Health: Contaminated Blood Products — Debate

Part of the debate – in the House of Lords at 12:56 pm on 23rd April 2009.

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Photo of Baroness Barker Baroness Barker Spokesperson for Health 12:56 pm, 23rd April 2009

My Lords, I am delighted to congratulate the noble Lord, Lord Morris, and the noble and learned Lord, Lord Archer of Sandwell, as well as the noble Lord, Lord Turnberg, on producing a fascinating report into a complex series of issues. It is a commendable document in every sense. Sitting down to read it a couple of weeks ago, in preparation for this debate, brought back memories from the early 1980s: of friends of mine becoming ill and, later, starting to die and of fear, prejudice and hysteria about the new illness, which at that point had no name but seemed to affect minority groups disproportionately. I remembered that at the time somebody had produced a T-shirt with the slogan, "Prejudice Kills". The report that we read today shows how long and devastating the effects of prejudice can be on the health of a nation; I have no doubt that the fear and prejudice that were around then led to many of the problems for people that the report of the noble and learned Lord, Lord Archer, so eloquently describes.

Noble Lords have heard me talk before about the American book And the Band Played On, written by Randy Shilts, which attempted to document the origin and spread of HIV on the west coast of America. In that book, Randy Shilts looked at the incidence of illnesses and how different communities responded to them. There is a startling point when the staff of the Center for Disease Control in Atlanta have figured out that the thing, whatever it is, is a blood-borne entity. They go along to meet the charities that, in the United States, were responsible for what was a commercial activity—the collection and distribution and blood. They try to explain their suspicions about the unfolding disaster to those charities, and to the companies and doctors who work with them. The charities ignore them, because they cannot afford the commercial decision to take their advice. In the book, the gentleman from the Center for Disease Control says, "When doctors become businessmen, where does someone who needs a doctor go?". I remember reading that and thinking, "Thank goodness I live in the UK where we have a National Health Service and these issues cannot arise". Then along comes the report of the noble and learned Lord, Lord Archer.

Let me pick up on the points made by the noble Lord, Lord Rooker, about why the noble and learned Lord's report is as it is. If this matter was being discussed in America, it would be sorted out in court, because it would be an issue of commercial liability. In Britain, it is not. We have the National Health Service. Consequently, the responsibilities of politicians and the Government are different. That is why it is important to fulfil some of those roles that the noble Lord, Lord Rooker, set out so well. We must guide the Government towards the role that they have to play, which is not just to mitigate the terrible devastation that has been wreaked on individuals but also to consider the good of public health.

When I have worked on issues of medical negligence, particularly during the passage of the NHS Redress Bill, I have always come away in the knowledge that the victims of medical negligence principally want three things. They want to know what happened and why, because they want to prevent the same mistakes from happening to others, and they want acknowledgement of their suffering. Only rarely do they want to ascribe blame, but sometimes they need financial reparation to enable them to deal with the devastation that has been wreaked on them. In so far as it could, the report of the noble and learned Lord, Lord Archer, attempts to do the first and the third of those things. It does not deal with preventing similar mistakes or deal directly with financial compensation, nor should it, because that is the role of the Government. I shall concentrate on those two issues.

On reading such a report, one's first instinct is to ask what lessons we can learn for the future. However, it is important to acknowledge that we are talking about a period of about 35 years, during which a great deal changed. There has been extensive development of clinical knowledge; for example, the diagnosis of viruses is different. There have been changes in medical ethics and the way in which patients are involved in decisions about their treatment. Protocols governing patient information and consent to trials have changed. We now have the National Patient Safety Agency, NICE and the Healthcare Commission, which is now rolled into the CQC, all of which are involved in the development and auditing of standards of safety.

However, some issues are timeless; they tend to be the boring, basic issues, such as record keeping and the integrity of data. Since those days, there has been one big change in the NHS. Management and government in the NHS have become far more fragmented and complex. We do not work so much to national standardised systems. Therefore, when the Government respond, I hope that they will take from the report of the noble and learned Lord, Lord Archer, the need to ensure that the basic systems of information and the basic principles about data retention are enduring. In these days of electronic communication, greater attention should be given to the training of civil servants and officials in the Department of Health than ever there was in the past in order to ensure that something like this is never repeated.

I should like to ask the noble Baroness, Lady Thornton, in her reply, or later, to think about another difference. A few weeks ago, she and I were involved in the debate on the report of the noble Lord, Lord Soley, into the role and efficacy of international organisations in the detection and containment of infectious diseases. I commend that extremely good report to noble Lords. The noble Baroness will remember that we talked about how the systems of surveillance and the ways in which treatment information is transmitted internationally have become much more important than they were in days gone by. Given the report of the noble and learned Lord, I should like her to comment on the current state of the Government's domestic systems of surveillance for infectious diseases and to say whether the international systems to which the Government subscribe are of a sufficient standard to ensure that a disaster of this kind could not happen again. On what basis would she have confidence that it would not?

Noble Lords have alluded to the three or four trust funds set up to compensate the victims of contaminated blood products. I shall make a few points on that. First, we have a number of trusts, all of which have different criteria, all of which have specific limitations on which they can work and all of which are based on a principle that they are there to mitigate and to offer relief. They do not work in the same way as other compensation schemes, such as that involving compensation to accident victims, whereby the victims are given a sum of money to use in whichever way they choose in order to deal with the issues in their lives resulting from an accident. I do not understand why in relation to these diseases the Government have taken the form of charitable trust that they have as their model. Why is that so?

Secondly, many of the beneficiaries of those trusts now have a longer life expectancy than was ever envisaged when those trusts were set up. In the light of that, does the noble Baroness agree that not only the levels of compensation but the way in which those trusts are administered need to be reviewed? Finally, on a technical point, I picked up in the report that the reason why there are so many different trusts seems to be based on a technicality of charity law. Does the noble Baroness agree that it is perhaps time to review the existence of those different trusts to see whether they could be rationalised and run more efficiently as one?

I shall finish with a few questions that I hope will enable us to glean from this report lessons that are applicable now. Will the Government advise people who were treated with NHS blood products between 1973 and 1986 to be tested for HIV and hepatitis C? In so doing, will they notify them of the existence of the Macfarlane Trust? That seems to be exactly the point made by the noble Lord, Lord Rooker. The Government have an enduring role not just reactively to mitigate the terrible personal circumstances of individuals but proactively to attend to issues of public health. This will go on for many years. The latency period of these diseases is such that there are people who will not know about their status for some considerable time.

Secondly, in the 2000 audit review of the Advisory Committee on the Virological Safety of Blood, a recommendation was made that new and existing staff should receive training about the importance of record keeping and observing guidance. Is that being done for all new staff? Are the conditions under which the testing of blood products is conducted kept under continuous review? How often is the review system tested?

The noble and learned Lord, Lord Archer, is absolutely right to state that we cannot undo the past. All we can do is acknowledge the failures of our national health system. If we do nothing else today, in making our attempt to ensure that prejudice no longer kills people, we should take the advice of the noble Lord, Lord Rooker, and acknowledge that it is the role of government to ensure that the standing of the health service is as high as it can be so that people can have confidence in the NHS as the body that oversees public health in this country. If we can do that, in our own way we will have contributed a fitting testimony to the people who have died as a result of this terrible tragedy.