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

Lord Morris of Manchester Excerpts

Friday 22nd October 2010 Lords Chamber

Moved By

[Lord Morris of Manchester]

That the Bill be read a second time.

[Lord Morris of Manchester]

My Lords, I beg to move that this Bill be read a second time, and in doing so I wish to pay warm tribute to the officers and staff of this House who together have made it possible for me to be here notwithstanding the severely incapacitating effect of a recent injury. I have interests to declare, not pecuniary, as president of the Haemophilia Society and as the architect of the independent public inquiry into contaminated NHS blood and blood products presided over by my noble and learned friend Lord Archer of Sandwell.

I am grateful to all noble Lords who are here to take part in debating a profoundly important legislative proposal, conceived and drafted to give solace and support to arguably the most needful minority in Britain today.

A small and stricken community of barely 5,000 people, already disabled by a rare, lifelong blood disorder requiring continuous medical treatment—haemophilia patients—have twice been infected en masse by contaminated blood and blood products used in their NHS treatment. Over 95 per cent were infected with hepatitis C, and one in four with HIV. Of the 1,243 haemophilia patients infected with HIV, only 361—29 per cent—are still alive; and the much higher number of deaths from hepatitis C infection is still increasing. As of now, an estimated 1,994 haemophilia patients have died from being infected by contaminated NHS blood and blood products in this worst ever treatment disaster in the history of the National Health Service. If anyone disputes that assessment, they should look at the findings of distinguished statisticians that the disaster has involved the haemophilia community in a loss of life more savage in proportion to the numbers of people at risk than the Black Death in the mid 14th century. While stigma is less explicit today than the warning cross then scrawled on a plague victim’s door, it is no less cruelly oppressive in terms of social exclusion at a time of direst need.

Yet even the grievous and still ascending death toll does not tell the whole story of the suffering inflicted on the haemophilia community. As my dear and brave and inspirational friend, the noble Baroness, Lady Campbell of Surbiton, whose husband was among the haemophilia patients fatally infected, so movingly said in this House on 23 April, the history of the contaminated blood disaster is one of unspeakable suffering also for,

“mothers, fathers, sisters, brothers, wives, husbands and friends … seeing their loved ones die”.—[Official Report, 23/4/10; col. 1614.]

I want again today warmly to congratulate my noble and learned friend Lord Archer of Sandwell on parliamentary service of the highest distinction in conducting his independent inquiry into the disaster so skilfully and with such excelling integrity. I honour more than words can say both him and those who worked side by side with him in producing his landmark report: Dr Norman Jones, former emeritus senior consultant physician at St Thomas’s Hospital, and Judith Willetts, chief executive of the British Society for Immunology. No inquiry team could have possibly shown more commitment or have been more eminently qualified for the arduous task they so readily and ably undertook, entirely without remuneration.

For parliamentarians there can be no higher duty than to ensure just treatment and due care for people afflicted and bereaved by life-threatening medication supplied by the state; but as every participant in the debate knows, infected haemophilia patients, many of them now terminally ill, also suffer privation at a depth most other people can barely imagine. They speak to me day by day of no longer being able to work full time, if at all; of having been made uninsurable by the prohibitively expensive premiums demanded of them by insurers; and, among numerous other burdens, of costs generally being too high for them to cope with.

I am especially indebted to my noble friend Lord Corbett of Castle Vale for his help in enabling me to cope with the incapacitating effects of my injury in preparing for this debate. I am also indebted to the noble Lord, Lord Owen, from whom I received a movingly supportive letter this morning. Had he not been meeting commitments in Greece when the debate was announced he most certainly would have been here.

I shall comment on the clauses of the Bill as we proceed but, taken together, they transform the Archer report into the language of legislation. My purpose in working for most of last year’s Summer Recess to draft this measure—with unstinting help from Sarah Jones of the Public Bill Office—was to guarantee parliamentary time for this House to debate both the Archer report and the Government’s response to its findings.

Like other noble Lords who took part with me on 28 April 2009 in a debate to amend the Health Bill then before the House, I thought that we had an assurance very close to that guarantee from my noble friend Lord Darzi, then a junior Health Minister, speaking for the Government and having just announced that their response to the Archer report would be published at an early date. He went on to say:

“Furthermore, we will of course assist as far as possible in securing a debate on the Government’s response”.—[Official Report, 28/4/09; col. 143.]

Yet in the three months that then elapsed before the Summer Recess, there was no sign anywhere on the parliamentary horizon of a debate being arranged. Thus there was nothing precipitate in my decision to spend much of that Recess addressing the tasks involved in having this Bill ready for a First Reading in your Lordships’ House by 19 November. Indeed, it was then already nine months after the publication of a report the recommendations of which were vitally important to afflicted patients and the bereaved families on the day they were published in February last year.

The privation I have described among those afflicted is addressed in Clause 4, which deals specifically also with the crudely discriminatory treatment now of widows of infected patients in deciding whether they are eligible for financial help solely on the basis of when their husbands died, even where they died within two days of each other from exactly the same cause. The ending of that discrimination was one of the issues of longstanding concern to the Haemophilia Society and was strongly and repetitively emphasised in its evidence to the Archer inquiry. I mention it first today, in referring to Clause 4, because several of the widows excluded from help, who wanted very much to be here for the debate today, have contacted me to say that they simply could not afford the fares—and this at a time when just five NHS officials are seen to have been paid a total of £6 million over the past year.

Clause 4 addresses the whole range of compensation issues and has been welcomed as fair and balanced by commentators on social policy of wide experience, as was the Archer report itself all across the media. Everyone knows that there will be costs in giving full effect to the report, but there will also be priceless benefits in enabling haemophilia patients to live fuller and more fulfilling lives.

Moreover, the cost will be nothing even remotely approaching the £3 billion price tag put on the Archer recommendations by people, including commentators in the media, who had never even spoken to my noble and learned friend Lord Archer; but happily he is here this morning to speak for himself. Of course, costings should also include the high cost to the taxpayer of legal action by the Department of Health with such unsuccess.

Clause 1 creates a widely empowered statutory committee, with patient and family representation, to advise government on the management of haemophilia; Clauses 2 and 3 deal with blood donations and improving medical care; while Clauses 5 and 6 are about monitoring progress and the effects of regulations made under the legislation.

Turning to issues not dealt with in the Government’s response to the Archer report but worthy of close attention in the House, there is the spectre now of a third deadly scourge facing haemophilia patients. In response to Parliamentary Questions about the growing number of haemophilia patients known by the Department of Health to have been infected with blood from donors who have since died from variant CJD, I was told on the authority of the Chief Medical Officer that the risk of infection in such circumstances was purely “hypothetical”. That is demonstrably not the case today, a post mortem on a hepatitis C-infected patient having found variant CJD in his spleen. Ministerial statements on this further scourge urgently need updating. We also need to know how the Government now assess the variant CJD threat to the haemophilia community.

As the House knows, the Archer report was about more than the unmet needs of infected patients and bereaved families; it addressed also highly disturbing administrative shortcomings, serious omissions and a failure to inform Parliament why provision made in other countries is so much better than here in Britain. For example, there was no mention in the Government’s response to the Archer report’s findings of the behaviour of the Blood Products Laboratory in failing to comply with requirements of the Medicines Act 1968. This is a hugely important issue, as is that of the effect of using Crown immunity to avoid any question of legal redress.

The Archer report stated that the,

“BPL was rescued by Crown Immunity”,

adding that the BPL’s,

“existing plant continued production, relying on Crown Immunity to dispense with all the requirements of the Medicines Act, but was able to meet only about 40% of the national requirements”.

That can mean only that, by the use of Crown immunity, a relic of feudal England, the lives of countless haemophilia patients were put blatantly and gravely at risk.

The seriousness of this had already been underlined by my noble friend Lord Darzi. When responding to exchanges about thalidomide on 10 March 2009, he referred to,

“the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly”.—[Official Report, 10/3/09; col. 1059.]

Could there be any clearer text than that for condemning the BPL's use of Crown immunity to dispense with all the requirements of that renowned and vital statute?

From whom was the BPL rescued by its use of Crown immunity? First, of course, it was rescued from those afflicted and bereaved by the disaster. At a stroke, they were denied any right to legal redress, a denial made all the more cruelly unjust by refusals of successive Governments to hold a public inquiry. They were left with no hope of any independent assessment of where responsibility for their plight lay until the Archer inquiry was announced. Of course, the BPL was rescued from any danger of censure by the courts. Crown immunity was abolished by John Major in 1991, and the afflicted and bereaved ask why, since it is clear that the present Government had no intention of reinstating Crown immunity, they could not now review the claims of those from whom the BPL was rescued by that immunity.

The noble Lord, Lord Thomas of Gresford, who is much respected here and outside the House for his role in this policy area, said on 23 April that it would be possible for actions to be brought now, dating back as necessary, if the Government chose to waive Crown immunity. Thus the question today is whether the Government, opposed as they must surely be to restoring Crown immunity, have considered this possibility or will now do so. At the very least, Ministers could review the claims, where it is still feasible to do so, of the victims of contaminated NHS blood from whom the BPL was rescued by Crown immunity. If anyone thinks there is no way now of our being able to do any more to help the afflicted and bereaved, they should look at how the Irish Government found ways of compensating victims there by more than anything even contemplated by Ministers for NHS-infected patients.

In this regard, it must be made absolutely clear that the Government of the Republic did not, as stated in this House by my noble friend Lord Warner, briefed by and speaking for the Department of Health on 25 March 2004,

“set up their hepatitis C compensation scheme following evidence of negligence by the Irish blood transfusion service”.—[Official Report, 25/3/04; col. 796.]

That is untrue. It was again wrong for the Department of Health to have briefed Gillian Merron, then a junior Health Minister, to tell the House of Commons that,

“a judicial inquiry in Ireland found failures of responsibility by the Irish blood transfusion service and concluded that wrongful acts had been committed. As a result, the Government of the Republic of Ireland decided to make significant payments to those affected”.—[Official Report, Commons, 1/7/09; col. 130WH.]

Brian O'Mahony, chief executive of the Irish Haemophilia Society, who was personally involved in the negotiations with the Department of Health and Children in Ireland in 1994 and 1995 that led to the establishment on a statutory basis of a hepatitis C compensation tribunal on 16 December 1995, has written to me to say that my honourable friend's statement to the House of Commons was “misleading and erroneous”. He goes on to say that the compensation tribunal heard its first cases in early 1996 and that the first award for persons with haemophilia was made in March 1996. He concludes:

“Therefore the establishment of the Hepatitis C Compensation Tribunal, and significant payments by the Tribunal, pre-dated the setting up of both the Finlay Tribunal established in October 1996 and the Lindsay Tribunal of Inquiry set up in September 1999”.

I also have a letter from Kay Maher of the Republic's Department of Health and Children confirming Brian O'Mahony's statement, which concludes:

“I hope this will serve to clarify the sequence of events in Ireland for Ms Merron and I trust that her department will now correct the record”.

I look forward to hearing the department's response to that extremely important request.

Before concluding, I must inform noble Lords that sadly, as well as anguish and despair, there is evidence now also of anger in the haemophilia community about the Department of Health's treatment of the Archer inquiry and its report. It is five weeks ago that a terminally ill haemophilia patient, now deceased, who had given evidence to the inquiry, said to me with bitterness: “While we crossed the whole of Britain to meet the Archer inquiry, Health Ministers refused even to cross the road”.

The same intensity of feeling is seen also in the Haemophilia Society’s reaction to a recent letter sent to Chris James, its chief executive, by Anne Milton MP, a junior Health Minister, saying how appreciative she was of his involvement to date. It said:

“I do hope you will feel able to continue to work with me and my officials as your input is invaluable”.

In a letter I received from Chris James yesterday, he expressed deep annoyance at her suggestion that he had been working in close consultation with her and said that the truth was that he had met briefly with her only once since the election and had made it emphatically clear to her that the Haemophilia Society wanted full implementation of the recommendations from the noble and learned Lord, Lord Archer. Only that, he said, could ease the suffering of the afflicted and bereaved. He said also that it was utterly disgraceful for the Government to have chosen to ignore Mr Justice Holman’s findings in the High Court in the case of the Department of Health v Andrew March.

Chris James also tells me that one of his members, David Leadbetter, who is severely afflicted as a result of contaminated NHS blood, met the Prime Minister for 15 minutes as his constituent on 2 July. He writes:

“David was very touched by the Prime Minister’s empathy for his plight and was told by him that the issue would be dealt with urgently and in a positive way”.

At that meeting, David Leadbetter asked David Cameron whether he would also meet me, as president of the Haemophilia Society, to discuss the Government’s approach. His response was that he would “readily do so”.

I have not so far been asked to see David Cameron, but I am, of course, well aware of his warmly supportive attitude to the Haemophilia Society’s desire for urgent closure on just terms in a letter to Chris James on 18 June last year. In the society’s view, all that he has said contrasts sharply with the language now used by Anne Milton and explains the growing anger across the haemophilia community.

In the interest of creating hope in place of anger, let me assure the haemophilia community as a whole that it has in this House both a ready understanding of its despair and an unbreakable resolve that if this struggle has to go on, then go on it will until right is done. I beg to move.

--- Later in debate ---

[Lord Morris of Manchester]

My Lords, perhaps I should explain why I made that provision. Other people know all the statistics about the disaster, but I personally knew hundreds of its victims—and now, day by day, I hear of the deaths of valued friends. That is why I approached this in the way that I did. As honorary parliamentary adviser to the Royal British Legion for many years, since 1985, I know that the priority that their members are given under the National Health Service is never abused. No one has ever said that disabled ex-servicemen abuse that privilege. I am certain that the Haemophilia Society will act just as honourably as those who so readily give their lives in the service of this country.

[Earl Howe]

My Lords, I respect greatly the points that the noble Lord, Lord Morris, has made. Nevertheless, it is difficult to enshrine in legislation priority access to NHS services for an individual group of patients. That is the real issue, but of course I shall reflect the point that he has made.

As I have indicated, the issue is whether patients infected with contaminated blood receive prompt access to the necessary treatment, based on clinical need. I have heard no reports that anyone in this patient group faces difficulties in this regard. I therefore argue that nothing in the Bill would improve treatment or services for those affected by contaminated blood beyond what is already on offer from the NHS or the Department of Health, or is being considered by Ministers.

I turn now to the critical issue of making sure that no similar tragedies occur in future. The Government are firmly committed to ensuring that the blood supply is as safe as possible, and we continue to work to provide ever safer blood and blood products. Clause 2 provides for haemophilia patients to be offered testing for a number of specified infectious agents, and for blood donations to be screened for those agents; yet testing for all but one of the agents is already available to haemophilia patients, and all blood donations are screened for those same agents. The sole exception is variant CJD, for which there is currently no validated test available. We cannot legislate on something that it is currently not possible to implement. The Bill rightly acknowledges that the list of agents for which the blood supply is screened needs to be kept under constant review. There are effective systems in place to ensure that this is done, both within the UK blood services and also through the Advisory Committee on the Safety of Blood, Tissues and Organs, SaBTO—which I can assure the noble Baroness, Lady Finlay, will continue to exist. Therefore, there is no need to replicate this function on a statutory basis.

The Bill also provides for the introduction of prion filtration. The Government are currently undertaking an evaluation of the costs, benefits and implications of prion filtration to inform our decision on whether to implement this recommendation. We do not need primary legislation to do this.

Finally, blood safety is regulated by European directives that set standards of quality and safety for the collection, testing, processing, storage and distribution of human blood and blood components. Blood products such as clotting factors are regulated in accordance with the Community code for medicinal products. Therefore, there is nothing in the Bill that would improve the safety of the blood supply. I fully support the principle of making the blood supply as safe as practically possible, but it is not appropriate to use legislation to require the blood services to adopt a specific technology such as prion filtration. Such legislation cannot properly take account of emerging scientific advances, and it is important for the blood services to retain the flexibility to introduce the most appropriate measures on the basis of expert advice.

I now turn to the subject of Clause 4, the issue of compensation. In recognition of the plight of those affected, the Department of Health has already set up ex gratia payment schemes for those infected with HIV and hepatitis C. It is worth pausing to lay out the level of financial support currently available to people in this group. Those infected with HIV receive a flat-rate payment of £12,800 a year. They may also be eligible for additional discretionary payments. In the year ending April 2010, the average total payment to an individual infected with HIV was £17,400. Those infected with hepatitis C are eligible to receive an initial one-off lump sum of £20,000 when they develop chronic infection. Despite contracting the virus, some people will make a full recovery. However, others may go on to develop serious liver disease. For this group, there is a second one-off lump sum payment of £25,000. All these payments are tax-free and are not counted when calculating individuals’ eligibility for state benefits. Therefore, if they are unable to work for health reasons, they will receive state benefits in addition to these payments.

One of the key elements of this clause is subsection (4), which states that,

“the Secretary of State shall have regard to any comparable compensation schemes offered in other countries”.

I should like to inform the House that previous Governments did indeed have regard to comparable schemes when the Macfarlane and Eileen Trusts for HIV were first set up, and we are taking account now of schemes elsewhere. The current payments for those with HIV generally compare very favourably with payments in other countries, and I direct that remark particularly to the noble Lord, Lord Low of Dalston.

I acknowledge that there are anomalies between the current payments for HIV and those for hepatitis C, whose payments are less favourable. That is why the Department of Health’s current review includes payments for hepatitis C, as well as looking into whether there are any alternative payment mechanisms. In the light of that, the House needs to consider what purpose there is in trying to legislate on this issue.

Finally, Clause 5 requires the review of a number of issues which were covered in the previous Government’s response to the report of the noble and learned Lord, Lord Archer. Again, the question is whether any benefit is to be gained from putting this work on a statutory footing.

The one issue in Clause 5 on which I should like to comment specifically concerns medical insurance. I am aware that patients infected with HIV and/or hepatitis C by contaminated blood either cannot obtain health insurance or are subject to a significant premium loading. However, one of the underlying rationales of the welfare system here in the UK is to provide services for those who cannot obtain insurance, for whatever reason. The whole point of the NHS is that people should not need private medical insurance. For the state to assist a particular uninsurable patient group to obtain private medical insurance would, I believe, set a dangerous precedent that could undermine the core principles of our welfare system.

In conclusion, I should like to address a few of the questions raised in this debate, dealing first with some of those raised by the noble Lord, Lord Morris. He asked what the Government have done in relation to the recent case of variant CJD having been found in a haemophilia patient. My advice is that, although these concerns are of course very understandable, no haemophilia patient has ever developed clinical variant CJD.

The noble Lord, Lord Morris, asked about the calculation of the £3.5 billion—a point mentioned by a number of other noble Lords. A note of how much the department estimated it would cost to replicate the compensation scheme of the Republic of Ireland in the UK has been placed in the Library, and I refer noble Lords to that document.

The question of comparability with Ireland was raised not only by the noble Lord, Lord Morris, but by the noble and learned Lord and the noble Lord, Lord Corbett of Castle Vale, among others. I have taken the opportunity of looking carefully at this comparison. From what I have seen, I am satisfied that the Irish scheme was set up in response to a very specific set of circumstances which are unique to the Republic of Ireland, and I say that not least for the following reason. In an article in the Irish Times dated 5 August 1997, Brian Cowen, then Minister for Health and Children in the Republic of Ireland, and currently Taoiseach, confirmed that the Irish Government knew in 1995 that the Blood Transfusion Service Board had been negligent and had attempted to conceal this fact. I do not believe that I have ever heard the noble Lord, Lord Morris, or others acknowledge the contents of this article.

The noble Lord, Lord Morris, raised the question of Crown immunity in respect of Bio Products Laboratory. I understand that the activities of BPL were covered by Crown immunity and therefore fell outside the requirements of the Medicines Act until 1991. Therefore, it could not be prosecuted under the Act. This immunity did not protect from civil suit but only from prosecution under the Medicines Act. Indeed, some affected persons brought an action in 1988, which was settled out of court. Affected persons did and do therefore have rights of redress in civil law. Our legal advice is that permitting prosecutions under the Medicines Act after all this time would be seen as unfair and oppressive by the courts for various reasons, not least the breach of the European Convention on Human Rights.

The noble Lord, Lord Low, called into question the use of commercial blood products. Most countries experienced similar tragedies as a result of contaminated blood and blood products—even countries that were totally self-sufficient. The fact that the UK domestic blood supply was also contaminated with these viruses does not therefore mean that the tragedy could have been avoided if the UK had been self-sufficient in blood and blood products.

The noble Baroness, Lady Kennedy, asked about the future of benefits in this context. My honourable friend the Parliamentary Under-Secretary of State for Public Health said during the Back-Bench debate in the other place last week that she would be raising the issue of benefit payments with the Minister responsible, and at this point I have nothing to add to that assurance.

I urge the House to consider the Bill very carefully. The contaminated blood issue is enormously emotive, but we should not be passing legislation simply because we have compassion for those affected. All legislation passed by your Lordships’ House must deliver meaningful benefits. I have argued that any changes that this Bill would introduce are limited. Some are impossible to deliver, some are inappropriate, and the tangible benefits that might arise from others are unclear at best. The Bill will not of itself improve patient safety; it will not of itself improve treatment or services; and it will not of itself influence Ministers to agree to more generous ex gratia payments for this patient group. I refer again to the review currently under way. For these reasons, I respectfully suggest to the noble Lord that there is no need for recourse to legislation on the issues that he has brought before us.

[Lord Morris of Manchester]

My Lords, the speech of the noble Earl, Lord Howe, will cause further despair in the haemophilia community. He will see tomorrow morning in the Official Report the references that I made again and again about the situation in Ireland. The quotation that the noble Earl came out with is somewhat dated. He will find that the timing, the reasons and the case for action taken in the Irish Republic was already on the parliamentary record. He quoted a former Minister. I have been in touch with present Ministers and with Brian O’Mahony, the chief executive of the Irish Haemophilia Society. The Minister can be certain, as I said, that notwithstanding everything that he has said this morning, if the struggle has to go on, then go on it will until right is done to the victims of this worst ever treatment disaster in the history of the National Health Service. I beg to move that the Bill be referred to a Committee of the whole House.

Bill read a second time and committed to a Committee of the Whole House.