My Lords, I beg to move that the Bill be now read a second time.
We are met to debate a measure 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, life-long 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. Ninety-five 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 among the hepatitis C-infected patients is still increasing. As of now, an estimated 1,974 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 NHS. If anyone disputes that assessment, they should look at the finding of distinguished statisticians that the disaster involved the haemophilia community in a loss of life more savage in proportion to the numbers of people at risk than the Black Death. While stigma is less explicit today than the warning cross 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 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
""mothers, fathers, sisters, brothers, wives, husbands and friends ... seeing their loved ones die".-[Hansard, 23/4/09; col. 1614.]
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 participants in this debate know, infected haemophilia patients, many of them now terminally ill, also suffer privation at a depth most other people can barely imagine. They speak day by day to me 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 most deeply grateful to all noble Lords who will be speaking in the debate, including my good and noble friend Lady Thornton, who will be replying for the Department of Health. Her awareness of the depth of anguish and despair in the haemophilia community is well understood across the House.
I want at the outset today also most warmly to congratulate my noble and learned friend Lord Archer of Sandwell on the highly prestigious Outstanding Achievement Award he received at this year's parliamentary awards ceremony three days ago. The award was backed by a very wide range of charities, as well as by Members of all parties and of none both here and in another place, for parliamentary service of the highest distinction, and nowhere is that distinction more clearly exemplified than by the landmark importance of the independent public inquiry he headed into the contaminated blood disaster.
I have two interests to declare in the debate, not pecuniary, as president of the Haemophilia Society and as the architect of the inquiry conducted so skilfully and with such excelling integrity by my noble and learned friend. As he knows, I am grateful beyond words both to him and his colleagues on the inquiry team: Dr Norman Jones, emeritus consultant physician at St Thomas's Hospital and Judith Willetts, chief executive of the British Society for Immunology. No inquiry team could possibly have shown more commitment or have been more eminently qualified for the arduous task they so readily and so ably undertook, entirely without remuneration.
I will comment on the Bill clause by clause as we proceed but, taken together, they transform the Archer report into the language of legislation; and my purpose in working during the Summer Recess to prepare this Bill, with unstinting help from Sarah Jones of the Public Bill Office, and on medical issues from Dr Norman Jones, was to guarantee parliamentary time for this House now to debate the Government's response to the report of the inquiry.
Together with noble Lords who took part with me on
"Furthermore, we will of course assist as far as possible in securing a debate on the Government's response".-[Hansard, 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. So there was nothing precipitate in my decision to spend much of the Recess addressing the tasks involved in having this Bill ready for a First Reading in your Lordships' House by
The privation I have described among those affected is addressed in Clause 4 of the Bill, 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 community strongly and repetitively emphasised in evidence to the Archer inquiry. I mention it first today, in referring to Clause 4 of this Bill, because several of the widows excluded from help who wanted very much to be here for this debate have contacted me to say that they simply could not afford the fares; and at a time when just five NHS officials are seen to have been paid a total of almost £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. Clause 1 of the Bill creates a widely empowered statutory committee, with patient and family representation, to advise government on the management of haemophilia; and 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 this debate, 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 treated with blood from donors who have since died of 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 demonstrably is not the case today, a post-mortem on a hepatitis C-infected patient having found variant CJD in his spleen; and Ministerial Statements made to Parliament 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 is about more than the unmet needs of infected patients and bereaved families. It addresses also highly disturbing administrative shortcomings, serious omissions and a failure to inform Parliament of the facts on why provision made in other countries is so much better than here in Britain. For example, there is no mention in the Government's response to the Archer report's findings on 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 states:
"In July 1979, the Medicines Inspectorate visited BPL, following which they reported that the buildings were never designed for the scale of production envisaged and commented that, if this were a commercial operation, they would have had no hesitation in recommending that manufacture should cease until the facility was upgraded to a minimum acceptable level".
Starkly, the Archer report then states:
"BPL was rescued by Crown immunity", adding that:
"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 40 per cent of the national requirements".
That can only mean 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 himself. When responding to exchanges about thalidomide on
"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".-[Hansard, 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 so vitally important 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 the refusals of successive Governments to hold a public inquiry. They were left with no hope of any independent assessment of where responsibility lay for their plight until the Archer inquiry was announced. Of course, the BPL itself 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 the present Government clearly have no intention of reinstating Crown immunity, they cannot 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 in a speech on
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.
Let me first, however, make it 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
"set up their hepatitis C compensation scheme following evidence of negligence by the Irish blood transfusion service".-[Hansard, 25/3/04; col. 796].
That is untrue.
"a judicial inquiry in Ireland found failures of responsibility by the Irish blood transfusion service", had,
"concluded that wrongful acts had been committed", and that the Government of the Republic,
"decided to make significant payments to those infected". -[Hansard, 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 which led to the establishment of a Hepatitis C Compensation Tribunal on a statutory basis on
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 also 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.
To conclude, I want briefly to mention two further issues: first, the treatment by the Department of Health of the Archer inquiry's call for help in securing the financial future of the Haemophilia Society, faced as it is by ever-increasing requests for assistance while, at the same time, trying to cope with the punitive 70 per cent cut made recently in its government grant. That the inquiry's call has not already been met appals noble Lords in all parts of the House. I am especially grateful to the noble Baroness, Lady O'Cathain, for her active support on this issue.
Finally, I want to make it clear in today's debate that sadly, as well as anguish and despair, there is evidence now also of anger in the haemophilia community about the treatment of the Archer inquiry and its report. It was five weeks ago that a then terminally ill, now deceased, haemophilia patient who gave evidence to the inquiry said to me: "While we crossed the whole of Britain to meet the Archer inquiry, Health Ministers refused even to cross the road to do so".
In the interests 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.
My Lords, not for the first time, I congratulate my noble friend Lord Morris, not only on securing a place for his Bill and the clarity with which he introduced it-so making possible this debate-but on his unflagging concern and support over many years for the victims of misfortune. They can have no better champion. With the campaigning skills of the strategist and the unrelenting determination of the bulldog, my noble friend well deserves his reputation. This is not the first tribute that he has received this morning; he received one from my noble friend Lord Graham in the previous debate. Today he has demonstrated all those qualities again. I am grateful for his kind words, but there was no mutual admiration society prearranged between us.
It is sad, as my noble friend said, that he should need to employ those qualities today. His Bill is intended to implement the recommendations of our report, which was published, as he said, nine months ago. The Government have already published their response on
Second Reading is not an ideal vehicle for discussing details, but here it is the detail which conceals either the devil or the archangel. Our first proposal was for a statutory committee to bring together clinicians, researchers, scientific assessors, social workers, officials from the Department of Health and-most importantly-patients, so that all the expertise and experience could come together and there could be an ongoing dialogue. The response is that something of that nature already exists. The Haemophilia Alliance certainly brings together doctors, the Haemophilia Society and others involved in haemophilia care. The response announces proudly that:
"We will invite the Alliance to meet with Government twice yearly".
Twice yearly. We had hoped that there might be a committee provided with a standing secretariat, which would conduct an ongoing dialogue and which could react to new discoveries and new problems on an ongoing basis, whereby those concerned would come to know one another as colleagues. There are models enough for such an arrangement in many other countries.
It brings me no joy to say this, but we did not form the impression that patients feel represented and that they have the ear of government. They feel that their concerns pass unnoticed and that their voices are not listened to. Even the Haemophilia Society does not appear to us to perceive the Department of Health as a committed partner. Indeed, as my noble friend said, the evidence from the society at the time of the inquiry was that it was so unsure of its financial future that it could not guarantee its continued existence. Happily, the Government in their response to our report commit themselves to a subvention of £100,000 per annum for the next five years, together with certain other funding from the department. But will there then be a further period when the society feels that the Government have ceased to listen?
I do not believe that the Government are stonily unsympathetic or that that they are stronger on words than intentions. They have many things on their minds. Tragedies come and go, and good intentions are swallowed up by the next claim on their attention. Perhaps I may be permitted a quotation. The European Association for Haemophilia and Associated Disorders-abbreviated, thankfully, to EAHAD-in a recent paper had this to say:
"Clinicians and patient representatives should be part of national and/or regional haemophilia care decision making in partnership"-
I emphasise "in partnership"-
"with ministries of health and social affairs, as well as those organizations that deliver haemophilia care".
Those words now have the endorsement of the World Federation of Hemophilia and the European Haemophilia Consortium.
Of course, it would be absurd to suggest that nothing is being done. There is a network of provision for those who suffer from haemophilia and those infected with hepatitis or HIV. But the problem with a network is that some people fall through the holes, particularly where they have grown, piece by piece, over the years. They are often brought to the attention of those who can address them, if at all, only by the kind of systematic ongoing dialogue which we try to suggest.
One instance is well known, and has been referred to by my noble friend. It has never been addressed. The Skipton Fund was established in 2003. It may make payments, inter alia, to the dependants of people who have died from infection with hepatitis C, but the scheme was not made retrospective. Therefore, the dependants of those who died before
The Government, in their response, have noted the problems of the Macfarlane Trust and the Eileen Trust. Although there is room for further discussion as to the amount of the provision proposed, the Government say:
"The Skipton Fund will continue to make payments to people infected with hepatitis C and we commit to reviewing it in 2014 when the Fund will have been in existence for ten years".
I repeat: 2014 is five years from now, and we proposed a new system of payments, creating a direct link between the Government and the beneficiaries. That has not been addressed in the response. Five years of their lives are important to the victims. Many are in deteriorating health. The Government's response does not reverberate with a sense of urgency. It may be that in these lean times the department has to fight for candle ends. I fully recognise that. In the context of the national budget, of course, these are candle ends. However, the Government's proposals and our recommendations are not worlds apart. Yet to those whose hopes depend on them, they appear a chasm.
I hope that even if our report remains largely unread on departmental shelves we have at least laid to rest one misconception. It is surely common ground that infection with hepatitis or HIV, in addition to all the other consequences for quality of life, can have a devastating effect on the financial resources of a family. That is one issue which my noble friend's Bill seeks to address.
We are discussing people, some of whom were previously capable of substantial earnings. Some of them, before infection, enjoyed comfortable living standards. Some are now unable to work. Some find their earning capacity greatly reduced. Some have no pension, other than the statutory one. Their living expenses are greater than normal, because they have increased heating bills, special diets and they need domestic help. They are living out their lives in constant struggles that are not of their making. Of course, successive Governments have made some provision for them, although it represents not a generous and spontaneous gesture, but compromises on legal claims, and falls far short of the provision made for victims in other countries-particularly in Ireland, as my noble friend pointed out.
So often the debate has focused on the question of whether the Government should provide adequate financial relief, because it was the fault of previous Governments that the victims were infected. Successive Governments have, understandably, denied that they have a responsibility because the disaster was not their fault. As my noble friend pointed out, on
"A judicial inquiry, the Finlay report, found that 'wrongful acts were committed'. It is important to stress that the blood services in the UK have not been found to be similarly at fault".-[Hansard, 25/3/04; col. 796.]
I direct no criticism at my noble friend Lord Warner, who had to recite the departmental mantra, but that argument is less than persuasive for two reasons. First, to argue that the distinction lay in the fact that blood services in the United Kingdom had not been found by a statutory inquiry to be at fault overlooks the fact that there has not been a statutory inquiry in the United Kingdom because successive Governments have refused to provide one. It is like arguing that dinosaurs were harmless creatures because there have been no recent reports of attacks by them.
Secondly, and more importantly, that argument addresses the wrong question. What matters is not whether any Government were at fault or whether time limits apply but the needs of those who have to live with the consequences. If my neighbour suffers from misfortunes that have not been caused by me, I can harden my heart and say that they are no business of mine, but a Government are not like a private individual-they cannot pass by on the other side. It is the responsibility of a Government to address the needs of their citizens, and it is not a response to say that they should not concern themselves with those needs unless it was the fault of the Government that they came about.
The party that I joined more than 60 years ago discussed those whose needs formed the subject of the Beveridge report, and the Government of that day introduced the National Health Service. They were not concerned only with those whose misfortunes were caused by the Government. In our report, we deliberately declined to address the question of fault liability. I emphasise that we did not say that Governments had not been at fault; we simply regarded that as irrelevant to our mandate. We attempted to survey the past in the hope that we could learn lessons for the future. However, addressing the consequent suffering is not about the past; for the victims, it is the future, and my noble friend's Bill seeks to make that future more tolerable.
My Lords, the House has had the privilege of listening to two very well informed speeches on this subject, and I found them immensely moving. No one who has had anything to do with this matter can be anything but seriously concerned about the impact that the contaminated blood disaster has had on those who have suffered its consequences.
I was the Secretary of State for Health from 1979 to 1981, at the very earliest stages of what was beginning to emerge as a serious problem. One of my predecessors, the noble Lord, Lord Owen, who also gave evidence to the inquiry of the noble and learned Lord, Lord Archer, had already identified from his knowledge as a practising doctor the need for this country to become self-sufficient in blood products. When I followed the late Lord Ennals, we were faced with the same problem; we were not self-sufficient. As I explained to the inquiry, I had on my team the late Dr Gerard Vaughan, himself a distinguished doctor, and I asked him to pay particular attention to this matter, of which he obviously had some knowledge. Sadly, he is no longer with us.
Anyone who has had responsibility in this field must feel not only some sense of responsibility but also some sense of shame that this matter has dragged on for so long. I add my tributes to the noble Lord, Lord Morris of Manchester, and the noble and learned Lord, Lord Archer of Sandwell, for the enormous amount of effort that they have made-the noble Lord, Lord Morris, for a long time and the noble and learned Lord, Lord Archer, with his outstanding inquiry-to try to get to the bottom of the problem and identify a possible solution.
Another group of people also need to be thanked: the private donors who helped to fund the inquiry. As has been spelt out-I do not need to repeat the figures-the expenses were very modest but they involved some tens of thousands of pounds. That sum was found from voluntary contributions because, as has been pointed out, successive Governments have refused to institute a public inquiry financed from the public purse. Despite the handicaps in conducting the inquiry faced by the noble and learned Lord, Lord Archer, and his colleagues, who must also be thanked, they received a tremendous amount of evidence from a great variety of sources, and with great skill they succeeded in distilling it into what is by any standards a formidable report.
My evidence to the inquiry surrounded the fact that I had been invited by one of the haemophiliac sufferers to exercise my right as a former Cabinet Minister to go back and look through the files which would or might have passed across my desk during my period in office. However, as the whole of Chapter 8 of the report discloses, neither the noble Lord, Lord Owen, nor I could find any files in existence. They had all been destroyed. As the noble Lord, Lord Warner, whose name has been mentioned several times already in the debate, admitted in correspondence to me, this was apparently inadvertent. I find that extraordinary. It is very difficult to understand how such a major issue could somehow have been expunged from the records by someone at a low level of responsibility and with no senior accountability and certainly no ministerial accountability.
In those circumstances, it is not in the least surprising that there are those who have harboured suspicions. I have harboured them myself following discussions with senior officials-it is all in the evidence-including the noble Lord, Lord Crisp, who was two or three years ago the Permanent Secretary to the Department of Health. Somewhere along the line, the department had recognised this matter as being most serious. The report notes that it was,
"memorably described by Lord Winston as the worst treatment disaster in the history of the NHS".
I can well understand that the Department of Health has always been very anxious to put this matter behind it. It has, as the noble and learned Lord, Lord Archer, has just said, a huge raft of concerns, some new and some continuing, and it may not wish to dwell too much on this one. However, it remains a problem for the very reason that the noble Lord and the noble and learned Lord have already set out: there are still sufferers out there who have never felt that they have been either properly represented or properly compensated for what they experienced.
It is a pity that the noble Lord, Lord Morris of Manchester, has had to resort to a Private Member's Bill in order to have a full debate on this subject. He deserves tremendous credit for the work that he carried out during the recess in time to turn the report into legislative form, because that is indeed what he has done. It gives us the opportunity to raise some of the issues surrounding this problem, as has already been done by the two previous speakers, but, above all, it gives the Minister an opportunity to reply. Having been in the same position myself, although not on this subject, I express some sympathy with the position in which she finds herself. Nevertheless, I believe that the Department of Health owes a better explanation of, and a greater commitment to dealing with, this problem. We have not had that so far. As the noble and learned Lord, Lord Archer, said, the response published in May was in many respects inadequate, and we are still waiting.
I do not know whether anybody else has been approached, but an inquiry has now been set up in Scotland by the Scottish Minister for Health, chaired by a distinguished judge, Lord Penrose. I know about this because I was asked if I was prepared to give evidence. I said that I would but that I had no more evidence than I had already given to the Archer committee. They also offered to pay my expenses, but I subsequently had a letter saying that that was intended primarily for Scottish Ministers and others, not for Members of the United Kingdom Parliament. However, I have heard nothing more about the Penrose inquiry. It is an official inquiry, instituted by the Scottish Government. No doubt it will make progress in due course. Given the resources behind that inquiry, it will be interesting to see whether it is able to extract more evidence from official sources than did the noble and learned Lord, Lord Archer. We shall have to wait to see whether that is the case. However, in the mean time, I believe that the Department of Health-this is not at all a party matter-owes a considerable obligation to the haemophilia community, and to others who have suffered as a result of this matter, to give a much better explanation of its view of the present situation and how it intends to deal with the sufferers.
When I met the noble Lord, Lord Crisp, then Sir Nigel Crisp, he explained to me that, following a long process of negotiation, the HIV sufferers had been compensated, and that it was as a result of that being put behind them that the files had been destroyed. I said, "But surely they must have known that there were Hepatitis C patients and variant Creutzfeldt-Jakob disease sufferers out there? How could that conceivably have justified the destruction of all the files?". To that I have never had an answer. The noble and learned Lord, Lord Archer, looked at the matter extremely carefully and said there was no evidence of any malicious intent in that because he had no evidence about it at all. However, it makes the problem a great deal more difficult and one can understand that it lies at the heart of much of the pain and anguish suffered by the haemophilia community. Therefore, I am sure that I am not alone in looking forward to hearing the Minister's response. I congratulate the noble Lord, Lord Morris of Manchester, on giving us the opportunity to discuss this issue once again.
My Lords, I add my voice in support of the Bill. However, I shall try to be brief. For a start, it is Friday morning, but, more importantly, others are much better versed in the subject matter, and are better able to deploy the case in detail, than I am. We have heard from three speakers already and more are to come.
No one who has read the report of the independent public inquiry headed by the noble and learned Lord, Lord Archer of Sandwell, or who listened to the debate on that report in your Lordships' House last April, can fail to be shocked by the lack of any sense of urgency, and the catalogue of denial and prevarication that it revealed. Equally, no one who has known and worked with the noble Lord, Lord Morris of Manchester, for as long as I have can fail to be impressed by his tenacity and indefatigable persistence in campaigning for justice for those who suffer misfortune through no fault of their own, or who, as in this case, are the victims of state action or the actions of organs of the state, and I pay tribute to him.
Over a 45-year career in Parliament-one thinks of thalidomide, vaccine damage and the fight for statutory recognition of dyslexia and autism-even after his distinguished tenure of the office of Minister for the Disabled, the first in the world, when many would have been tempted to rest on their laurels, the noble Lord went on to champion the victims of Gulf War syndrome, to fight for a separate War Pensions and Armed Forces Compensation Chamber for the Tribunals Service and now, over many years, to campaign for justice for those who have suffered, in many cases resulting in death, through the administration of blood and contaminated blood products by the NHS. As we have seen, he is a campaigner to be reckoned with. When the Government refused to set up an inquiry not once but twice, he simply went ahead and set up one of his own. In that connection, I add my tribute to the work of the noble and learned Lord, Lord Archer, and his inquiry team.
However, as the noble Lord, Lord Morris, said in the debate on
"no campaigning should ever have been necessary to right the wrongs suffered by the haemophilia community".-[Hansard, 23/4/09; col. 1611.]
The recourse of successive Governments to the device of Crown immunity, requiring sufferers to sign waivers in respect of Hepatitis C in circumstances where they did not know that they might have it but the department knew they were at risk; the resistance to disclosure of documents to the multiparty group; the refusal to hold an inquiry, and then disingenuously relying on the fact that there have been no findings of fault against the British Government; the reliance on discretionary trust funds rather than a system of benefits as of right to provide a measure of compensation; the failure to recognise the claims of widows; and the suggestion that unless a Government are in some way responsible for a misfortune befalling a group of their citizens, they are under no obligation to relieve it, all these things and more can only bring shame on the reputation of this country and its handling of this tragedy, which has been so much less open and generous than that displayed by numerous other countries.
It is not my purpose to trawl back through the history of these matters. Nothing can be done about it now, and in any case the Second Reading of this Bill is not the place to do that. I make reference to it merely to underline the context in which it seems to me that the only honourable course that the Government have today, and the only way in which they can go some way to righting the wrongs that have been done to the haemophilia community, is to give their support to the Bill and to bring the recommendations of the Archer inquiry into effect. This is, after all, a fairly modest proposal; in six clauses it provides for testing, treatment and proper compensation. I should be interested to hear how the Minister could make the case that anything less is due.
I support the proposals for direct financial relief for those who have been infected and for their carers; that there should be a statutory committee to advise the Government on the management of haemophilia in this country with patient and family representation; that there should be free access to National Health Service benefits; and that there should be government assistance with access to insurance. We now have the Government's response to the Archer inquiry, which I fear falls some way short of what the noble and learned Lord, Lord Archer, and his committee asked for. However, I hope that the Bill will prompt Ministers to look again at their proposals. I will leave others to speak about the detail, numbers, money and technicalities; it was the ethics and the attitude which particularly struck me. In responding to the inquiry's recommendation of free access to home nursing and support services, the Government said that the provision of non-residential social care services, such as domiciliary care in England, is a matter for local authorities. This is indisputable as a matter of fact, but does it match up to what the victims of this tragedy deserve, and to the Government's responsibility? These people were harmed by the NHS; it is the Government's responsibility to put that right. Of course the Government could, if they chose, make the necessary arrangements to meet the recommendation. After decades of obfuscation, the people who are awaiting that response deserve something better. The Government are not unable, and they should act.
What chance does the Bill have of reaching the statute book? It would not be the first time that the noble Lord, Lord Morris of Manchester, has made history with a Bill in the wash-up. I hope that the Government will salvage something of the tattered reputation of successive British Governments in this matter, and snatch some measure of victory from the jaws of defeat by helping the noble Lord to do so again.
My Lords, I intend to be incredibly brief in supporting my noble friend Lord Morris. I spoke on
I agree with all that has been said, and I reiterate a point made by the noble Lord, Lord Jenkin of Roding, which is to commend the unsung supporters of the measure who funded the inquiry. Obviously, I pay great tribute to my noble and learned friend Lord Archer; 35 years ago, I was his PPS. The funding, modest although it was, was necessary and important. The fact that we have the Bill proves-I shall be very careful about this-that, first, the Department of Health does not put patients first and that, secondly, we do not have the best health service in the world. If we had, we would not have the Bill; we would have dealt with the issue, as others have. Every time I hear that claim I am irritated by it, simply because of this case of what, to the centre, looks like a bunch of little people. As we heard from my noble friend on the radio this morning, the numbers are getting less. It will solve itself, this problem. That is the unspoken view in Whitehall at present. It is a complete lapse in the good standards of conduct of public administration in this country that we have got to this state. I hope that the Scottish inquiry will uncover more detailed evidence and paperwork that has been kept back than we have in England. Frankly, many of us do not believe what we have been told, but we cannot prove the contrary.
I am grateful to my noble friend for giving way. I just make it clear that 5,000 documents were discovered by the department and given to us too late for us to include them in our report, so we may have some optimism about the Scottish inquiry.
Absolutely. My noble and learned friend reminds me of that incident and the complaints made about it at the time. That may be possible, but, nevertheless, the Government argued for all those years that the information was not there and then, all of a sudden, it becomes available. In other words, they had not applied good administration rules, knowing that an inquiry was being set up which had a good degree of parliamentary support, even though it was unofficial. They refused to give evidence. Then to search for documents and produce them when it was too late to take evidence on them begs the question.
I wish my noble friend well with the Bill. He introduces it at a good time in the parliamentary process. It would have a fair wind if people in the other place got up off their knees and looked at particular issues on behalf of individual citizens-not many thousands of them, there are only a few, but that is what counts, little things mean a lot. If you get the little things right, the chances are that people believe you on the bigger things. There is a good opportunity if the Bill can leave this House and go to the other place before an election is called. As the noble Lord, Lord Low, just said, one does not know: the possibility in the wash-up is enormous. If people want to salvage reputations, that is good.
My noble friend who will reply to this debate has been very good on this issue but, nevertheless, she is going to have a miserable time-not today, but whoever is on that Bench, whether they be the Whip or the Minister, will have a miserable time both before and after the election unless this matter is seen to be dealt with seriously. The impression is being given that the matter will go away, that they are not bothered. Having a Bill in front of us gives us something to get our teeth into and to push for. Whatever the result of the election-it would be nice to get the Bill through beforehand and, as I said, I do not rule that out-if there is any real backbone in the management of the government machine, if whoever is the Prime Minister really wants to deal with this issue, I give them a solution. You send back to the Department of Health an ex-Minister. You find somebody-there are enough of them around on both sides of the House. You send someone back-the civil servants' worst nightmare, a Minister who returns-with the avowed instruction from the Prime Minister to get this sorted.
That can apply whatever the result of the election, because there is a serious issue here. The worry will be: will other similar issues be dealt with in the same way? The fact is that this is now a festering sore. Now that a Bill has appeared, it will keep festering. I use language somewhat more extreme than my noble friend, but he made it quite clear that this is not the NHS at its best, and he will go on, and on, and on. As long as he does that, I will be with him.
My Lords, I have been moved to take part in the debate on the Bill because of the sheer quiet tenacity of the noble Lord, Lord Morris of Manchester. A chance meeting in the Corridor some time ago led to a discussion about his great cause of the moment. As everyone who knows him or has had the pleasure of speaking to him knows, the noble Lord is a wonderful supporter and campaigner for those who have no strong voice. Among them are those on the real margins of society with chronic conditions, who never seem to come across our paths, who suffer and have suffered in silence for so long.
As an aside, it would be wonderful if our powerful media would publicise this cause and if the Haemophilia Society, which is so short of financial support at the moment, were nominated as the Christmas charity by one of the national newspapers for next year-it is too late this year. That is something we can do as a group of people who are deeply concerned. That is about the only thing that I can suggest from a practical point of view, having listened to all the moving speeches this morning. I am not going into the Department of Health to look for lost documents-I would not have any locus there and would be kicked out-but there must be something we can do. Of course, supporting the Bill is the first thing, but that is another idea, and I hope that someone will take it up.
After researching the whole issue of those who are affected-fatally affected-by contaminated blood and blood products after my chance encounter with the noble Lord, and after supporting him in previous exchanges in your Lordships' House, I became more and more depressed and appalled. There is no way that I could not support the Bill, and I do so wholeheartedly.
My sense of depression was somewhat alleviated when I realised that another noble Lord for whom I have the utmost admiration, the noble and learned Lord, Lord Archer, is still deeply involved in this issue. I have read his report. I have to admit that I read it reluctantly, because it made me feel deeply uncomfortable. I was astonished that such a situation could exist and that I could have been oblivious to it. It was rather like the experience I had a couple of months ago when we were examining the Coroners and Justice Bill. I undertook to investigate the issue of the prostitutes exploited and trafficked to provide sex. Of course, the victims of today's debate have no chance of recovery from their dreadful situation.
Let us not forget that we are talking about people with a significantly diminished lifespan. My intervention has been motivated by the huge injustice and by the lack of compassion shown to the victims. As has already been stated, the purpose of the Bill is to provide support for people who have been infected with certain diseases as a result of receiving contaminated blood and blood products supplied by the NHS. They were infected by the NHS. Their illnesses are not a result of a chosen lifestyle. They were infected unknowingly and were the tragic victims of mischance, mistake or negligence.
At this stage, I shall deviate from concentrating on blame because it does not help or strengthen the cause of the victims, and neither will it help the surviving dependants and loved ones. The Bill is a straightforward case of justice and compassion and just deals with a wrong that must be righted. Of course, I know that there are those who will argue that we should apportion blame, and one sympathises with them, but an in-depth analysis of who or what was to blame has already been carried out, and I trust that the factors have been isolated to such an extent that precautionary systems are now in place to make it as sure as one can ever make sure of anything that the root cause will never happen again. Further analysis is not the purpose of the Bill. I reiterate that this is a matter of justice and compassion. We as a nation can hold our heads up high only if we exercise justice and compassion in everything we do. I just hope that the Government will give the Bill a fair wind.
Before looking at the detail of the Bill, I must make it clear that as an economist-I do not often admit that-I am constantly conscious of the financial impact of any measure we blithely put before the Government in which we demand resources to improve a situation. The Bill does not give any indication of the likely cost of the measures proposed but, to be stark about it, the costs will diminish, and with so few tragic people involved, it is unlikely to be hugely costly. Already some £142 million in ex gratia payments has been given to patients and their dependants since 1988, and £46 million is being provided for the NHS to help fund the purchase of clotting factors in 2009-10. I fear I have already strayed into territory that is both unknown to me and distressing. I will leave it to others, but suffice it to say that there is a need for an impact statement so that we can have some idea of the financial impact of the Bill, if, as I hope, it becomes an Act.
The Bill has the great merit of being clear, written in plain English and completely comprehensible to mere lay people like me. Each section seems logical and comprehensive and provides answers to the questions that crowded into my mind when approaching the subject. In addition, it was good to be able to read a technical Bill quickly and understand every word. I fear I cannot resist the temptation to articulate the wish that each Bill produced in our Parliament was so well drafted.
The people who have been treated with, and infected by, contaminated blood and blood products are central to the Bill, and that is how it should be. I fear my heart sank to see that the objective of Clause 1 is to establish a committee to advise on haemophilia-yet another committee! Please do not let it be another quango. I suggest that a time limit be put on the operation of such a committee. I have just one further gentle suggestion about it: a lay person with a reputation for seeing the world through common-sense glasses could bring an additional, different and, probably, helpful perspective. Sometimes the experts get too close to the subject and need a jolt of the ordinary to clear the way.
I now turn to Clauses 2, 3 and 4. Of course, there should be provision for blood donations, a scheme for NHS compensation cards for those affected and provision for the compensation of people treated with, and infected by, NHS contaminated blood and blood products and their widows, dependants and carers. However, here I have a slight moan: what about widowers? I am sure that this is just a drafting point, but I suggest that an amendment be made to the relevant clause to cover them. I particularly approve of the fact that it is proposed that a review will be held within six months of the passing of the Act.
This is an excellent Bill and it would result in improving the lot of those so brutally affected. They are a hidden group. They do not seem to have celebrities promoting their cause. They have been living in despair and without hope. I nearly wept when I heard the description of the five people who wanted to come to give evidence but could not afford the fare. What sort of a society are we? It is time that we all realised that we have a duty of care towards these people, which is all part of justice and compassion. I hope that the Bill has an easy passage through both Houses and becomes law speedily.
My Lords, when I went to the Printed Paper Office and asked for the contaminated blood Bill, a Member of your Lordships' House, who must have come from the other place, said that it does not have time for such matters. My immediate thought was, "Shame on them". The Bill shows the importance of your Lordships' House because it gives time for such humane and important matters and for the scrutiny of legislation. I congratulate the noble Lord, Lord Morris of Manchester, on his continued persistence over this important and heartrending matter. I also congratulate the noble and learned Lord, Lord Archer of Sandwell, on his report, which is of great importance to many people. He will have spent much time and energy over its creation.
I declare an interest as a vice-president of the Haemophilia Society. I know the importance of blood transfusions. My life was saved by them when I sustained an internal haemorrhage at the time I broke my back. In later years, I also had blood transfusions when I became anaemic after travelling abroad. I also know how important it is to have experts who understand blood complications, as my blood group changed from negative to positive.
Patient safety, particularly when working with blood, blood products and transplantation, should be paramount. Health safety has not been given the top priority that it should have been given, and now we have the problems of healthcare-acquired infections and the disasters that your Lordships are discussing today, along with matters that could help the people afflicted and that are stated in this Bill, and I do hope the Bill will come into law.
The contaminated blood disaster has been described as one of the most tragic episodes in the health service's history. When haemophiliacs were infected with infected factor 8 in the early years of HIV, the first husband of my noble friend Lady Campbell of Surbiton, who was a haemophiliac, was infected with HIV and died. They lived in north Yorkshire near where I lived. Seventy-five per cent of the haemophiliacs who were treated at the haemophilia unit in Newcastle-upon-Tyne were infected with HIV from blood products that were imported from the USA. This was because the UK was not self-sufficient in blood products.
I was introduced by a friend to a young man called Jonathan Miller, who was one of the campaigners for help for haemophiliacs with HIV. Jonathan came to lunch with me at my home in Yorkshire, and afterwards told me privately in my study what terrible agony he was in because of his knee joints. He did not want to discuss this with his parents, and I felt privileged that he wanted to share this secret with me. Some time later, I attended his memorial service in London.
Again, in the early days, I heard a distraught father tell how his young son, aged six, and his best friend, both of whom were haemophiliacs and infected with HIV, had been denied a visit to Disneyland because they were HIV positive. They were HIV positive because they had been treated with infected blood products imported from the USA. I felt, and still feel, that the attitude of the USA to these children was unforgivable.
Is it surprising that I support this Bill, which supports infected and bereaved persons? It is not easy having to deal with being a haemophiliac patient, but they have to be dealt with, having been infected by HIV or hepatitis C. Now, 802 patients are known to have had blood from donors who subsequently died of vCJD, which constitutes yet another threat to this community.
A government scientific body has recommended that all red blood cells given in transfusions to children under the age of 13 should be filtered to remove the infection that causes the fatal brain disease of vCJD. Variant Creutzfeldt-Jakob disease is caused by mutated proteins known as prions, which infect the victim's brain, forming sponge-like holes in the tissue and causing a fatal neurodegenerative disorder. Derek Kenny from Portsmouth died of new variant Creutzfeldt-Jakob disease six years ago after being given a contaminated blood transfusion. His widow Judy said: "The idea of a filtration system is excellent. If it was proven to be effective, we ought to use it because that way we can be sure that the blood pool is safe and that everyone receives safe blood". Should filtered blood not be offered to everyone, irrespective of their age? Will the Minister update your Lordships on this today? Is it not time that the Government accepted the recommendations made in the report of the noble and learned Lord, Lord Archer? I hope that the Minister, who I am sure will do her best, will tell us today that a committee to advise on the treatment of haemophilia will be set up without delay.
Haemophilia has lots and lots of complications, as do the conditions hepatitis B, hepatitis C, human T-lymphotropic virus, syphilis and variant Creutzfeldt-Jakob disease mentioned in Clause 2(2). Expert advice needs to be forthcoming for everyone who needs it, and medical and nursing staff need training.
This committee should have been set up years ago so that people could share together for the good of patients and their supporters. A public inquiry into how people were infected with hepatitis C and HIV from contaminated blood has been set up in Scotland. I am a Scot. I read what Lord Penrose said:
"Many people have died. Many of the patients who survive, and the families of patients who died, deserve our deepest sympathy".
Of course they do, but they want and deserve more than sympathy-they want action. This is a running sore that will not heal until there is a satisfactory solution.
My Lords, I thank the House for the opportunity to speak in the gap today. I shall confine myself to three or four quick points because I have spoken in previous debates about the noble and learned Lord's report. I thank him and the noble Lord, Lord Morris, for their persistence with this matter. Their indefatigable campaigning is necessary for this group of people.
I want to set out the context in which I and my colleagues in the Liberal Democrat health team are approaching this matter. Today, of all days, it is easy to make this point: we are told that over the next four years there will have to be £20 billion-worth of savings in the NHS and £36 billion in savings across all government departments. That is the context in which we have to consider this matter.
The question is, therefore, how we as politicians answer the undeniable moral case that has been made for these people and the injustice and suffering that they have undergone. Unfortunately, I suspect the answer to that is not entirely contained in the noble Lord's Bill. My question to the noble Lord, Lord Morris of Manchester, and, most strongly, to the Minister, is: how do we arrive at a position in which the Government work with the people who have been affected by this to determine a set of priorities about how to address the urgent issues of today for some people, as well as the unfolding issues that we do not know about yet for the next 20 or 30 years?
The noble and learned Lord, Lord Archer, was right that it is not acceptable that the Government meet but twice a year with the Haemophilia Alliance. I suggest, as a way forward, that there should be a working group under the auspices of some part of the Government, though probably not the Department of Health, that is tasked with coming up with a plan to deal with this issue now and for the next 20 years or so.
Such a working group should urgently consider an issue that has not been mentioned much today. It is met in the report's eighth recommendation, that there should be a look-back exercise to try to identify those people who may have been infected but may not yet know that. In their response, the Government said that they were committed to doing so. Will the Minister tell us in detail how and when that will happen, and how comprehensive it will be? That will be an important means of finding out the true scale of what is happening.
The people who have been affected by this terrible tragedy demand and deserve justice, ongoing practical help and change. The last thing that we should do is raise their hopes again in ways that are unrealistic. That would be cruel treatment to people whose trust has already been shattered. The most responsible thing that this House could do would be to ensure that there was a realistic and practical response to the issue that was dealt with urgently. I can think of no better way of doing that, and I hope that I speak for all noble Lords who are taking part in this debate, than to send the noble Lord, Lord Rooker, into the Department of Health to do his best, with our best wishes behind him.
My Lords, I, too, pay tribute to the noble Lord, Lord Morris, for his tireless work, and to the noble and learned Lord, Lord Archer, and his colleagues for the report that they have produced.
I welcome the Bill. I am speaking from the Front Bench because I consider this to be a matter of justice. It is a wrong that must be righted, as the noble Baroness, Lady O'Cathain, has pointed out. These are victims who have been damaged by the state, and not entirely inadvertently: from an early stage concerns were expressed about the possibility of contamination in blood products that were being imported from abroad, yet health authorities were permitted to use imported blood products in a way that has been a disaster.
It is shameful that the Government have sheltered behind Crown immunity, which was abolished in 1991. Because they are able to do that, they say that there are no findings of fault. As I said in the debate on
In the past few days, it has been brought home to me that we should not be concerned about just the terrible illnesses, but also the stigma of those illnesses. The noble Baroness, Lady Masham, referred to children who were refused entry to Disneyland. I was told of a woman who, after many years of being widowed, summoned up enough courage to start a relationship with another person. When he learnt that her husband as died of AIDs as a result of contaminated blood, he immediately dropped her. That is the sort of thing that people have to live with. As a result of these things, people are also uninsurable. I welcome the Bill and the chance to come back to this subject, which we debated on
The noble and learned Lord, Lord Archer, has pointed out the wide nature of the committee that he proposed and the need for a standing secretariat. That was met by the Government saying, "Well, we have the Haemophilia Alliance, with which we meet twice a year". No doubt, the Haemophilia Alliance does good work, but it has no representatives from the Department of Health. No patients or families are part of it. It meets once every six months; so, presumably, its departmental meeting is once every six months. There is no statutory requirement for the Secretary of State to consult it. I would suggest to your Lordships that the Government's response to that part of the report of the noble and learned Lord, Lord Archer, is utterly inadequate.
Clause 3 proposes National Health Service compensation cards and access to free National Health Service treatment. In May, the Government's response was to say that they were awaiting the Gilmore review of prescription charges due in the summer. On
Clause 4 deals with compensation, which is the only significant financial obligation in the Bill, and obviously it involves considerable sums of money. The Government say that ex gratia payments are enough. That took me back to the criminal injuries compensation scheme, of which both I and the noble and learned Lord, Lord Archer, were both once members. The scheme was first put forward on an ex gratia basis that was thought to be satisfactory. I resigned when the tariff system was introduced which cut back people's awards. That change was challenged in the courts, and as a result, the Government were forced to place the scheme on a statutory basis. The Government say all the time that victims are at the heart of the criminal justice system, so the victims of crime for whom the Government are in no way responsible now get compensation under a statutory scheme currently running at £200 million per annum. A permanent and ongoing assessment body is in place under a statutory responsibility that will continue year in and year out and which Governments will have to fund.
Here we are dealing with a finite number of people who have been damaged not by criminals, but by the state itself. How can it be said that they should not be under a statutory scheme whereby money is paid directly by the Government to those who have suffered? The ex gratia, lump sum and discretionary payments made to beneficiaries have been increased in response to the Archer report and it is said that repeat applications to these trusts are no longer necessary, but it is a matter of concern to families that they have to go cap in hand to plead their case to the trust if they have particular or special needs. A direct payment under a statutory scheme should be made, as the Bill provides.
Clause 4 irons out artificial distinctions and demands that regulations are put in place that do not draw distinctions on the basis of cause, age, date of receipt of contaminated products, or the date of death. It provides that there should be no means test and no impact on other benefits. The balance between lump sum and periodic payments can take into account the financial circumstances of the country at the time. We are in a bad way at the moment, but I hope that it will not be permanent.
As I have said, this is a question of justice. Compensation should not be a charge on the National Health Service budget because it is a matter of wider government responsibility. We should not accept that compensation paid to the victims of the state's default in this way should in some way affect the provision of care under the National Health Service to other people. I, too, believe that a review within six months to consider the present situation and to make recommendations, as Clause 4 requires, is the right approach. The essential requirement is that the issue should be fully addressed now. The noble Lord, Lord Morris, has given us the figures: some 1,974 people have died as a result of the infections that they sustained. There should be justice for the living who have been damaged by the state while they are still alive. The noble Lord, Lord Rooker, said that the Minister will have a miserable time. So be it, but if a particular Minister feels sorry for him or herself, I would ask them to consider the permanent misery of those who live with what the noble Lord rightly called a festering sore.
My Lords, I do not think I am chancing my arm in saying that all of us in this Chamber approach the subject matter of this Bill with a heavy heart, knowing as we do of the extensive suffering and grief that has given rise to it. The story that the noble Lord, Lord Morris of Manchester, has recounted, and which is laid out in detail in the report of the inquiry chaired so ably by the noble and learned Lord, Lord Archer of Sandwell, is one that can only move us profoundly. I therefore congratulate the noble Lord, Lord Morris, not only on introducing the Bill but on his assiduous championing, over many years, of that group of persons to whom life has dealt the cruellest of hands.
Nearly 5,000 people who received contaminated blood from the NHS in the 1970s and 1980s were thereby exposed to hepatitis C. Of those, more than 1,200 were also infected with HIV. Almost 2,000 have now died as a direct result, leaving behind in many cases widowed spouses and bereaved children. The origins of the disaster have been well described by noble Lords and I shall not repeat them. Successive Governments have taken the view that what happened was an accident which at the time could not have been foreseen or prevented and that no negligence was involved. Nevertheless, both the previous and the current Governments recognised the exceptional hardship inflicted on those haemophiliacs and their families and that, setting aside the issue of causation, what mattered was the well-being of those people in the future. Accordingly, the Macfarlane and Eileen Trusts, followed by the Skipton Fund, were established with the intention of alleviating the financial plight of the victims, a plight which, not infrequently, was severe.
However, it was the conclusion of the noble and learned Lord, Lord Archer, that those arrangements, well motivated though they may have been, were inadequate and flawed and that the time had come for the Government not only to make direct payments to the affected individuals and their families but to set up permanent mechanisms designed to ensure that the wider need of those people should never be lost sight of. Hence the provisions of the Bill which, as we know, closely reflects the recommendations of the noble and learned Lord, Lord Archer.
My noble friend Lord Howe, who very much regrets that he cannot be present for this debate, has spoken to one of the witnesses who gave evidence to the inquiry. As a result of those conversations, he is clear that one of the main hardships inflicted by this disaster is the very poor state of long-term health often experienced by the victims who, as a direct result of having received contaminated blood, have found themselves suffering from incurable and debilitating illnesses. That hardship is frequently made worse by a lack of access to prompt treatment. Little or no recognition is given to the fact that the NHS was instrumental in making these people ill in the first place, or to the idea that there is on that account an enhanced obligation on the system to look after them as well as it possibly can. It is therefore appropriate and unsurprising that both the noble and learned Lord, Lord Archer, and the noble Lord, Lord Morris, should wish to see provision made for access to effective and timely medical treatment for haemophiliacs-a call I fully support.
The anger and frustration underlying the Bill is not hard to discern. As the Archer report spells out:
"The haemophilia community feels that their plight has never been fully acknowledged or addressed".
That complaint surely encapsulates much of the case. I do not doubt that the noble Lord, Lord Morris, would not have thought it necessary to bring the Bill forward had the Government responded more tangibly to the recommendations of the noble and learned Lord, Lord Archer, when they were first published.
It is, of course, for the Government to indicate whether they will now respond positively to the proposals presented here and for the noble Lord, Lord Morris, to press them on the Government as hard as he feels it appropriate to do. Nevertheless, having examined the Bill in some detail, I can say to the noble Lord that there are certain features of it which may not quite do justice to his intentions, and that he might therefore like to consider spending some time in Committee to enable some of the detailed wording to be looked at. For example, I am not certain that the function of the new committee in Clause 1 is described as precisely it ought to be, or that Clause 4 would deliver the kind of financial compensation which it is clear the noble Lord has in mind. There are also some more minor concerns, such as the apparent ambiguity of the territorial coverage of the support arrangements being proposed.
Nevertheless, these are matters of detail which it is inappropriate to rehearse at this stage. More important is the need for us to acknowledge the external reality. The distress of the victims of this tragedy and the uncertainty which they feel about the future came through loud and clear in the report of the noble and learned Lord, Lord Archer. Many simply want official recognition of what went wrong and why, and an acknowledgement of the suffering that they and their families have gone through, as well as a sense of confidence that nothing like the catastrophe that they experienced could happen again.
We are debating this Bill at a time when worry over NHS blood supplies has shifted from contamination by hepatitis C to possible contamination by variant CJD, as described by the noble Baroness, Lady Masham. We do not know, since it is currently impossible to know, how small or great such contamination may have been, but the explicit provision in Clause 2 for the testing of blood for contamination by variant CJD is a clear and appropriate signal that this is a live issue. When it comes to blood safety, we cannot afford to relax our guard.
It was a chain of chance circumstances which led to my involvement in this debate. I have learnt much. I say in all humility that I am very grateful for the opportunity of so doing.
I end as I began, by expressing my admiration for the noble Lord, Lord Morris, for having brought forward this Bill. Not many of us, I suspect, would have remained as undeterred as him by the formidable obstacles in the way of doing so. It is a mark of the noble Lord's deep compassion and sense of humanity that he should have initiated today's important debate. In thanking him for that, I look forward to hearing the Minister's reply and to the Bill's further stages.
My Lords, I congratulate my noble friend Lord Morris on this Bill and on the excellent and moving way in which he introduced it. I also join other noble Lords in paying tribute to my noble and learned friend Lord Archer for his leadership of the independent inquiry into contaminated blood and blood products, whose report was published on
The provisions of the Bill are based on the recommendations of my noble and learned friend's inquiry. Despite my efforts and those of my noble friend Lord Darzi-and, indeed, of the noble Lord, Lord Morris-to secure a debate on the Government's response to the inquiry, we failed with the usual channels, for which I was berating my noble friend the Chief Whip as he was sitting next me just now. We failed to secure time before summer for that debate. For that, I apologise. However, this Bill has given us a welcome opportunity, eloquently taken by noble Lords in this Second Reading debate. I assure my noble friend Lord Rooker, the noble Lord, Lord Jenkin, and in particular the noble Lord, Lord Thomas of Gresford, that I do not feel in the least sorry for myself. I am always delighted to discuss these important issues, although I always also welcome good wishes and sympathy.
The Government fully understand the nature of the appalling tragedy and are fully committed to supporting those affected by it. We continue to work to provide ever safer blood and blood products. We are also committed to consulting haemophilia stakeholders in developing a new policy, to which the noble Baroness, Lady Barker, referred, on the treatment of people with haemophilia. This will be an ongoing process covering all aspects of their treatment and care and will forge links with other groups-for example, specialised commissioners, as required in the health service.
I fully recognise the passionate commitment of my noble friend Lord Morris to this important cause. I congratulate him on the successes that he has already achieved. Today I have a number of reservations about whether there is a need for recourse to legislation. On
Clause 1 provides for a statutory committee to advise on the treatment of haemophilia. However, the majority of the Department of Health's advisory committees are not established on a statutory basis. Instead, we are now meeting twice yearly with the Haemophilia Alliance, which is an existing UK-wide partnership between patients, haemophilia doctors and others involved in their care. I emphasise the issue of patients and their families; several noble Lords have suggested that they are not listening, and I hope that my remarks will refute that contention.
The first meeting, which was very productive, took place on
The next meeting date is to be agreed, but it will be in the new year. I am just making the point that this is not a twice-yearly meeting but a meeting about a work stream. Similarly, the group agreed to a Department of Health proposal for a workshop for patients, carers and health professionals about vCJD. We are planning to hold this workshop during March or April 2010. The outputs of this workshop will be used to help to inform future communication with the haemophilia community about the risk of vCJD. I hope that noble Lords will see that this has come about without legislation and with a commitment from the Government.
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 same agents. I can confirm that testing for all but one of the specified agents is already available to haemophilia patients, if their clinicians advise they are needed, and that all blood donations are screened for the same conditions. The sole exception is vCJD, for which there is currently no validated test available, but I shall update the House later with where we are on that issue. Therefore, we cannot legislate on something that it is currently not possible to implement.
Clause 3 provides for a scheme of NHS cards for those infected through treatment with contaminated blood and blood products, which would enable access to NHS benefits free of charge, including prescription charges. The Prime Minister has already announced our intention to progressively phase out prescription charges in England for patients with long-term conditions. Professor Ian Gilmore has completed a review of prescription charges in England that considered how to implement and phase in the Prime Minister's commitment. We are considering the recommendations and will publish the report and a response to the recommendations and action in the new year.
The other services specified, such as counselling and physiotherapy, are already available in England under the NHS, where needed, while statutory guidance to local authorities on charging for non-residential social care services already makes it clear that they should assess and take into account service users' specific needs, and costs associated with their condition or disability. That includes any additional costs related to living with chronic infections.
I confess that am puzzled about Clause 3(3), which provides for priority access to NHS treatment for haemophilia patients whenever possible. We need some clarification. Does that not run counter to the fundamental principles, now enshrined in the NHS constitution, that the NHS provides a comprehensive service, based on equality and fairness, that is available to all, with access based on clinical need? I am sure that my noble friend does not mean that one patient group should be treated differently from others.
I am grateful to the Minister. She may know that I have close links with the ex-service community; in particular, that I have been honorary parliamentary adviser to the Royal British Legion now for 21 years. In that case, Ministers-and I was myself Minister for war pensions in the 1970s-have all through the years made it clear to general practitioners that in view of the special position of the ex-service community for contracting with the state to lay down their lives in its service, there should be an element of priority. Thus there is one precedent for saying that where the state feels a special responsibility for the illness or disabilities of patients, priority is defensible.
I thank my noble friend for that clarification, but he needs to address that issue in the Bill itself.
I turn now to Clause 4. In his report my noble and learned friend Lord Archer recommended that levels of financial support to those affected by this tragedy should be similar to those paid in Ireland. I will take a moment to discuss the issue of Ireland, because the situation there is quite different from the situation here in the UK. There has been some confusion around the background to the establishment of the Irish payment scheme and the reasons for it, so it is worth taking a moment to explain the background.
Between 1977 and 1984, a large number of Irish women were infected with hepatitis C following treatment with a contaminated blood product. As a result, the Irish Government set up an expert group to look into the issue, which reported in January 1995. The expert group found that wrongful acts had been committed by the Irish Blood Transfusion Service, which led the Irish Government to set up the Irish Hepatitis C Compensation Tribunal to operate on a non-statutory basis to review claims for compensation arising from the many civil actions pending in the courts.
Following the report of the expert group, the Irish Government set up the Finlay tribunal of inquiry, which reported in March 1997. This also found that wrongful acts were committed. Following the findings of the Finlay tribunal, the Irish Government placed the Irish Hepatitis C Compensation Tribunal on a statutory footing.
The report of my noble and learned friend Lord Archer stated that,
"the Inquiry did not consider it appropriate to apportion blame, especially given the problems attendant on hindsight".
I think that he is right. In recognition, however, of the plight of those affected, the Department of Health has set up the payment schemes that have already been mentioned by various noble Lords.
Does the Minister appreciate that it is unlikely that Crown immunity applied in Ireland when actions were brought against the state for what it had done? Ireland recognised its responsibility by holding a public inquiry, which found fault. That is something that this Government have never done.
My Lords, I will return to Crown immunity and the inquiry in a moment. So far, more than £45 million has been paid out for HIV through the Macfarlane Trust.
I hope my noble friend does not think that I am being tiresome; I am grateful to her for giving way. This is something that we ought to clarify. Is it the Government's position that they are under no obligation to relieve suffering that has not been the fault of the Government? That is the issue.
The Government relieve suffering that they have no obligation to relieve in many different ways. Indeed, they are doing so in this case, too.
I return to the clause that we are addressing. I absolutely appreciate that people feel very strongly and are angry about this issue. We have decided to increase payments to those infected with HIV to a minimum of £12,800 each. The two trusts have the power to make discretionary payments to infected individuals as well as widows and dependants within the annual budget allocation available to them. In addition, the Skipton fund has so far paid nearly £100 million to those infected with hepatitis C. The Government have committed to review the Skipton fund in 2014. I look forward to the findings of the Penrose inquiry in Scotland; we should take those into account.
I have a great deal of personal sympathy with the remarks of my noble and learned friend Lord Archer about the review date. Perhaps I need to ask my honourable friend in another place to look at this again. I understand the plight of those affected by this tragedy. That is why we have already paid almost £150 million to those affected.
In Clause 5 of the Bill, which requires a review of several issues, all of which were covered in our response to the report of my noble and learned friend Lord Archer, again the question is put of whether there is any benefit in putting this work on a statutory footing. For example, in respect of insurance, the Association of British Insurers has assured us that insurers do not treat haemophilia patients or those affected only with HIV or hepatitis C differently from people with other pre-existing conditions. In all cases, a person's insurability and the level of premiums are determined by the assessment of their individual risk. Clearly, there are likely to be costs in obtaining such insurance. That is one of the factors that the Government took into account in deciding to increase the annual payments to those infected with HIV to a minimum of £12,800.
I return to some of the particular points raised by individual noble Lords. My noble friend Lord Morris and the noble Baroness, Lady Masham, raised issues to do with vCJD. What have we done to address those issues? Evidence of variant CJD infection was recently found in the autopsy of a haemophilia patient in their seventies, who died from unrelated causes. However, the patient had displayed no symptoms of variant CJD or any other neurological conditions prior to death. Haemophilia patients who receive donor-derived clotting factors have previously been informed by clinicians of their increased risk of exposure to vCJD via clotting factors. This finding will undoubtedly have caused concern, as mentioned by the noble Baroness, among those who suffer from haemophilia and other bleeding disorders. However, the finding does not increase the risk to those patients, or mean any change to the way that they are treated. Our priority has been to address the patients' concern and ensure that they are able to obtain advice about this new finding and how it may affect them. This is an important part of our work with the Haemophilia Alliance.
The noble Baroness, Lady Masham, asked about filtering blood and prion filtration. The Spongiform Encephalopathy Advisory Committee, which is the Government's independent expert scientific committee on vCJD, recommended that filters undergo independent efficacy trials. The blood service has commissioned an independent assessment for the efficacy of prion filters currently on the market and is undertaking its own assessment of the quality and clinical safety of filtered red cells. As the results become available, they are considered by the UK National Blood Service's prion removal working group. The independent committee on safety of blood tissues and organs, SaBTO, with which noble Lords will be familiar, will advise on whether this technology should be considered for introduction. SaBTO has recently advised that it considers that there is now sufficient evidence that a particular filter is able to reduce infectivity in a unit of red blood cells, and has recommended the introduction of filtered blood to under-16s subject to satisfactory completion of clinical trials to assess safety. We are undertaking an evaluation of the cost, benefit and impact of implementing that recommendation.
The noble Lords, Lord Morris and Lord Thomas, referred to Crown immunity. I do not feel that the subject is appropriate, partly because it is not really included in the Bill. However, I will say that I understand that the activities of the BPL were covered by Crown immunity so were outside the requirements of the Medicines Act until 1991. That immunity protected not from civil suit but only from prosecution under the Medicines Act. Indeed, some affected person brought action in 1990 that was settled out of court. Affected persons therefore have the right of redress through civil law. However, our legal advice is that an act of retrospection to permit prosecutions under the Medicines Act after all this time would not be accepted by the courts as valid.
My noble friend Lord Morris and the noble Lord, Lord Jenkin, asked why the Department of Health did not give evidence. Indeed, I shall address several inquiries about evidence together, including those from the noble Lord, Lord Thomas, and my noble friend Lord Rooker. The noble and learned Lord, Lord Archer, asked that someone from the department meet him, and officials have done so on several occasions. I would say that we had gone further than any previous Administration in making information for the relevant period available. In total, 5,500 official documents have been released, and Department of Health officials have met the inquiry team several times to talk them through the documentation. Given that no one working in the department has direct knowledge of these events from the 1970s and 1980s, there is no additional evidence that any individual could contribute to the inquiry.
We regret deeply that some documents were inadvertently destroyed. However, I repeat that 5,500 documents relating to the period have been released and are on the website. I am sad that my noble friend Lord Rooker berated me and suggested impropriety in the department. However, he is right that there is still work to be done. Maybe his suggestion, supported by the noble Baroness, Lady Barker, has merit. The last tranche of the documents were indeed released after the inquiry had completed its consideration, but we partly released them in good faith, to show that we were trying to be transparent. They were available to the public and of course have been made available to the Penrose inquiry.
The noble Lord, Lord Low, asked about financial relief. There are good reasons to maintain the established mechanism for paying for financial relief. The Eileen Trust and the Macfarlane Trust have developed good relationships with their registrants over the years. This is not a case of going cap in hand. There is a discretionary element in the size of payments that they make. Those decisions are best made by the charitable trust, with its deep understanding of the small group of people with whom it works, rather than by civil servants.
The noble Baroness, Lady O'Cathain, and other noble Lords raised the issue of funding to the Haemophilia Society. We are providing £100,000 to the Haemophilia Society each year for five years to enable it to move to secure financial funding. In addition, there are always possibilities for it to contract with the department on other, project-based issues. She also raised the issue of the future safety of blood. The European directive set standards of quality and safety for the collecting, testing, processing, storage and distribution of human blood and blood components. NHS Blood and Transplant is responsible for ensuring a sufficient, safe supply of blood to meet the needs of patients in England and north Wales. This includes a clear responsibility to minimise the risk of blood transfusions transmitting infection to patients. The Independent Advisory Committee on the Safety of Blood, Tissues and Organs advises the UK health departments on blood safety measures.
The noble Baroness, Lady Masham, raised the issue of our self-sufficiency in blood products, as did the noble Lord, Lord Jenkin. The Department of Health reviewed its surviving documentation evidence from the period when the decision to pursue self-sufficiency was made and found no evidence to suggest that the hepatitis C outbreak in the late 1970s and early 1980s in this country could have been avoided if self-sufficiency had been achieved. In other words, the issue was one of science. By the early 1980s there was evidence that commercial provision, from the United States, and UK plasma concentrates carried a similar risk of transmitting hepatitis. The review was published in 2006 and is available on the Department of Health website.
The noble Baroness, Lady Barker, referred to the look-back exercise. The Department of Health has agreed to fund such an exercise to ascertain whether patients not already identified with bleeding disorders might have been infected. The work is currently under way with the United Kingdom Haemophilia Centre Doctors' Organisation to put this in place. It will take a while to trace all these patients, but we hope to be able to report on progress in the summer of 2010.
I hope that noble Lords will not think that my remarks suggest that this Government are not listening or not taking action. We certainly regard the Haemophilia Society and the Haemophilia Alliance as partners in the progress that we need to make on this very important issue. We have put our money where our mouth is. I also recognise that this is never enough. The noble Baroness, Lady Barker, as ever, pointed to moral, realistic and practical questions.
In conclusion, many of the provisions in the Bill are either already in place, or are being put in place. Because of that, we believe that there is no need for recourse to legislation on this issue. I have also pointed to some technical issues regarding the Bill. I know that the arrangements that are in place might not always be as far-reaching as some noble Lords wish they would be. We need continually to strive to improve services for haemophilia patients and others affected by this tragedy. It is only right that I should finish by restating on behalf of the Government my deepest sympathy for those affected by this tragedy and restating our continuing efforts on their behalf.
My Lords, I am deeply grateful to every participant in the debate, by no means least to my noble friend whose challenging task it was to respond. All the points raised today can be considered as proceedings on the measure go forward. A working group of the type suggested by the noble Baroness, Lady Barker, could well be appointed to work alongside the statutory committee for which Clause 1 would provide; indeed, that committee could itself set up such a working group. Meanwhile, I much agree with the noble Baroness that we must look forward and plan, not simply react to problems.
On the question of the reappearance of the 5,000 documents that were shredded "inadvertently" by an unnamed official at the Department of Health, what happened was that copies of the documents were found in the office of a Scottish legal firm, but too late for the noble Lord and learned, Lord Archer, to take account of in the report of his inquiry. It was the first case in history that shredded documents have had a second coming. Long may they be kept under lock and key, especially at the Department of Health.
There are other Bills awaiting the attention of the House and, in fairness to their promoters, I conclude there.
Bill read a second time and committed to a Committee of the Whole House.