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5.18 pm
Dr. Doug Naysmith (Bristol, North-West) (Lab/Co-op): Although time is precious, I must refer to the very personal speech made by the hon. Member for Spelthorne (Mr. Wilshire). At one stage, he said, I think, that some might consider him a coward. I can assure him that nothing he said sounded in any way like cowardly behaviour to me.
I welcome the opportunity to take part in this debate on Second Reading for two main reasons. As a Member representing a Bristol constituency, I am well aware of the suffering experienced by parents during the events associated with paediatric surgery at Bristol royal infirmary and during the subsequent Kennedy report on those events. The Minister talked of distress, grief and anger. I certainly agree with her about that. Taken with the somewhat similar occurrences at Alder Hey, those events created the impetus to produce the Bill that we are considering today, which ought to ensure that the stress and pain associated with relatives discovering that organs had been retained from their dead loved ones' bodies—without their consent—does not happen again. I very much welcome that, as does almost everyone in Bristol.
My second particular interest is almost professional, in that before being elected to the House I worked as a research immunologist for more than 30 years. My work was mostly in pathology departments and frequently made use of human lymphocytes, lymph node tissue and occasionally other small pieces of human tissue. I know that the uses to which those pieces of tissue were put were at least sometimes of benefit either to the individuals concerned or to other people in the wider sense, and occasionally for both purposes. It is unlikely that specific consent was given for such procedures in every case—hon. Members should remember that I am going back more than 30 years—although I suspect that in almost all cases it would have been freely given if it had been properly sought, albeit that it would not always have been possible.
My right hon. Friend the Member for Holborn and St. Pancras (Mr. Dobson) outlined clearly in his excellent speech the importance of being able to use small quantities of living tissue for experimental and investigative purposes. That conclusion was reinforced by the examples outlined succinctly and clearly by my hon. Friend the Member for Norwich, North (Dr. Gibson).
Although it is clear that the public need to be confident that strict guidelines and procedures are in place to control the use of organs and tissues both from cadaveric and living donors—whether to be used for transplantation, teaching or research purposes—it is crucial that regulations and guidelines are not drawn so restrictively that they inhibit necessary and worthwhile clinical medicine and research.
I have received two letters that illustrate that dilemma. One is from a distinguished emeritus professor of pathology at Cambridge, who believes that the Bill is too long, too complex and badly drafted. He believes that
- "we have lost sight of the proper balance of the rights of the individual and the rights of society".
- "The distinctions between diagnosis, teaching, quality assurance, audit and research are simply not as clear-cut as one might at first think and there are dangers of both defensive practice by pathologists withdrawing from activities which might put them at risk, and also of criminal prosecution for entirely harmless and socially beneficial activities. I would like to see a clear separation between the retention and uses of tissues from the deceased, which is highly emotive for some, and the use of surplus material by NHS laboratories for the common good, which should be allowed to continue without the threat of criminal sanctions."
I know that the Minister has made it clear that she does not see this Bill as a suitable vehicle for the introduction of presumption of consent permission, particularly for organ donation purposes. That is a pity—I have supported such a change for a very long time. I understand why she says that, however. Perhaps it would complicate the Bill too much, and even make it too controversial. It is really good to have all-party support for such an important measure, and I understand why she does not want to prejudice it. I hope, however, that she does not intend to include any provisions in the Bill or subsequent regulations and guidelines that will make its eventual introduction more difficult or even impossible.
5.24 pm
Nick Harvey (North Devon) (LD): I, too, welcome the introduction of the Bill. I have taken an interest in these matters since I was involved in the mid-1990s in helping to uncover the events at the Bristol royal infirmary. It is worth remembering that the parents involved at Bristol went through three subsequent sessions of anguish: first, losing a baby, which is a tragedy in itself; then, some years later, discovering that it was not simply an accident, as they had thought, but part of a wider picture; and, some years after that, coming to terms with the extraordinary news that they had buried babies who were not complete and, without their knowledge, had had parts removed. I want to pay tribute particularly to my constituent, Mrs. Michaela Willis, who, having gone through all that, still found the energy to campaign for an inquiry into the events at Bristol.
I congratulate the right hon. Member for Holborn and St. Pancras (Mr. Dobson) on setting up that inquiry, thus honouring a commitment made by his Conservative predecessor, who had pledged that such an inquiry would be held after the GMC proceedings. I also pay tribute to Professor Kennedy, who diverted slightly from his remit to consider this important matter and report on it separately.
When what had been happening arrived in the public domain, people were astonished. When it became clear that it had been relatively common practice for years and had been going on more or less anywhere, they became more and more astonished and indignant. Immediately after that, the chief medical officer conducted a survey to establish just how widespread the practice had been and how far it had gone. We had meetings here with groups from all over the country who were worried about what had been going on in their local hospitals.
As a result of all those events, the relationship between the medical professions and patients has changed significantly. I do not think that things will ever be quite the same after the events of Bristol. Of course this is not the only factor in the change in the relationship between patients and doctors; the growth of medical information on the internet, for example, has made patients much better informed. The idea that the doctor is always right is part of a paternalistic tradition that, I am glad to say, seems now to be fading.
Many Members have spoken of the importance of striking a balance. They are right: no one wants to thwart medical progress. Recent developments in medical science have already necessitated the use of tissue that has been retained for many years. Who can say what may happen in the next few years? Who can say what new diseases or threats we may uncover, and what scientific breakthroughs may be made? In such circumstances, going back and looking at tissue could be valuable. We must not establish a regime that would prevent that, would traumatise professionals, or would simply make the process of obtaining consent for their important work too cumbersome.
What is most important is the position of patients and relatives, and the principle of informed consent that the Bill rightly attempts to introduce. There is copious evidence that many grieving relatives are only too willing to give consent—that, indeed, they derive comfort from the thought that some good will come from the use of organs or tissue from their loved ones for the benefit of others who may not have to suffer in the same way. It is, however, essential for us to ensure that the arrangements for consent are comprehensive, that consent is informed, that it is obtained sensitively and—as the hon. Member for Wyre Forest (Dr. Taylor) said—that the arrangements are not so heavy-handed that they are impossible to administer.
Presumed consent has been raised several times today. Let me say to those in favour of it that there is a real danger of our undoing the basic good that the Bill tries to do. We are trying to bring about a new climate, a new atmosphere of informed consent and a new relationship between patients and doctors. There is a real risk that presumed consent could undermine that. The hon. Member for Norwich, North (Dr. Gibson) said how easy it was to throw away trust, and how difficult it was to gain it. I merely sound a warning bell to my hon. Friend the Member for Oxford, West and Abingdon (Dr. Harris) and others about the risk of undoing some of the good that the Bill aims to achieve.
Let me also say that the public are nowhere near ready for a system under which they would be expected to opt out. There is not nearly enough public understanding. There would have to be a huge campaign of information and education for people to make sense of the system
and participate in it. Such a campaign would always bring us full circle. As the Minister suggested, that, rather than the legal aspects, might bring about a transformation in organ availability. She pointed out that what was happening in Spain might be more to do with the boost in availability there than with the law itself.I have an old school friend, also a constituent, who has been waiting a long time for a kidney transplant. As far as I can see, he is going to have to wait much longer. He shared one of his concerns with me. He was told—I am not sure that it is still the case—that if people are killed in a road traffic accident in the more remote parts of the west country, even though they have a donor card, have signed up and are on the register, the practical arrangements are simply not in place—in such a sparsely populated area with so many miles of road—to get the organs into the medical system to benefit someone who can make use of them. Much work remains to be done—I entirely accept that the Government have already embarked on some of the necessary good work—on improving the practical arrangements of organ donation.
There is a danger of thinking that the presumed consent issue will be some sort of magical solution; in truth, I am not convinced that it will. I shall keep an open mind when it comes to any votes, but I believe that a warning needs to be sounded that it will not be a magical panacea.
Having said that, the Bill stands every opportunity of providing a valuable legacy for those whose organs were improperly retained and for grieving relatives who went through so much pain, but fought on to see this Bill introduced. It is incumbent on the House to get the detail right. Some hon. Members will deliberate on the Bill in Committee, and I wish them well in that task.
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