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Lord Campbell of Croy: My Lords, I hope I may intervene but we do have plenty of time in this timed debate. The announcement, in answer to a Question of mine, was in October 1988. It stated that the McFarlane Trust was going to be set up. Therefore, that was rather earlier than the time of the 1992 election.

Baroness Jay of Paddington: My Lords, I am grateful to the noble Lord. I suspect he will recall that although there was a decision to set up that trust it was not funded, and payments were not made until very much later. I suspect he will find that that occurred nearly four years later. I would in any case suggest that the general point I was making—I think I am right about the timing of the funding and the payments under the trust—was as I have described and that there was a somewhat unpleasant discussion between the many people who were concerned about this issue.

I echo the admiration of my noble friend Lord Ashley of Stoke for the Minister and for the stand that she takes on many of these issues. I hope that in this case she will see that it would be a just and graceful course of action to recognise the force of the arguments which my noble friend has made so eloquently and not wait to act until

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there is what I suspect might be a surge of rather angry public opinion. I know that the Haemophilia Society is now co-ordinating another campaign on this subject which may ultimately force a decision on the Government.

3.56 p.m.

The Parliamentary Under-Secretary of State, Department of Health (Baroness Cumberlege): My Lords, I very much welcome the opportunity to discuss the role of the McFarlane Trust but I have to say I am disappointed that the noble Lord, Lord Ashley of Stoke, should feel that I try to fob off your Lordships' House. That is never my intention—in this debate or any other. I respect your Lordships' House and I try to be fair, honest and direct. But the noble Lord, as an experienced parliamentarian, will recognise there are occasions when a Minister gives answers which are not those sought by noble Lords opposite and which prove disappointing to them.

I agree with my noble friend, Lord Campbell of Croy, that this is a difficult and complicated question which requires more time than has been available through Starred Questions. I take this opportunity to pay tribute to him for his foresight in raising the subject as early as 1987. Perhaps I can put the noble Baroness, Lady Jay, right. The McFarlane Trust was set up in November 1987 with government funding of £10 million and the purpose of making grants and weekly payments to HIV infected haemophilia patients and their families. The work of the fund is regularly reviewed. Its income was increased by a further £5 million in March 1993.

The running costs of the trust are met by a Section 64 grant so that the whole of the capital sum is available for the beneficiaries of the trust. Since its inception the trust has given out £14 million. That is in addition to £66 million in special payments. The trust carries out its work both caringly and conscientiously and I know that both patients and the Government appreciate the way in which the trustees have approached and indeed carried out their task. My noble friend can rest assured on that.

As your Lordships will know, the trust was established to deal specifically with those haemophilia patients who were infected with HIV as a result of receiving blood products.

Your Lordships will be aware that there are many instances where people have reacted adversely to drug therapy or medical treatment given in good faith where non-negligent harm has occurred. Although those suffering as a result have pressed for government compensation, the Government have not accepted liability. In these incidents haemophilia patients received the best treatment available in the light of the medical knowledge at the time.

Contrary to the views expressed by the noble Lord, Lord Ashley, the Government have accepted that the patients who, tragically, contracted HIV through NHS treatment were in a different position from others and we have made provision for them because of their special circumstances. As my noble friend Lord Campbell of Croy stated, those affected were all expected to die very shortly. In addition they were

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subjected to significant social problems, including ostracism. For instance, people were treated as lepers. They had their doors daubed with graffiti; they lost their jobs; and their children were not allowed to mix with other children at school. They were denied a normal married life.

In the case of the infected haemophilia patients, the problems of HIV were superimposed on the health, social and financial disadvantages they already suffered as the result of their hereditary haemophilia. I know that the noble Lord, Lord Ashley, is anxious that those patients with haemophilia who may have been infected with Hepatitis C should receive similar consideration to the HIV victims. But if an exception were to be made there would be others who would argue that they too were deserving. The noble Lord, Lord Ashley, and the noble Baroness, Lady Jay, may have forgotten that when payments were agreed for haemophilia patients with HIV, representations were subsequently made on behalf of blood transfusion recipients infected with HIV. After the settlement the campaign was intensified and payments were made to that group too.

Although patients receive the best treatment available, based on existing knowledge, it has to be recognised that not all medical interventions are risk free. Risks may be evident at the time of treatment or may be discovered later. If we were to offer payments for each such incident we would soon slip into a general no fault compensation scheme.

The noble Lord, Lord Addington, and the noble Baroness, Lady Jay, made a point of drawing a distinction between compensation and ex gratia payments. It does not really matter whether we call it compensation or ex gratia payments. The arguments against both are the same. Additionally, I stress that the majority of the payments made were not ex gratia since an undertaking had to be made not to take the matter to the courts.

Your Lordships will be aware that the Government are opposed to a no fault scheme. There are sound reasons for this. First, proof of causation is still need. It may be just as difficult to establish that the medical treatment has caused injury as it is to prove that someone has been negligent. It also has to be demonstrated that it was not a foreseeable and reasonable result of treatment. It would be unfair to others in that those whose plight was the result of a medical accident could be compensated whereas those whose condition stemmed, for instance, from disease or birth would not. The costs of any such scheme would be substantial and would inevitably impact on the amounts available for patient care. Health care negligence is not considered to be fundamentally different from negligence in other walks of life where claims for compensation are resolved through the courts. In addition, the present system arguably has a deterrent effect on malpractice. No fault compensation might conceivably encourage doctors to be less cautious.

The experience of other countries which have tried to follow the no fault path has strengthened the Government's views. In New Zealand, whose system is most often quoted, several major problems have become

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apparent. The costs of the scheme have proved to be extremely high. Estimates of more than 1 per cent. of GDP have been made. In addition to a number of other practical difficulties, the scheme also effectively denies people access to the courts.

In Sweden a different scheme operates. The payments made are relatively small. Indeed, it was necessary for the authorities to make additional payments to those infected with HIV because of the inadequacy of the sums available through the no fault scheme.

I do not wish to minimise the impact of Hepatitis C on those who have been infected. For some it is a real tragedy, not only for themselves but for their families and friends. The Government have every sympathy for them. However, it has to be acknowledged that Hepatitis C is different from HIV. Many people infected with Hepatitis C may enjoy a long period without any symptoms appearing.

The noble Lord, Lord Ashley, presented figures on the natural history of Hepatitis C which were similar to those available to my department. However, I would put the figure for chronic hepatitis at 50 per cent., and 80 per cent. for those who do not recover fully after infection. Noble Lords will forgive me for repeating some of the estimates.

Fifty per cent. of sufferers may progress to chronic Hepatitis C with varying degrees of good and ill heath. Perhaps 20 per cent. of patients will develop cirrhosis, a progressive destruction of the liver that may take 20 to 30 years. The majority of those years will be trouble-free in terms of ill health and only a very small percentage will actually die of liver disease.

We readily acknowledge that each death is an individual tragedy for the family concerned. If we look specifically at haemophilia patients, the Haemophilia Society has stated in a press release launching its current campaign that over 40 people with haemophilia have died as a result of infection with Hepatitis C virus. It is important that we retain a clear sense of proportion and timescale. The figures quoted by the society relate to the five years between 1988 and 1993. I understand that, for example, in 1993 12 haemophilia patients died with the cause of death shown as liver disease. That was out of 126 haemophilia patients known to have died in that year. Of those 12, eight were also HIV positive. I seek in no way to minimise the tragedy but these are small numbers when weighed in the balance of the good that treatment has brought to many of these and countless other haemophilia patients.

My noble friend Lord Campbell of Croy asked about women haemophiliacs. I understand that virtually no women are haemophiliacs. There is a similar disease called von Willebrand's disease which affects both men and women, and some patients have contracted HIV and/or Hepatitis C.

I can assure the noble Lord, Lord Addington, that the Government remain very concerned about the position of people who have been infected with Hepatitis C. Discussions are taking place between the department and the directors of the haemophilia centres about what needs to be done. We need to develop further good practice for the treatment of people with haemophilia who are also Hepatitis C positive and to ensure that they

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have ready access to treatment centres. The department is supporting an initiative by the Haemophilia Society to undertake a study into the best way to support its members who are infected with the virus.

It is the Government's view that the most effective use of finite resources is to seek to improve the understanding, management and treatment of the condition. I know that that view is shared by the majority of clinicians in the field. Only in this way can the impact of the disease on individual patients and their families be effectively minimised.

4.6 p.m.

Lord Ashley of Stoke: My Lords, I am very grateful to those who have taken part in the debate. I echo the regret of my noble friend Lady Jay about the small number who have participated because we regard this as an important debate.

I am afraid that I must put the noble Lord, Lord Campbell of Croy, right. He said that I may not have known about what happened here seven years ago. In fact, I was one of the activists in another place on precisely this issue. I attended all of the meetings dealing with the campaign at that time although I was not a Member of this House then. I am more than happy to give way to the noble Lord.


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