In the interest of creating hope in place of anger, let me assure the haemophilia community as a whole that it has in this House both a ready understanding of its despair and an unbreakable resolve that if this struggle has to go on, then go on it will until right is done. I beg to move.
Lord Archer of Sandwell
My Lords, we are debating a Bill presented by my noble friend Lord Morris of Manchester, who is very much to be congratulated on having secured this debate so early in the Session. I say at the outset that we all wish him a speedy recovery from his present affliction. For my noble friend, this is one chapter in an unrelenting campaign on behalf of a group of people who, through no fault of their own, suffered a devastating misfortune. In some cases, it ruined their lives; in others, it deprived them of close family members and for many of them it is already, sadly, too late.
Perhaps unusually among our exchanges, there is no question in this debate of seeking to pass the blame like a parcel from hand to hand. The events which led to the tragic outcome happened many years ago and extended over more than one Government. No Government who have held office during this millennium can be held responsible for what transpired, except that the years have passed and the victims understandably feel, as my noble friend said, that Government after Government have responded with little warmth or sympathy. It would not be true to say that there has been no response, but usually it has been wrung from a reluctant Government.
We are now making a little progress. It seems to be a matter of consensus across all parties that the victims have suffered too long, and that in a community that claims to care for its citizens there should be some alleviation of their afflictions and some willing recognition that those who suffer misfortune should not feel that they are on their own. When the inquiry made its recommendations—and I am sure that I can speak for my colleagues on the inquiry—it was not our intention that they should be set in stone on a take-it-or-leave-it basis. They were proposals intended to move the discussion forward. We gave reasons for them, but it was never our intention that if they were not accepted in their entirety we would walk away from all further discussion. Sadly, there was little discussion. The last Government made their response, but it would be a sad reflection on the democratic process if that were considered to be the last word.
My noble friend Lord Morris has incorporated some of our proposals in his Bill but I believe that that, too, is an attempt to move the discussion forward. A human tragedy should not become a political football. Perhaps the clearest example lies in the proposals for financial relief for the victims and their families, as my noble friend said. One obvious consequence of the condition from which they suffer is a loss of earning capacity, often followed by a forfeiture of pension rights. To that, we can add the costs of additional heating, a special diet and additional transport costs. Successive Governments have, to their credit, provided some relief, as I hope we set out fairly in our report, but some of those we are discussing were previously capable of earning and enjoying high living standards.
That raises a number of questions. Should the Government provide relief to compensate the victims for the quality of life which they have lost and for the financial loss which has exacerbated their condition? Those questions have become intertwined with yet further issues. Was there a legal liability on Governments to pay compensation? The problem about relying on legal redress—I say this from long professional experience—is that it becomes entangled with issues that are further and further remote from the suffering and need. Has the limitation period expired? Are the victims precluded from claiming by the releases they were compelled to sign as a condition of receiving government assistance? After the long delays, can people’s memory of what transpired be relied on? Were proper records kept? In all this, the important issue—the human need—is lost.
There have been long and sometimes expensive debates on whether the disaster happened because successive Governments were in some way at fault. We declined to address that question, because we do not agree with the proposition that unless a Government were at fault they have no obligation to relieve the distress. We believe that where there is undeserved suffering among an identifiable category of citizens, they are entitled to look to the Government for relief. If the Government address their duty and offer relief, that should not be construed as an admission that they or their predecessors were at fault. We summed it up by saying:
“The very purpose of Government is to protect its citizens, so far as possible, from life’s vicissitudes, and to afford them the best achievable quality of life”.
With hindsight, and this was discussed by my noble friend, we may have clouded rather than clarified the debate by suggesting a comparison with Ireland. We did so because it seemed to us that that should offer some guidance as to the standard of relief that we had in mind. The history of the catastrophe in Ireland bore strong similarities to that in England. Sadly, it gave rise to the very kind of arguments that we had been concerned to avoid. The Government said, “But there was a distinction between the two situations. In Ireland the Government were said by an inquiry to have been at fault. There has been no such finding in England by statutory inquiry”. Of course there has not; there has been no statutory inquiry. Successive Governments have refused to appoint one.
We declined to address the issue for the reasons that I have suggested, and in any event we were not a statutory inquiry. We were enabled to pursue our inquiry by the efforts of my noble friend Lord Morris, who sought to repair the omissions of successive Governments. We did not say that Governments had not been at fault; we said that the question was irrelevant to what mattered.
I want to correct a further misconception. It was suggested that the criticism of the Irish Government came from the Finlay tribunal and the Lindsay inquiry, as my noble friend said. The compensation tribunal and the compensation scheme for haemophilia sufferers were established in early 1996. The Finlay tribunal was not established until October 1996, and the Lindsay inquiry not until 1999. The provision made by the Irish Government was not a response to anything in those reports—it was a recognition of need. We believe that Ireland provides a relevant model, although we never suggested that the United Kingdom Parliament should be bound by legislation from Dublin or that it should slavishly follow the Irish mathematics.
One further consideration remains. We are conscious that this is not the most propitious time to propose government expenditure. There have been times in the past when the Government have had fewer constraints on their generosity. It is ironic that the delays by successive Governments in addressing the problem should have provided an excuse for being less generous. Surely the test of any community, though, is whether, when times are hard and resources are limited, the burden is allowed to fall on those who are least fortunate and most in need. Those who suffer misfortune do not forfeit their place in the community. The city gates are there to protect all the citizens, not to exclude those most in need. If my noble friend’s Bill initiates a conversation before yet more of the victims are no longer here to take part in it, his efforts will be justified.
Baroness Hussein-Ece
My Lords, I am grateful to be able to contribute to this debate on this important Bill. Unfortunately, I see from recent debates in Hansard that this is a long-running and much debated issue that has not yet been concluded. More importantly, the victims and families affected have not had the justice that they deserve.
As a new Member of your Lordships’ House, I come to this matter with a fresh outlook, and have been surprised and disappointed at the apparent lack of urgency and what seems like prevarication over successive Governments and over the intervening decades in coming to a fair and just settlement. I pay tribute to the noble Lord, Lord Morris, and the noble and learned Lord, Lord Archer, for their tireless and exemplary work on this.
It is even more unfortunate, in my view, that a resolution was not arrived at in previous years, as the noble and learned Lord has just mentioned, when we did not face the economic pressures that we face today. The treatment of patients with contaminated blood has been described as one of the most tragic episodes in the history of the NHS; it has also been described as the “contaminated blood scandal”. It is hard to argue with either of these descriptions; through no fault of their own, patients were treated with contaminated blood products and many have subsequently suffered poor health, needing specialist help, treatment and support. Many more have sadly died. We also know that many have suffered, and are still suffering, exceptional hardship.
I was, however, a little heartened to read the public health Minister’s statement in the other place last week that, while ruling out a suggestion to match the compensation to those in the Irish Republic, as was mentioned earlier, she would look again at some aspects of the report of the noble and learned Lord, Lord Archer, and would report by Christmas this year. Although we know that this will disappoint many families and campaigners, at least it provides some movement and hope, and I welcome the review.
I feel that we have arrived at the last chance saloon, and that a resolution needs to be negotiated with the assistance of sufferers of hepatitis C, their families and carers and other interested parties. It cannot be right that we have such a disparity between sufferers who contracted HIV and those who contracted hepatitis C. We know that HIV has become a much more manageable disease than it once was, while hepatitis C is treated by a gruelling six to 12 months of antiviral therapy, which can have severe side effects comparable to chemotherapy and successfully clears the virus in only around 50 per cent of cases. We know that sufferers can develop cancer and other serious medical conditions.
As we heard earlier, many sufferers face continuing hardship and rely on handouts from charities. This is not sustainable or acceptable in the long term. For many, it means a lack of access to insurance, crippling prescription charges and a reliance on social care services, which have to be paid for, depending on their circumstances. Any form of compensation should be awarded on the basis of a needs assessment.
To pluck out one example, it seems very unfair that the dependants of those who died after 5 July 2004 can apply for support from the Skipton Fund only if the victim had applied to the fund before dying. This does not seem to take into account all the merits of each case. I hope that this can be looked at. I also welcome the intention to establish a proper appeal mechanism for those whose claims may be or have been rejected; that is very welcome.
Like others, I believe that it is the responsibility of the Government to address the needs of their citizens. It is a question not of blame but of doing the right thing—of ameliorating the ongoing suffering and distress. The added challenge in today’s climate is to achieve this within the economic constraints that we find ourselves in. Sufferers and families must be treated with decency and fairness. The many expressions of sympathy that we have heard over many years, and which I have read, have probably been welcome but will no longer pay the bills, offer support or address the exceptional hardship.
I welcome the review and support efforts to establish, within a limited period, a timetable to reach a conclusion to this matter. I hope that we are not going to wait another period of years until the matter resolves itself. The dwindling numbers of sufferers deserve our support; they deserve closure and justice.
Baroness Finlay of Llandaff
My Lords, I rise in support of the noble Lord, Lord Morris of Manchester, who must be admired for his perseverance and loyalty to a group of people who have felt severely wronged. It has been said that the civilisation of a society is reflected in the way in which it looks after its most vulnerable members. I think that the noble Lord has done a great deal to raise the level of civilisation in our society and the way in which we approach people who are vulnerable.
I declare an interest: I work for Velindre NHS Trust, which now incorporates the Welsh Blood Service. I am grateful to Geoff Poole, the director of that service, for having discussed this matter with me prior to this debate.
I take this opportunity to pay tribute to the deceased husband of my noble friend Lady Campbell of Surbiton. Graham was a delightful, charming and intelligent man, who unfortunately had contaminated factor 8. He was responsible for supporting my noble friend at the beginning of her career, which I sincerely believe has been as stellar as it has been because of the love and support that he gave her. When he died, she was completely devastated, as were many of us. In his dying, he was extremely dignified and never bitter.
The tragedy that has happened is one from which lessons must be learnt. Indeed, the noble and learned Lord, Lord Archer, says in the closing paragraph of his report:
“We must now look to the future. We cannot undo the damage done, nor turn back the clock to take a closer view of those past events and decisions”.
I take this opportunity to take a forward look. The Bill is important, but I just wonder whether it might need to take more of a prospective view, particularly where it includes lists of conditions to be considered in blood donations.
This tragedy has highlighted the problem of risk assessment. We do not live in a risk-free society and it is important that we do not fail to recognise risk when it emerges and stares us in the face. The Advisory Committee on the Safety of Blood, Tissues and Organs—SaBTO—was set up three years ago, replacing its predecessor. I ask the Minister to provide assurance that the committee will continue and remain supported, as it has important work to do. It is currently looking at the risk of new variant CJD in relation to blood, tissues and organs. The services out there are waiting to hear its conclusions as new evidence emerges.
I also take this opportunity to say that, in my view, we face an unintended consequence of previous legislation—the Human Tissue Act—which prevented our looking at routine samples from tonsillectomies and splenectomies in an ongoing way to try to find out the true incidence in the population of variant CJD. Without that information, it is harder to know the size of the risk that blood transfusion services face in taking blood from donors, as we do not have a reliable and simple clinical test to look for the presence of variant CJD. It is likely that variant CJD is transmitted in blood transfusion, but we are not sure whether the removal of white cells from blood has decreased the risk as much as the services hope. The removal of white cells should have decreased the risk hugely, but the risk is always there in the clinical scenario, where a patient faces life-threatening haemorrhages—the risk of dying from exsanguination versus the risk of transfusion. Obviously, the risk of using blood and the readiness to do so in the service varies with the clinical condition of the patient, but that balance is considered every day across Britain. We do not know whether blood should now be filtered more vigorously than has been the case because of variant CJD. SaBTO’s ongoing work will, we hope, inform that decision.
Blood services are aware of the theoretical risk, but they just do not know the best way of allocating resources to keep that risk to a minimum. We no longer use imported plasma, we do not accept paid donors and HIV is quickly identified in screening. However, the true safety of blood depends on the way in which the service screens and refers its donors. Men who have had sex with men are excluded for life from being blood donors. The decision has just been made that people with ME are deferred. There is a possibility—it is unproven—that the XMRV virus is associated with ME. The fact that these people are being excluded from being donors does not make the statement that there is a definite association, but it is part of the risk assessment process and I am glad that the risk has been taken seriously and that proportionality was applied when the question emerged. Similarly, when people have travelled abroad, donation is deferred, as things such as dengue fever are not easily detected. Much of our safety depends not on testing the blood that is donated but on the early screening out of donors who may be at risk and on being careful about the blood products that are used.
The use of blood is remarkably safe, but it would not be fair to say that it has zero risk. The major problem now comes from misidentification—either a blood sample wrongly labelled at cross-match or misidentification of the recipient, so that they are given the blood that was cross-matched with somebody else. Another problem is infection in relation to platelets, although the use of single donors for platelets has decreased that risk hugely. Platelets cannot be stored at 4 degrees centigrade; they are stored at 20 to 22 degrees centigrade, so that they still function, but that is an environment in which bacteria can multiply. Indeed, there have been recent deaths of people who, unfortunately, have had bacterial septicaemia. I hope that the Government will support new developments, such as the clotting factors that have been developed for our troops in the battlefield. They are contained in teabags and, when they are put over a bleeding wound, rapidly cause clotting. They may revolutionise our management of trauma. They are expensive and new, but they may turn out to be cost-effective in the long term.
In the balancing act, we also have to consider the costs related to self-salvage of blood. I pay credit to Dr Dafydd Thomas from Morriston Hospital, who has pioneered a lot of this work to significantly decrease exposure to pathogens. As far as factor 8 concentrates go, we hope that they are now virus free, but it should be stated that that relates to all known viruses. When I qualified, HIV did not exist; it was not known. I remember clearly the index cases that started to emerge in the USA, when people did not know what the condition was. We do not know what we will face tomorrow. Looking towards tomorrow, I think that, whatever happens, we need to be vigilant about emerging new diseases, as well as the discovery of viruses of all types which we do not currently know exist but which I am sure we will find are responsible for diseases that we are treating but do not know are infection related.
In these last moments, I turn to compensation. Whenever something has gone wrong, the longer it goes on, the worse it is for those who are bereaved and feel aggrieved. The anger and distress turn to deep, corroding bitterness as time goes on and people feel that they have not been listened to. The sad reality is that no money can replace the life of the person who has died prematurely from a cause that was not expected. In many ways, the only measure that we have in our culture is money, so we look to financial compensation. However, I hope that one of the lessons that will be taken from this whole tragic saga is that things must be dealt with quickly. To become overfocused on money is to lose sight of the deep personal distress of people before they die from the time that they know that something has gone wrong. We must address that with a change in attitude
I support the comment of the noble and learned Lord, Lord Archer, that we must get away from looking to the courts and the legal system to provide us with answers. They are the point of last resort; I would say that they are beyond the point of last resort. Things have probably gone irretrievably wrong by the time they get there.
There are many lessons to be learnt. I wish the noble Lord, Lord Morris, well with his Bill. Some tiny amendments could make it more future proof.
Lord Corbett of Castle Vale
My Lords, if there was a Nobel Prize for persistence, my noble friend Lord Morris of Manchester would walk away with it by a mile. I also pay tribute to noble Lords who have taken a consistent interest in this matter, as well as colleagues in the other place along the Corridor.
We are not picking on this Government, but on the Government of the day. There is a widely supported view in both Houses of this Parliament that the debt of honour owed to the victims of contaminated blood, their carers and their families must now be redeemed. Of the 4,670 patients given infected blood by the NHS in the 1970s and 1980s—my noble friend Lord Winston called this the worst treatment disaster in the history of the NHS—only 2,700 survive. We also owe special thanks to my noble and learned friend Lord Archer of Sandwell and his colleagues for conducting the independent inquiry into this issue against the background, as he said, of the refusal of successive Governments to have an official inquiry.
As my noble friend Lord Morris has explained, the Bill sets out a comprehensive system of compensation to alleviate the intense hardship and suffering of victims, their carers and families. I, too, hope that the Government accept that it has now been acknowledged that the statements made about the timing of the introduction of the Irish scheme were mis-statements to both Houses. I hope that, in responding to this debate, the Minister will be able to assure us that those corrections have been made to the official records in the Department of Health. They are of great importance—although, as my noble friend said, no one involved in this campaign wants to go down the road of trying to apportion blame. The matter of negligence simply does not arise. A great wrong, an injustice, has been done. It must now be put right.
I will not go through the detail of the Irish case, but I underline its importance. Successive Governments have relied upon the finding of negligence in the Irish republic in saying that they did not want to know about what happened in Ireland as no negligence was established in the United Kingdom. As my noble and learned friend Lord Archer said as early as page 9 of his report, which bears repetition,
“The past cannot be undone. Nothing can rescue the victims and their families from what they have already suffered. But a review of the events and decisions that led to the tragedy may assist in coming to terms with the consequences, and might suggest ways in which Government may address those aspects which it is not too late to rectify. While hindsight, by definition, operates after damage is done, it may reveal important lessons for the future. We consider that to be more important than apportioning blame”.
It seems that the Government have now abandoned arguments around the issue of negligence. In the other place, Ms Anne Milton, the Parliamentary Under-Secretary of State at the Department of Health, announced on 14 October a review of the recommendations made by my noble friend for ex gratia payments, free NHS prescriptions in England and access to insurance. It will be conducted by officials with the support of clinical experts and external groups. She aims for this review to be completed by Christmas. This is progress and I welcome it, although I would have been a little happier if it had had a more independent flavour about it. I hope that the estimated cost of the scheme proposed in my noble friend’s Bill will not be exaggerated. My noble friend mentioned an estimate of £3 billion being snatched out of the air by lazy journalists—it is no such thing; it is about a third of that.
However, the cash involved should not be a factor influencing the review. It is the principle that matters. Damage was done to people, through no fault of their own, when, like the rest of us, they felt that our National Health Service could be relied upon. I believe that there is strong moral duty on government to recognise that and put it right. That is the first principle to be established.
Then we come to the matter of cash. I accept absolutely that this is perhaps not the best day of the week to be asking for cash, but I remind the House of my former constituent, Mrs Sue Threakall. She would have a robust response if the result of that review were to be, “We acknowledge that something should be done about this. Terrible tragedies have happened. Unhappily,”—to borrow a remark from an honourable friend in another place—“there is no money left”. Her husband Bob had hepatitis B and C after being given contaminated blood. What price can we put on the loss of that life and the severe financial strain put upon Mrs Threakall and her family? I have no idea what monetary sum could get anywhere near compensating for that.
When Bob died, which she knew was going to happen, Mrs Threakall said very starkly, “It just ripped the family apart”. However, because her husband died before 2003, she was ineligible for any compassionate payment, and so she and her then young family were left bereft. Now her means-tested benefits are under threat from this Government’s comprehensive spending review. Mrs Threakall lives with severe financial problems, as do so many others who the Government should now decide deserve the compensation outlined in the Bill.
The issue can be put quite simply. It is now time that the great wrong done to Bob Threakall, to his wife—his carer, his spouse—and his family is put right. That is what the Bill seeks to achieve.
Lord Low of Dalston
My Lords, I am glad to follow the noble Lord, Lord Corbett of Castle Vale, because I identify so strongly with the points of principle that he has made. However, I fear that I will be unable to articulate them with anything like his eloquence.
I add my voice in support of the Bill. I shall be brief. It is unnecessary to go over the whole sorry history of this tragedy—indeed, this scandal—which, as several other speakers have mentioned, has been described by the noble Lord, Lord Winston, as the worst treatment disaster in the history of the National Health Service. It is a textbook illustration of the truth of the great Richard Titmuss’s warnings about the dangers of allowing commercial factors to operate in something like the supply of blood products. Nor shall I go in any detail into the recommendations of the Archer inquiry or the Bill based on them, which is before us today. The noble Lord has done that for us already. I join other speakers in paying tribute to the noble Lord, Lord Morris, and the noble and learned Lord, Lord Archer of Sandwell. It is only the tireless persistence of the one and the dedicated and the meticulous investigation, analysis and documentation of the issues by the other, together with a clear-sighted prescription as to what a civilised society ought to do, that have brought us to this point.
What I find particularly deplorable is the complacency displayed by the authorities when what had happened came to light. The journey from the promise of self-sufficiency to its attainment took five years in Ireland but 13 years in England and Wales. This reflects discreditably on the administration of our health services and is something that makes us all feel ashamed. Equally shaming is the heartlessness, obfuscation and prevarication shown by successive Governments, and the cheese-paring and obstructive nature of their response. This is an indictment of the whole of our official culture in this country. Successive Governments had recourse to the device of Crown immunity, requiring sufferers to sign a waiver in respect of hepatitis C in circumstances where they did not know they might have it but the department knew they were at risk. There was resistance to the disclosure of documents to the multi-party group. There was the refusal to hold an inquiry or co-operate fully with the inquiry of the noble and learned Lord, Lord Archer, and then disingenuous reliance on the fact that there have been no findings of fault against the British Government. There was a reliance on discretionary trust funds, rather than a system of benefits as of right, to provide a measure of compensation. There was a failure to recognise the claims of widows. There was a suggestion that, unless a Government are in some way responsible for a misfortune that befalls a group of their citizens, they are under no obligation to relieve it. All these things and more can bring only shame on the reputation of this country and its handling of this tragedy, which has been so much less open and generous than that of numerous other countries.
Two things stand out particularly. One is the reliance on a system of ex gratia and discretionary payments to provide a measure of compensation, rather than a system of direct financial provision as recommended by the Archer inquiry. This smacks of the mentality of the Poor Law. Secondly, most shocking of all is the way that the state has sought to shuffle off responsibility for making amends to those who, through no fault of their own, have suffered as a result of state action or the actions of organs of the state.
The past cannot be undone. Nothing can rescue the victims and their families from what they have suffered. All we can do is make amends as best we can, and as far as measures of compensation can, at the earliest opportunity we have. The previous Government’s response fell significantly short of full implementation of the Archer report. The least this Government can do is take the first opportunity they have to right the wrong that has been done to the victims of this tragedy. The Coalition Government have already shown that they have an honourable record of doing the right thing where other Governments have done their best to obfuscate, prevaricate and shuffle off responsibility in the way that Governments do. The Government’s response to the Saville inquiry into Bloody Sunday, and the way they have grasped the nettle in relation to those who lost out as a result of the collapse of Equitable Life, gives one confidence that their instincts are sound; that they know what is the right thing to do; and that they are able to face up to their responsibility and act on it when they know it.
As we have heard, the Parliamentary Under-Secretary of State for Health, Anne Milton, has said that she hopes the matter will be sorted by Christmas. The best way for the Government to achieve this would be to give the Bill a fair wind. I very much hope that they will.
Baroness Rendell of Babergh
My Lords, I will be brief. It is Friday morning and—however serious and important the question under discussion, and this one is very serious indeed—no one wants to be too long detained. The position of those of us who support the Bill has been made very clear by my noble friend Lord Morris of Manchester and, in his report, by my noble and learned friend Lord Archer of Sandwell. We have already heard eloquent and informative speeches from four other noble Lords. I shall not, therefore, speak of statistics or the large sums of money, which have been mentioned in discussion of what levels of compensation would cost the taxpayer, or do more than touch on the clinical and medical aspects of haemophilia and its amelioration.
I am only speaking at all because I believe I am in a unique position to talk about haemophilia and those afflicted by it. Some 10 years ago I wrote a book—a work of fiction—that centred on what I called the two strands of inheritance: the inheritance of a peerage and the inheritance of a disease. This was at the time of the House of Lords Bill, and inheritance of a peerage was very much to the fore in debates in your Lordships’ House. As to haemophiliacs, their sufferings were by then being alleviated, if not cured, by modern medicine.
My book was in part a historical novel. It dealt with haemophilia in the late 18th and early 19th centuries, as well as later manifestations of the disease. I went into the peculiar nature of its genetic inheritance carefully, since many previous writers had made mistakes in this area. For this very reason I researched the whole subject with great care, investigating the discoveries made and the progress achieved at various American universities. I also used your Lordships’ Library and travelled to south-east Switzerland to see what I could discover in a village which had once been, but was fortunately no longer, the home of many sufferers from this tragic blood disease as a result of contiguity and in-breeding.
What I carried away from all this research, apart from what I needed for my novel, was an abiding indignation that, just as effective treatment was successfully allowing haemophiliacs to lead almost normal lives, these sufferers were being afflicted from an unsuspected, indeed bizarre, source. The blood that they needed—a life-giving elixir—was contaminated with some of the worst diseases known to man: HIV, hepatitis C and, perhaps worst of all, human-variant CJD. It was, in fact, death dealing. My novel ends with the descendants of those 18th century haemophiliacs leading full and active lives—the men knowing that their daughters will be carriers, the women aware that all or some of their sons will be haemophiliacs—but wise enough to become parents through adopting children. None of them could have dreamt, in fiction or in fact, that a triple plague could be visited on them through medication. None of them, in fiction or in fact, would have believed that they would have such huge premiums demanded of them by insurance companies as to be made virtually uninsurable.
When I wrote to the Guardian and the Times on this subject at the time of my noble friend Lord Morris’s earlier Bill in December 2009, outlining the tragic results of contaminated blood transfusions, I received many letters from readers. Most were from the widows and other dependants of infected people, describing how they had suffered as a result of losing the family breadwinner, which often meant also losing their homes. One told me that I was wrong to write of HIV/AIDS as being a serious disease, since so much effective medication was now provided for its victims. I hope such a view is not generally held and is not an opinion shared by opponents of the new Bill, who might then extend that principle to hepatitis C and CJD. These are terrible sufferings—even the stress and fear occasioned by HIV, as mentioned by the noble Baroness, Lady Finlay—and they are made all the worse for those afflicted, and the widows, children and families whom their deaths have left behind, by the knowledge that these diseases were received through being given the blood of drug addicts and of inmates of US prisons.
My researches taught me a great deal about haemophilia. I would not have the temerity to say that they showed me what it is like to have the disease. They did, however, teach me exactly what those sufferings may be and how to a great extent sufferers may be exempted from them by transfusions of suitable and uncontaminated blood. The transfusions received by those whom my noble friend Lord Morris has called “a small and stricken community”, which were supplied by the NHS, have unknowingly killed nearly 2,000 of them. These people were ill already. They already had a depleted lifespan. Haemophilia itself is bad enough, a daily disablement, but the treatment they were given was a case of adding insult to injury.
This is not a political issue—it makes no difference whether one belongs to the right, the left or in-between—but a moral issue. Those who took part in the previous Bill introduced by my noble friend Lord Morris—I was not among them—and those who have spoken today, have explained the situation and gone into detail, presenting various aspects of the disease and what can be done to ease it. They did so from a sense of moral indignation and resentment on victims’ part, and from a powerful sense of justice, for no explanation for the sake of clarity has been necessary. The issue is so clear that a small child could have understood it, as children can always understand what is right and what is wrong, what is fair and what is deeply unjust.
Lord Addington
My Lords, for those who speak this far down the list, not much remains to be said and most of it will be repetitious. However, we should congratulate the noble Lord, Lord Morris, on consistently coming back to this issue. He has worked on disability issues for a long time. If there is a bulldog spirit in this House—a tenacious person—he embodies it totally. It is probably worth putting on the record again the fact that he has not thought twice about hitting his own party’s Ministers hard and often. He has shown no fear about that. Party loyalty has not got in the way of his raising the issue.
I hope that the Government do not defend their position with a series of Treasury Bench-type responses, such as, “We don’t have to pay this out so we won’t”. I am afraid that previous Ministers have given such responses. I hope that we get some answers. If we cannot accept the Bill in its entirety, what can be done? That is a very important question. Moreover, what will be done in a certain phase of time? If we can find out when something will happen—Christmas has been mentioned—and what exactly that is, the degree of certainty and knowledge will help those involved. We can argue about exact details later, but that certainty would be something.
What initially got me involved in this issue, a good few years ago, was the difference in the way that we treated two groups of people—I refer to those affected by hepatitis C and HIV—who had contracted very similar conditions through a very similar process. However, because of a legal defence position, one group did not receive help. Surely we can address that at the first opportunity. If we carry on like this, we will carry on having similar debates and wasting time, leaving the people affected scrabbling in the air, waiting for something to happen and grabbing on to hope and despair. That affects their lives as well and piles not insult on insult but injury on injury. I hope that the noble Earl will be able to give us a positive response as the whole House and the entire political system deserve to be given a clear answer. If this is not the final measure that we seek, at least I hope that it will not leave us demanding a sequel.
Baroness Kennedy of The Shaws
I hope that I may make a brief contribution in the gap. The present Government have said that they want closure on the contaminated blood issue but, to achieve this, they must offer financial compensation, not charity hand-outs through the two charities that were set up, the Macfarlane Trust and the Eileen Trust.
Following the report of my noble and learned friend Lord Archer, the previous Government had agreed to make some payment to those infected with HIV by contaminated blood products and some sort of payment to their infected partners. However, they made it very clear that this was not compensation, so it falls far short of the recommendations in Lord Archer’s report and does not apply to those infected with hepatitis C by contaminated blood products. I want to reinforce what has been said by others—that we now know that those infected with hepatitis C are more likely to die early than those who have HIV.
As the noble Lord, Lord Corbett, and my noble friend Lady Rendell have said, this is a moral issue. Closure for those affected will come only with an apology from government and some sort of capital payment. That is why this Bill is so important. Clause 4(2) seeks such a payment and paragraphs (b) and (c) are particularly relevant, so that any capital payment is paid directly to the person infected, and not by way of charity hand-out. It is clear in the report and in the Bill that such a payment should not be means-tested.
That leads me to another important issue in the context of our times. I understand that many victims are literally worried sick that the spending review and subsequent welfare cuts will, if applied to any of them, have a serious effect on their presently very limited standard of living. The multi-drug regimes that many undergo on a daily basis can make them feel well enough one day but very ill the next. There is no normal day, so that any medical for, say, disability living allowance, may not accurately reflect their condition or their ability to work. It is, therefore, essential that those infected with HIV/hepatitis C be passported through any such medicals. I hope that the Minister will give us an assurance that this is what will happen.
Baroness O'Cathain
My Lords, I rise to speak briefly in the gap. I apologise to the noble Lord, Lord Morris, as I have spoken in support of him in this Chamber from the very start of his campaign but, due to my lack of attention to detail, I did not realise that this debate was taking place today. However, everything that I wanted to say has been said in the most moving and compassionate way.
Promises have been broken, victims have been betrayed and trust has been compromised—all of this, I am afraid, is accepted. I have three hopes. The first is that the response from my noble friend will be positive and compassionate. Secondly, I hope that this debt, which is much easier to settle than the debts that this Government have inherited, will be settled. Thirdly, I hope—this is probably the vainest hope of the lot—that the media will find it in their hearts to support the Bill, cover the speeches made today and realise that this debate is something on which this House scores. It is a good news story, and we have a role to play in the Parliament of this country.
Baroness Wheeler
My Lords, I, too, begin by paying tribute to my noble friend Lord Morris of Manchester, for his tenacious and tireless work in campaigning on the issue before the House today. Indeed, no one reading back through the reports of the debates on the Bill in its previous passage to Third Reading in the House, as I have done in preparing for today’s debate, can fail to admire and be very humbled by his continued determination to ensure that the plight of those whom he has described as,
“arguably the most needful minority in Britain today”,—[Official Report, 23/4/09; col. 1607.]
is fully recognised and properly financially compensated.
We recognise the important and continued role played by him and other noble Lords who have spoken in today’s and previous debates. I refer particularly to the independent inquiry report of my noble and learned friend Lord Archer into NHS-supplied contaminated blood and blood products, which received widespread all-party acclaim, and whose report recommendations form the core framework of the Bill. Like him, we welcome the consensus in the House that victims have suffered for too long. We also value his insights into his report from the perspective of events that have followed its publication. Finally, I endorse the admiration expressed across the House for the work of the Haemophilia Society and the close support that it has provided to the people infected, their carers, widows and dependants.
The debates in this House and in the other place last week recount the very personal and tragic experiences of patients, their families and those who have died. Haemophilia sufferers were plunged into a nightmare of failing health, pain, suffering, financial hardship and social deprivation. The support and campaigning work of the society over the past three decades have helped to provide solace and constant, practical everyday support, and have led to real improvements in care and financial support.
However, we readily accept that there is much more to be done. This is unfinished business from the previous Government and we regret that we were not able to respond formally to the High Court judgment and to the related recommendations in the report of the noble and learned Lord, Lord Archer, before we left office. Despite the sense of frustration at this and the belief that much more should have been done by successive Governments, the House will recognise the work undertaken by my noble friend Lady Thornton to progress through the Department of Health vital improvements such as in the administering, handling and safety of blood products and in developing further best practice and improvement in service provision for the ongoing treatment of haemophilia sufferers.
On behalf of these Benches we welcome the review announced last week by the noble Earl, Lord Howe, following the announcement and debate in the other place. It is a very positive step that will, I hope, take this matter forward towards achieving the closure that is desired in the House.
We welcome the inclusion in the review of the commitment to look at ex gratia payments made to those infected with hepatitis C, including financial support for dependants, issues surrounding the arbitrariness and injustice of cut-off dates for eligibility of the current scheme, and comparison with ex gratia payments made in the UK to those infected with HIV and their dependants. We also welcome consideration of the provision of life, mortgage protection and travel insurance for those infected in light of similar access available to other groups. As we have continually found, there is often a real difference between what insurance companies promise will be their actions on such issues, and what they actually do when considering individual cases.
In respect of prescription charging for those infected, noble Lords on both sides of the House will be aware of the previous Government’s commitment to introduce free prescriptions for people with long-term conditions, which would have included people infected by contaminated blood. I therefore ask the Minister what impact the announcement under the Government’s CSR that the free prescriptions programmes will not now be taken forward will have on the review’s consideration of this matter. Will the Government no longer honour this commitment to people infected by contaminated blood?
We also endorse the inclusion in the review of the provision of, and access to, nursing and other care services in the community for those infected. We hope this will lead to improved NHS and local authority service provision, coproduction and co-operation.
We welcome the Government’s commitment for the review to make recommendations to Ministers for their consideration by the end of the year. As noble Lords have stressed during this debate, it is crucial for this review to be conducted with the utmost expedition. I look forward to hearing further details from the Minister on who is to lead it, how it is to be undertaken, the relevant expert groups and external groups that were referred to in the other place by the Under-Secretary of State for Public Health, Anne Milton, and how the views of those infected, their relatives and carers, and other representatives will be sought and taken into consideration.
The Minister emphasised her desire for the review to be dealt with,
“openly and honestly, with clarity, without party politics, with humility and with empathy”.—[Official Report, Commons, 14/10/10; col. 568.]
We wholeheartedly agree and look forward to it proceeding without delay. Will it include an overview of all the different compensation funds established to administer payments to people infected by contaminated blood to ensure consistency of approach and decisions?
Finally, on the question of continued government funding to the Haemophilia Society, can the noble Earl confirm that the current level of funding will not be affected by the changed basis for voluntary sector funding?
In closing, I again congratulate my noble friend Lord Morris on bringing back the Bill to this House and his dedication, determination and persistence—once again so much in evidence today. We look forward to working on the Bill in its future stages in the House.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I congratulate the noble Lord, Lord Morris of Manchester, on the reintroduction of the Bill and echo the noble Baroness, Lady Wheeler, in paying tribute to the noble Lord. On a personal level, I am sorry that I was unable to be present at the Second Reading of his Bill in the previous Session, but I am pleased to be able to rectify that situation today, albeit on a different side of the House.
Since this debate was scheduled, an important development occurred in another place, which is of direct relevance to the debate today. My honourable friend the Under-Secretary of State for Public Health laid a Written Ministerial Statement on 18 October which stated that the Government are reviewing a number of aspects of the support available to those affected by contaminated blood. This includes ex gratia payments for hepatitis C, access to insurance, access to nursing and care services, and prescription charges.
I can confirm to my noble friend Lady Hussein-Ece that the review will look at a number of aspects of the hepatitis C payments scheme, including the size of payments, whether annual payments should be made, payments to spouses or dependants of those who died before the scheme was set up, and additional payments in respect of spouses or dependants of those who are still alive. The terms of reference of the review have been placed in the House Library, and I can confirm to the noble Baroness, Lady Wheeler, that the issue of free prescriptions for this group will indeed form part of the Government’s review. I believe that my honourable friend sent copies of the Statement to the noble Lord Morris of Manchester, and the noble and learned Lord, Lord Archer of Sandwell.
It is important that the House understands that this review is under way and that Ministers of this Government are not impervious to representations made to them to reconsider these matters. The noble Lord, Lord Morris, is I hope already aware of my sympathy for the group of people affected by this tragedy and the fact that I recognise and respect what he is trying to achieve with this Bill. Nevertheless, I have to be candid in expressing some reservations as to the need for legislation on this issue. We all acknowledge the plight of those affected, but in debating the Bill we should consider whether it delivers tangible benefits for those affected by this tragedy. In this respect, there are three main themes in the Bill that we need to consider: first, improving treatment and services for those affected by this tragedy; secondly, preventing a similar tragedy occurring in future; and thirdly, financial support for those affected.
I will start with the issue of improving treatment and services for those affected. This Government are firmly committed to the principle of ensuring that NHS services for all patients are of the highest possible standard, and that standards continue to improve. That principle is at the centre of our approach to the NHS. It applies as much to those infected by contaminated blood as to any other patient group. Where services are failing or inadequate, there are established procedures in place to address this. Clause 1, the main clause in the Bill, aims to establish a statutory committee,
“to advise on the treatment of haemophilia”.
The purpose of the committee would be to provide advice on the selection, procurement and delivery of therapies, as well as access to those therapies, for haemophilia patients. But what additional benefit would be gained by placing the proposed committee on a statutory footing? The only clinicians that the Bill stipulates should be members of the proposed committee are the haemophilia centre doctors themselves. I take this to be implicit acknowledgement of the effectiveness of haemophilia doctors in using their clinical expertise to secure the best treatments for their patients. We have to ask: what more is to be gained from their forming a committee?
I recognise that there is a wider issue here of patients being involved in decisions about their care and that, historically, haemophilia patients feel that they were subjected to treatment without sufficient knowledge of the risks. However, it is exactly for those reasons that the Government’s White Paper, Equity and Excellence: Liberating the NHS, published in the summer, sets out a vision to place patients at the heart of the NHS, giving them greater choice and control over their treatment, with the objective of making shared decision-making the norm. Progress is already being made in achieving this objective for this patient group through the Haemophilia Alliance, a network of patients, doctors and others involved in caring, which was established in 1999. The Department of Health now formally meets the alliance twice a year. Two such meetings have already been held and the group has unanimously agreed that it would be helpful for all parties to better understand how specialised services for haemophilia patients are commissioned, and to identify how the Haemophilia Alliance can influence service provision countrywide. The alliance is working well, and I have not yet heard a convincing rationale for replicating its role in a statutory committee.
Lord Archer of Sandwell
I am most grateful to the Minister. Does he appreciate that one matter that concerned us was the establishment of a permanent secretariat to the committee, so that one would not have to wait for a meeting of the committee before responding to something that had happened? It would monitor events as they arrived and respond to them quickly.
Earl Howe
I am grateful to the noble and learned Lord. My understanding is that there are established routes of communication to enable the alliance to contact officials in the department if such a contingency were to arise. I am not sure that the fact that the meetings are at intervals makes any appreciable difference in this context.
Clause 3 also focuses on treatment. It provides for a scheme of NHS cards for those infected through treatment with contaminated blood and blood products. These would enable access to NHS services, including prescriptions, free of charge. In fact, the majority of services specified in the Bill, such as counselling and physiotherapy, are already available in England under the NHS, where needed, free of charge. Perhaps I may venture that the real issue for this patient group is not that of cost, but whether they receive high-quality, adequate levels of treatment and care. I recognise, however, that prescription charges are a particular grievance for this patient group, and that some have experienced difficulties in accessing nursing and care services, including specialised counselling. That is why these issues are included in the current Department of Health review.
I was concerned to see that the clause also provides cardholders with priority access to NHS treatment. This could have significant implications. At one level, it would give priority access for everyday treatments such as chiropody services. At another, it could provide for jumping the organ donation queue, which, when organs are at a premium for everyone, cannot be justified. Those decisions must be based on clinical need and nothing else.
Lord Morris of Manchester
My Lords, perhaps I should explain why I made that provision. Other people know all the statistics about the disaster, but I personally knew hundreds of its victims—and now, day by day, I hear of the deaths of valued friends. That is why I approached this in the way that I did. As honorary parliamentary adviser to the Royal British Legion for many years, since 1985, I know that the priority that their members are given under the National Health Service is never abused. No one has ever said that disabled ex-servicemen abuse that privilege. I am certain that the Haemophilia Society will act just as honourably as those who so readily give their lives in the service of this country.
Earl Howe
My Lords, I respect greatly the points that the noble Lord, Lord Morris, has made. Nevertheless, it is difficult to enshrine in legislation priority access to NHS services for an individual group of patients. That is the real issue, but of course I shall reflect the point that he has made.
As I have indicated, the issue is whether patients infected with contaminated blood receive prompt access to the necessary treatment, based on clinical need. I have heard no reports that anyone in this patient group faces difficulties in this regard. I therefore argue that nothing in the Bill would improve treatment or services for those affected by contaminated blood beyond what is already on offer from the NHS or the Department of Health, or is being considered by Ministers.
I turn now to the critical issue of making sure that no similar tragedies occur in future. The Government are firmly committed to ensuring that the blood supply is as safe as possible, and we continue to work to provide ever safer blood and blood products. Clause 2 provides for haemophilia patients to be offered testing for a number of specified infectious agents, and for blood donations to be screened for those agents; yet testing for all but one of the agents is already available to haemophilia patients, and all blood donations are screened for those same agents. The sole exception is variant CJD, for which there is currently no validated test available. We cannot legislate on something that it is currently not possible to implement. The Bill rightly acknowledges that the list of agents for which the blood supply is screened needs to be kept under constant review. There are effective systems in place to ensure that this is done, both within the UK blood services and also through the Advisory Committee on the Safety of Blood, Tissues and Organs, SaBTO—which I can assure the noble Baroness, Lady Finlay, will continue to exist. Therefore, there is no need to replicate this function on a statutory basis.
The Bill also provides for the introduction of prion filtration. The Government are currently undertaking an evaluation of the costs, benefits and implications of prion filtration to inform our decision on whether to implement this recommendation. We do not need primary legislation to do this.
Finally, blood safety is regulated by European directives that set standards of quality and safety for the collection, testing, processing, storage and distribution of human blood and blood components. Blood products such as clotting factors are regulated in accordance with the Community code for medicinal products. Therefore, there is nothing in the Bill that would improve the safety of the blood supply. I fully support the principle of making the blood supply as safe as practically possible, but it is not appropriate to use legislation to require the blood services to adopt a specific technology such as prion filtration. Such legislation cannot properly take account of emerging scientific advances, and it is important for the blood services to retain the flexibility to introduce the most appropriate measures on the basis of expert advice.
I now turn to the subject of Clause 4, the issue of compensation. In recognition of the plight of those affected, the Department of Health has already set up ex gratia payment schemes for those infected with HIV and hepatitis C. It is worth pausing to lay out the level of financial support currently available to people in this group. Those infected with HIV receive a flat-rate payment of £12,800 a year. They may also be eligible for additional discretionary payments. In the year ending April 2010, the average total payment to an individual infected with HIV was £17,400. Those infected with hepatitis C are eligible to receive an initial one-off lump sum of £20,000 when they develop chronic infection. Despite contracting the virus, some people will make a full recovery. However, others may go on to develop serious liver disease. For this group, there is a second one-off lump sum payment of £25,000. All these payments are tax-free and are not counted when calculating individuals’ eligibility for state benefits. Therefore, if they are unable to work for health reasons, they will receive state benefits in addition to these payments.
One of the key elements of this clause is subsection (4), which states that,
“the Secretary of State shall have regard to any comparable compensation schemes offered in other countries”.
I should like to inform the House that previous Governments did indeed have regard to comparable schemes when the Macfarlane and Eileen Trusts for HIV were first set up, and we are taking account now of schemes elsewhere. The current payments for those with HIV generally compare very favourably with payments in other countries, and I direct that remark particularly to the noble Lord, Lord Low of Dalston.
I acknowledge that there are anomalies between the current payments for HIV and those for hepatitis C, whose payments are less favourable. That is why the Department of Health’s current review includes payments for hepatitis C, as well as looking into whether there are any alternative payment mechanisms. In the light of that, the House needs to consider what purpose there is in trying to legislate on this issue.
Finally, Clause 5 requires the review of a number of issues which were covered in the previous Government’s response to the report of the noble and learned Lord, Lord Archer. Again, the question is whether any benefit is to be gained from putting this work on a statutory footing.
The one issue in Clause 5 on which I should like to comment specifically concerns medical insurance. I am aware that patients infected with HIV and/or hepatitis C by contaminated blood either cannot obtain health insurance or are subject to a significant premium loading. However, one of the underlying rationales of the welfare system here in the UK is to provide services for those who cannot obtain insurance, for whatever reason. The whole point of the NHS is that people should not need private medical insurance. For the state to assist a particular uninsurable patient group to obtain private medical insurance would, I believe, set a dangerous precedent that could undermine the core principles of our welfare system.
In conclusion, I should like to address a few of the questions raised in this debate, dealing first with some of those raised by the noble Lord, Lord Morris. He asked what the Government have done in relation to the recent case of variant CJD having been found in a haemophilia patient. My advice is that, although these concerns are of course very understandable, no haemophilia patient has ever developed clinical variant CJD.
The noble Lord, Lord Morris, asked about the calculation of the £3.5 billion—a point mentioned by a number of other noble Lords. A note of how much the department estimated it would cost to replicate the compensation scheme of the Republic of Ireland in the UK has been placed in the Library, and I refer noble Lords to that document.
The question of comparability with Ireland was raised not only by the noble Lord, Lord Morris, but by the noble and learned Lord and the noble Lord, Lord Corbett of Castle Vale, among others. I have taken the opportunity of looking carefully at this comparison. From what I have seen, I am satisfied that the Irish scheme was set up in response to a very specific set of circumstances which are unique to the Republic of Ireland, and I say that not least for the following reason. In an article in the Irish Times dated 5 August 1997, Brian Cowen, then Minister for Health and Children in the Republic of Ireland, and currently Taoiseach, confirmed that the Irish Government knew in 1995 that the Blood Transfusion Service Board had been negligent and had attempted to conceal this fact. I do not believe that I have ever heard the noble Lord, Lord Morris, or others acknowledge the contents of this article.
The noble Lord, Lord Morris, raised the question of Crown immunity in respect of Bio Products Laboratory. I understand that the activities of BPL were covered by Crown immunity and therefore fell outside the requirements of the Medicines Act until 1991. Therefore, it could not be prosecuted under the Act. This immunity did not protect from civil suit but only from prosecution under the Medicines Act. Indeed, some affected persons brought an action in 1988, which was settled out of court. Affected persons did and do therefore have rights of redress in civil law. Our legal advice is that permitting prosecutions under the Medicines Act after all this time would be seen as unfair and oppressive by the courts for various reasons, not least the breach of the European Convention on Human Rights.
The noble Lord, Lord Low, called into question the use of commercial blood products. Most countries experienced similar tragedies as a result of contaminated blood and blood products—even countries that were totally self-sufficient. The fact that the UK domestic blood supply was also contaminated with these viruses does not therefore mean that the tragedy could have been avoided if the UK had been self-sufficient in blood and blood products.
The noble Baroness, Lady Kennedy, asked about the future of benefits in this context. My honourable friend the Parliamentary Under-Secretary of State for Public Health said during the Back-Bench debate in the other place last week that she would be raising the issue of benefit payments with the Minister responsible, and at this point I have nothing to add to that assurance.
I urge the House to consider the Bill very carefully. The contaminated blood issue is enormously emotive, but we should not be passing legislation simply because we have compassion for those affected. All legislation passed by your Lordships’ House must deliver meaningful benefits. I have argued that any changes that this Bill would introduce are limited. Some are impossible to deliver, some are inappropriate, and the tangible benefits that might arise from others are unclear at best. The Bill will not of itself improve patient safety; it will not of itself improve treatment or services; and it will not of itself influence Ministers to agree to more generous ex gratia payments for this patient group. I refer again to the review currently under way. For these reasons, I respectfully suggest to the noble Lord that there is no need for recourse to legislation on the issues that he has brought before us.
Lord Morris of Manchester
My Lords, the speech of the noble Earl, Lord Howe, will cause further despair in the haemophilia community. He will see tomorrow morning in the Official Report the references that I made again and again about the situation in Ireland. The quotation that the noble Earl came out with is somewhat dated. He will find that the timing, the reasons and the case for action taken in the Irish Republic was already on the parliamentary record. He quoted a former Minister. I have been in touch with present Ministers and with Brian O’Mahony, the chief executive of the Irish Haemophilia Society. The Minister can be certain, as I said, that notwithstanding everything that he has said this morning, if the struggle has to go on, then go on it will until right is done to the victims of this worst ever treatment disaster in the history of the National Health Service. I beg to move that the Bill be referred to a Committee of the whole House.