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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.
Lord Thomas of Gresford: 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 23 April, if the Government were to take that attitude now, a test action should be brought to see whether they would dare to rely on limitation and dare not to waive the Crown immunity, which they could do. It is also shameful that no public inquiry has been brought by the Government. We await the report of the Penrose inquiry, to which the noble Lord, Lord Jenkin of Roding, and the noble Baroness, Lady Masham, have referred. The fact that documents were destroyed inadvertently is completely unacceptable. The Government did not participate in the Archer inquiry. Suddenly, 5,000 documents emerged after his inquiry was completed. That, too, is completely unacceptable.
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 had 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 23 April, before the Government responded.
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
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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,
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Lord Taylor of Holbeach: 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
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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.
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.
Baroness Thornton: 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 23 February. I thank all noble Lords for their contributions, comments and insights.
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 20 May, the Government published their final response to the report of my noble and learned friend Lord Archer, and we are working to implement the commitments that we made in our response. I will briefly set out how the Government's response has
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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 20 November. The group unanimously agreed that it would be helpful for all parties to better understand how specialised services for haemophilia patients are commissioned and to identify how the Haemophilia Alliance can influence service provision countrywide. The committee will meet twice yearly, but it is also setting up a work stream that will run right through the work of the department with regard to haemophilia. The first meeting also saw a discussion of the terms of reference for the group, which include how new policies will be developed and how the department will be accountable to the community for ensuring that work is carried through.
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 I 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.
Lord Morris of Manchester: 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 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.
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