Contaminated Blood (Support for Infected and Bereaved Persons) Bill [HL]

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 20 May. If my noble friend’s Bill proceeds to Committee, I hope we will be able to discuss in detail some elements of that response. We are grateful that there was a response, but it is disappointing that it came with no previous discussion on a "take it or leave it" basis. I am aware that there have subsequently been meetings between Ministers and the Macfarlane Trust, and between Ministers and a cross-party group of concerned colleagues. We had hoped that it might at least have been possible to establish a more sustained dialogue. Perhaps my noble friend on the Front Bench—who we are delighted to see with us again and to whom I pay tribute for her readiness to discuss these issues—might take back that suggestion. 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 29 August 2003 are not eligible. They have slipped through the net. Then there is provided a window for dependants of those who died before that date and 5 July 2004. But dependants of those who died after the latter date are eligible only if the victim had applied to the fund before dying. Those distinctions are artificial. They do not reflect the merits or the need. For those excluded, the cause of death is the same, the tragic loss is the same and the financial needs are the same. But they are not eligible for payments. 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 25 March 2004 my noble friend Lord Warner, whose misfortune it was to have been provided with the departmental brief, sought to explain the distinction between the relatively generous financial provision in Ireland and the less fulsome provision in the United Kingdom. In Ireland, he said, ""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".—[Official Report, 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.