§ Order for Second Reading read.12.40 pm
Mr. Kenneth Clark (Rushcliffe)
I beg to move, That the Bill be now read a Second time.
Official statistics show that, over the five years from 1995 to 1999, about 1,000 patients died in this country while on the waiting list for an organ transplant. The British Medical Association, to which I am indebted for its support and advice on this matter, would go beyond that and say that the figure understates the number of people who died for lack of an organ transplant operation. More people died who were not yet on the waiting list, and one must also consider the thousands of people who die because dialysis facilities are not available.
The Bill addresses a serious health problem. In the House, we more often debate matters of organisation and money, but this is a straightforward human problem of being unable to provide in our health service the facilities for medical treatment that could save life and dramatically improve quality of life.
The situation has not been getting better for some years. The general tendency is for the list of those waiting for organ transplants to get longer, while the number of operations being carried out has tended to drop and is currently lower than it was 10 years ago. The Bill is designed to minimise the waste of human life involved in the failure to get treatment for those who need it.
The problems that lie behind the stark statistics and the needless deaths go much wider than the law. Everyone knows that we need to campaign to get more people to volunteer to be donors if they should fall victim to a tragic accident or disease, but the number of people carrying donor cards or on the register is not the most important factor. My only mild criticism of the Government on the subject is that, at their recent organ summit—which was a welcome step that they took to ensure that no one misunderstood the implications of the Alder Hey tragedy and discouraged the transplant programme, which is an entirely different issue—they concentrated too much on imploring people to carry donor cards or put their names on the register.
I, too, want to encourage people to carry cards and put their names on the register—the vast majority are in fact willing to be donors, but only a minority get around to carrying the card—but the problems go way beyond that and turn on a whole range of issues, including medical procedures and arrangements for using the register, that lie outside the scope of the Bill. The Government, especially following the recent summit, are addressing those issues and reviewing both the law and the practice on the subject. I hope that that leads to some clarity about the role of transplant co-ordinators and provides some assistance to hard-pressed staff in intensive care units and elsewhere by putting in place facilities to enable those who are in possession of a body of someone who has tragically died and who has suitable organs for donation to get in contact with surgeons who have patients and facilities waiting for organs to become available.
1336 The scale of the changes required could be considerable. I would commend to the Government the recommendations of the Royal College of Surgeons, which include
the establishment of a National Transplant Service for the UK in order to ensure that organ donation and transplantation is viewed as a national service rather than being governed and operated at a local level … the new service … would take over the existing work of the UK Transplant Support Service Authority and … would take on responsibility for: a national strategy for delivery of transplant services; designation of transplant units; evaluation and maintenance of standards; organisation of multi-organ retrieval; recruitment, training and administration of donor transplant co-ordinators; development of initiatives to increase cadaveric donors; development of patient protocols; encouragement and facilitation of multi-centre trials; independent audit and determination of policies concerning practice; co-ordination of education and publicity; and national representation.I broadly support those recommendations which indicate that the Government should undertake a major review of the field and come up with some substantial and worthwhile proposals to make sure that the provision of organs and the carrying out of operations match the considerable humanitarian demand.
Let me make it clear that the Bill addresses a small part of the process because the legal problems involved are quite tiny. There are however, legal doubts surrounding the issue because the legal position is based on the Human Tissue Act 1961 and from time to time doubts have been raised about the ability of health authorities, trusts, doctors and others carrying out surgical procedures to be absolutely certain that they are within the law.
There has been no legal challenge so far, but as we live in an increasingly litigious age we all understand why absolutely everyone in any of the clinical professions is more aware now of the risk of someone, however cranky, bringing a legal action against them in certain circumstances. Any doubts about their legal position will create further doubts, delays and hesitation. Therefore, having found myself in the ballot for private Members' Bills, I wished to draw the House's attention to the issue as many right hon. and hon. Members feel strongly about it, but the one matter that I could address was the comparative footnote of sorting out some minor problems in the law to make sure that no risk of litigation will arise in future.
§ Mr. Peter Bottomley (Worthing, West)
Let me emphasise what my right hon. and learned Friend has said and put it to him that were there to be challenge, there would almost certainly be an absolute stop to transplants until the law was clarified. Even if that took only a month, the chaos that would be caused for people looking for a kidney transplant, eye grafts or other transplantation would be horrendous That is why he is absolutely right to try to sort out this minor problem as well as getting across the more general point that the gift relationship of giving consent to organ transplants is vital.
I am grateful to my hon. Friend and I am sure that he is right. In the present circumstances, there has to be only a hint of a possible legal problem and the slight possibility of litigation in this highly sensitive area for everyone to be seriously deterred from carrying out transplants.
As I am tackling a very small difficulty, the Bill does not open up any of this wider issues that would arise from a thorough review of the subject. Big ethical issues 1337 surround organ transplantation, and I have no doubt that if the Government decide to change the law after their review, they will find themselves considering such difficult matters as the presumed consent of those who have died, so that organs may he taken unless there is evidence that consent has not been given. They will have to address the law on living donors— those who willingly donate a kidney to a relative or friend. When the Government finish their review, they will find themselves in a difficult position, and I trust that they will introduce legislation to advance on the provisions of the Human Tissue Act 1961. That will not be easy.
I took the Human Fertilisation and Embryology Act 1990 through the House as Secretary of State for Health, and laws of that kind give rise to wide and far-ranging debate. They cut right across ordinary political divisions, giving rise to endless free votes and anxious discussion in the House. I have not addressed such wide issues in this Bill. It would have been reckless to do so, and the legal change that I propose falls strictly within the confines of present practice.
I emphasise that the Bill does not touch on present practice. No organ transplantation can take place from a cadaver unless those taking part are satisfied that the person who had died would have been willing for that to happen. No transplantation can take place unless reasonable steps have been taken to ensure that consent has been obtained from close relatives. That can be difficult and sensitive in itself, of course, as the relatives involved are normally at their most distressed and least clear-thinking at the time when a doctor, nurse or other member of hospital staff must explain matters to them.
The Bill addresses narrow points and does not change present practice at all. Clause 1 tries to address a slight doubt about the wording of the 1961 Act. The Act refers to what a "person lawfully in possession" of a body may do to facilitate transplantation. That has never been challenged in court, but continual doubts are raised about who the person lawfully in possession is. In practice, it is usually thought to be the health authority, until someone asks for the body to be placed in his or her custody as the closest relative. There is no reason for any doubt to exist. My Bill would substitute the wordshealth authority or NHS trustfor the uncertain concept of the person lawfully in possession of the body.
Clause 3 covers a similar point. The 1961 Act rightly says that reasonable steps should be taken to ensure that those who carry out the procedure have the consent of surviving relatives. In practice, that gives a surviving relative the legal right to stop the process going ahead. That sounds fine, until one realises, how wide the term "surviving relative" goes. Does it include uncles, aunts and cousins? Does it include relatives who fell out with the deceased some time ago and may have had no contact with him or her for many years? Does it include a relative who may have been antipathetic to the person who has died?
The point has not yet arisen, but it is possible that some unfortunate medical team will find themselves challenged by, say, a long-lost brother who had fallen out with the deceased but who may make his own ethical objection to the procedure being carried out. In theory, that brother could override the wishes of the deceased.
1338 Clause 3 makes a simple change by saying that consent should be sought from a co-habiting spouse or partner, or, in the absence of a spouse or partner, a parent or child of the deceased person. That does not mean that any other close relatives or friends must have their wishes ignored. There is nothing to stop any sensible medical team from listening carefully to the wishes and views of anyone who presents himself or herself. The law should specify the position of the surviving spouse or partner or, in the absence of any spouse or partner, the parent or child.
The one change that I seek to make in the law, although not necessarily in practice, is in clause 2. Otherwise, I regard the Bill as a clarification of the present position. Clause 2 deals with the position when a patient's heart is not beating. I will not go into the full medical details, but in practice nowadays, most donors whose organs are used are people who died when they were being ventilated in an intensive care unit. Relatives are faced with the distressing situation that the patient has been conclusively established to be brain dead, but the body is still breathing and warm in an intensive care unit. In such circumstances, once consent is properly obtained, organs are available that can be transplanted to a patient in need. In practice, due to the problems that I have described, even then only about a third of such cases lead to organ transplantation. That gives rise to the need for the wider review to which I have already referred.
One practice can sometimes be carried out on non-heart-beating patients, when someone suffers a cardiac arrest and dies. Although the heart ceases beating, the organs are perfectly usable. They need to be preserved in a usable condition while steps are taken to find out whether the person was a willing donor and whether the relatives are content for the operation to go ahead. A simple practice can be adopted in accident and emergency departments and elsewhere of inserting a catheter into the kidneys which cools them and preserves them for a sufficient period for them to remain usable. The time is needed to allow sensitive inquiries to be made about whether the dead person was a willing donor and whether the relatives will consent to the operation.
The practice is carried out in a few places in this country and it has been carried out overseas. A successful programme in Leicester near my constituency provides about 25 per cent. of the organs used for kidney transplant. Occasionally, legal doubts have been raised about the practice. Insertion of the catheter is a medical procedure that is not for the benefit of the patient who, alas, is by definition dead and not able to benefit from it. I regard that as a slightly fanciful legal argument. Given the fairly liberal view that the British courts take of these things, it would be unlikely to succeed if it were ever pressed. Yet doctors are deterred by the fact that someone with strange views may take legal action against them. Clause 2 deals with that possibility by allowing the preservation of organs at the appropriate stage to give time for consent to be obtained.
§ Mr. Desmond Swayne (New Forest, West)
Precisely that argument was used by the Department to bring to an end the programme of elective ventilation that was undertaken by Professor Feest. It is not a fantasy of doctors' imaginations that that legal argument might be used against them; it has been used in the past.
It has not been used in cases of catheter insertion, but my hon. Friend is right to say that the 1339 Department often takes an extraordinarily cautious view of the law on these matters. No doubt it would argue that it has to protect itself against a possible scandal in which it allowed procedures to go ahead about which someone chose to complain.
I have explained the purpose of the Bill. I have the support of the British Medical Association ethics committee. Everything that I have said is in line with the BMA's publications. I have discussed the Bill with the General Medical Council, which is extremely supportive. I am not aware of any opposition to my proposals. I have deliberately kept them exceedingly modest, which no doubt explains the lack of opposition to them. If one comes seventh in the private Members' Bill ballot in a Parliament that is not likely to last more than a few weeks longer, to be modest in one's ambitions is the only sensible way to proceed.
I am not sure whether the Government harbour the slightest objection to any of the changes I propose making; a meeting I had with one of the Minister's colleagues leads me to anticipate that they do not, but remain likely to hesitate about the Bill. If I may, I shall anticipate the argument that the Government are likely to advance. They are likely to say that they are reviewing the whole subject, including the 1961 Act, and that it would be premature to go ahead with any changes until the review is completed. That will not be the first time I have heard such a Government response to a modest private Member's Bill, but the argument has never struck me as sensible.
The fact is that when the Government have finished their review, they will produce a Bill for which they will have great difficulty finding parliamentary time. Whichever party is in power, the Leader of the House and the Whips Office will say that the Bill will take up weeks of parliamentary time and upset some hon. Members who have big issues about the subject. Once that Bill enters the parliamentary timetable, it will indeed take time, because Members of Parliament are greatly divided on the issue of presumed consent, for example, which has been raised in connection with previous private Members' Bills.
If the Minister rises to say that, although the Government are terribly sympathetic, they want to wait for the results of the review and for fresh legislation to be introduced in due course, my guess is that the whole process will take years. I will not regard that as a wholly satisfactory reply to a Bill that makes such tiny changes to the 1961 Act. It will certainly not be an adequate reply if no one has thought of any reason to oppose the changes and cannot find an opponent to any of my proposals.
I see that the Minister wishes to intervene. Although I look forward to hearing her speech soon, if she wants to intervene before I resume my seat, I am happy to give way.
§ The Parliamentary Under-Secretary of State for Health (Ms Gisela Stuart)
Before the right hon. and learned Gentleman concludes his speech, I should be grateful—the answer might help me to reply to the debate—if he clarified whether he is fully aware of the distinction between non-heart-beating donations, which, in the Leicester example, provide a broad window of 40 minutes in which kidneys can still be donated, and 1340 elective ventilation, whereby a body is simply ventilated for no purpose other than to use it for transplant operations. We draw a clear distinction between the two and we oppose the latter. It would be helpful if he stated whether he sees the clear distinction between them that we perceive.
Personally, I do not draw that distinction and I am not sure why either procedure should he made wholly illegal. The circumstances in which either procedure is carried out should be carefully governed, but I should prefer that to be done by the ethical code of the profession and the guidance of the Department. If the Department in its wisdom chooses to continue to issue guidance stating that elective ventilation should not be carried out within the health service, so be it. Foremost in my mind was the insertion of catheters in non-heart-beating patients, but I am not sure that, in the right circumstances, I would oppose elective ventilation. Certainly, that point does not provide an adequate reason not to clarify the law on the circumstances in which it is right to preserve organs while consent is being sought.
§ Mr. Peter Bottomley
The Minister's question is helpful. Perhaps the Department's view is based on an interpretation of the law. I do not think that it should necessarily be a burden on the Department to decide on the ethics of the situation; that matter is better left to the medical profession in association with public opinion. My right hon. and learned Friend's response should allow the Department to accept the Bill and thereby allow the responsibility to pass to the GMC and doctors in general.
I am grateful for that intervention. If a practice is excluded by law, I am not certain that that was intended by Parliament in 1961. When the 1961 legislation was being debated, medical science was less advanced and I suspect that it is mere accident that doubt now hangs over procedures that have been developed since that time which enable organs to be preserved in the way that is now possible.
That is the full scope of my Bill. I am astounded by the modesty of my ambitions. The Bill deals with only a small part of the subject, but I do not apologise for that. The subject is an extremely large one to which I hope the House will again turn its attention in the not-too-distant future and as frequently as possible thereafter. Needless deaths are occurring. The entire medical profession wants to do more and the public are highly supportive, so I hope that the House will take a small step in the right direction by giving my Bill a Second Reading today.
§ 1.5 pm
§ Mr. John Heppell (Nottingham, East)
I had not intended to speak, but I introduced the Human Organ Transplants (Amendment) Bill of 1993, which related to presumed consent. I fully appreciate why the right hon. and learned Member for Rushcliffe (Mr. Clarke) has introduced his Bill. We are faced with a growing problem. Donor numbers are gradually decreasing while waiting lists grow longer. No sensible Government can sit back and wring their hands in these circumstances. We must consider practical measures to try to improve the situation, and the Bill is an attempt to do just that.
I have one or two reservations, which I probably would not have had when I introduced my Bill. First, we make assumptions about the number of people who are willing 1341 to be donors, and I am not sure whether they are always correct. If my memory serves me correctly, the results of a survey in July 1999 seemed to show that more than 50 per cent. of the population were in favour of keeping the present system. If the results of a public opinion poll suggest that it is right not to change the system, that does not necessarily mean that that is the right approach. However, we must take into account the views of the general public.
Something even more significant has happened since the 1999 poll was conducted—I refer to the events at Alder Hey. I know that those events are not related to the Bill. Research undertaken by the national health service shows that the Alder Hey scandal has not significantly altered the amount of organ donation that is taking place.
I am happy to donate all my organs, if any of them are of use to anybody by the time I go. I am willing for my organs to be used for medical research or scientific research once I have gone. I take the view—I am sure that it is shared by many Christians and people of other religions—that the body is merely a container and that, when I am dead, it does not matter what happens to my organs. So long as those concerned make sure that I am dead, it does not really matter what happens to my body afterwards.
The Alder Hey events, among other things, have made me realise that other people do not take, my view, and that their views should be respected. I understand that NHS research shows that one in four families has a principled objection to transplants.
§ Mr. Eric Forth (Bromley and Chislehurst)
Does the hon. Gentleman accept a reversal of the presumption? The Bill does not seek to do it, but I am following his argument. Would a reversal of the presumption of donation fulfil his requirements? If people who had an objection to donation carried a card saying, "Please do not use any of my organs", would that meet the problem that he is outlining?
§ Mr. Heppell
Not quite. I promise that I shall come on to that.
There are levels of revulsion about what is happening. I would have no problem with my body being used, but I have tried to put myself in the position of others. For example, if I knew that the organs of one of my children were being used for research, would I take the same view? I think that I would, but I think also that I would be the exception that proves the rule. I believe that most people would have some sort of revulsion about that. In some instances we are talking about natural, revulsion.
I shall not dwell on the tragedy of the Marchioness because my right hon. Friend the Secretary of State has to deal with the matter. It was discovered that the hands of those who had died had been removed so that fingerprints could be taken to identify the bodies. I think that people have a natural revulsion to that, but I would not have it. I have learned that I need to be much more sensitive to the arguments about transplants than I have been in the past. I took the view that the presumption should be that people are willing to be donors. Even though there is a presumption that people are willing to donate, I would still like relatives to be consulted.
1342 That is not just because of the extra sensitivities, but because of the practicalities of organ donation. I am worried about the right hon. and learned Member for Rushcliffe narrowing the definition of who can object to organ donation to someone's spouse, daughter, son or parents. In countries such as France, where organ donation went ahead despite the fact that people objected to it, that reduced organ donation. There was a groundswell of opinion. If someone objects and is not listened to, that can work against the number of donations. It is not just about being sensitive to people's wishes; it is also about the pure practicality of what increases the number of donors.
I am torn on whether to support the right hon. and learned Gentleman. I, too, am impressed by his modesty; indeed, I am impressed by his modesty about his modesty. The Minister will have to reassure me that the Government's plans on organ donation will improve the situation if I am to be persuaded not to support the right hon. and learned Gentleman.
§ Mr. Eric Forth (Bromley and Chislehurst)
I want to say briefly how strongly I support the Bill of my right hon. and learned Friend the Member for Rushcliffe (Mr. Clarke). I have only a couple of reservations. First, I should declare a kind of interest as, for most of my life, I have had only one kidney, so, possibly, I may stand to benefit more than most others from his proposals—although, fortunately, I have not yet had to.
Were I ever to come high in the ballot for private Members' Bills, this is exactly the sort of issue that I should seek to promote. I would probably make the mistake of going much further than my right hon. and learned Friend and, in my enthusiasm, jeopardise the chance of my Bill succeeding. I am sure that he is right to restrict the scope of his Bill to trying to ensure that, in a small but important way, any obstacles to organ donation are removed. That is one of the most important things that we can do, and is ideal territory for a private Member's Bill.
My right hon. and learned Friend has deliberately tried to ensure that his Bill is not controversial; even so, the hon. Member for Nottingham, East (Mr. Heppell) challenged it. In the context of its subject area, it must be seen as extremely modest. I am sure that it is right at this stage to seek to minimise any possible objections but, at the same time, to promote the cause of the availability of organs for transport.
It has always struck me as a great tragedy that, although we now have the capability, techniques and technology to save and improve the quality of lives in many different ways, that process is unnecessarily inhibited by a combination of our laws, people's attitudes and, as the hon. Member for Nottingham, East eloquently said, people's frequent reaction to the subject. The difficulty is that, very often, those who, under the existing provisions, can prevent the use of an organ for transplant do so at a time when their emotions are heightened. The odds are that they will react against the possibility, rather than have a more favourable disposition.
§ Mr. Heppell
The right hon. and learned Gentleman has just reminded me of something that I meant to say. By all means, one should register for organ donation and 1343 carry a card. However, the crucial point is that one should discuss the matter with one's close relatives so that they understand one's wishes, should one die. I have made sure that my close relatives know what my wishes are; indeed, I know the wishes of my close relatives. If, heaven forbid, there was a tragic accident, I would know what they would like me to do. That cannot be drummed into people enough; they must have those discussions now.
§ Mr. Forth
I am sure that that is right. Research has shown that relatives who refused permission at the time, when asked some time later, say that, given their attitude in less stressful circumstances, they probably would have, and rather wish that they had, given permission. That factor must be borne in mind.
I shall not say more, as I do not want to jeopardise the progress of my right hon. and learned Friend's Bill. I wanted to record my enthusiastic support for it. Given the circumstances, the Bill is pitched at exactly the right level, which is no more than I would expect from him. I hope very much to see it make progress today.
§ Mr. Kelvin Hopkins (Luton, North)
I congratulate the right hon. and learned Member for Rushcliffe (Mr. Clarke) on introducing the Bill. Unusually, I find myself in total agreement with the right hon. Member for Bromley and Chislehurst (Mr. Forth). I enthusiastically support the Bill and hope that, even though there may be a general election in the offing and the Bill may not make much more progress, the Government or another private Member's Bill immediately after the election will bring the proposal into law soon. It will save some people's lives.
I speak somewhat emotionally. A good friend of mine waited four years for a heart transplant that never happened, and he died waiting. Many other people in this country die because the rules governing consent are too restrictive and make it difficult for consent to be obtained, so that organs cannot be secured for transplant.
I strongly support this sensible measure. I would like it to go further, but the right hon. and learned Member for Rushcliffe is right to draw it fairly tightly, so that it stands a chance of progress in anticipation of the wider review being undertaken by the Government. I hope that the Government will not follow the suggestion of the right hon. and learned Gentleman and take the Bill in with the review, but will allow this measure to come into law soon.
I carry my donor card everywhere and try to persuade everyone else to do so. Many people have no objection to carrying a donor card; they just never get around to it because their lives are too busy. It is like filling in a tax form: we would not do it unless we were compelled to do so. Door-to-door canvassing might even persuade more people to sign up to donor cards. Even so, when someone dies, it is a difficult time to get the relatives' consent, and as a result others die or do not get their transplants because consent cannot be achieved.
I know that other hon. Members want to speak on other matters, but I wanted to express my strong support for the right hon. and learned Gentleman's Bill, which I hope will soon become law.
§ Mr. Desmond Swayne (New Forest, West)
I support my right hon. and learned Friend the Member for Rushcliffe (Mr. Clarke) and his Bill. The question of the lawful possession of the body is vital, and if anyone doubted that, my hon. Friend the Member for Worthing, West (Mr. Bottomley) made it clear in his timely intervention.
As my right hon and learned Friend the Member for Rushcliffe pointed out, the background to our debate on the Bill is that the number of transplant operations being carried out presents a rather flat profile. Nevertheless, the list of those awaiting the procedure is growing and, as my right hon. and learned Friend pointed out, that is an understated list. At the same time, a number of high-profile appeals, have been covered by the national newspapers recently", as the relatives go public in their search for an organ for a loved one, and the public wait for days afterwards to see whether an organ is forthcoming. In one, recent case, it was, and in another case, tragically, it was not.
The sadness, anger and frustration that that can occasion is a result of the fact that, at a time of rising demand for organs, so many useful organs are being buried in our churchyards or cremated in crematoriums. It is not a question only of high-profile cases. Thousands of people are dying. The hon. Member for Luton, North (Mr. Hopkins) referred to his personal knowledge of that silent tragedy, which demands urgent action and a proper agenda.
We are indebted to the British Medical Association for its manifesto, which sets out demands of election candidates and political parties. All hon. Members have received copies of the document, which states:The BMA calls on the political parties to support a radical review of organ donation procedures to ensure that we have the most effective way of regulating and organising organ donation in this country.My right hon. and I learned Friend the Member for Rushcliffe has not waited for a review, and I congratulate him on taking effective action now. I assure him of Front-Bench support, but I shall not attempt to reiterate his arguments. He stated them effectively and, in the light of the strength with which he made his case, it would be impertinent of me to repeat them. However, I remind hon. Members that he pointed out that the agenda is wider than that which the Bill addresses. The Bill is narrow in scope, but wider issues must also be dealt with.
I have spoken of the anger, sadness and frustration that many people feel about organ donation. Their feelings arise from an impression of inactivity. I recently attended two all-party group meetings in which people made their cases about the legal and practical changes required to ensure a greater number of transplants. They stressed the urgent need for action, but when they turned to the parliamentarians at the meetings, we merely sat and looked at them. I suspect that their impression of inactivity is justified.
Hon. Members may recall a Westminster Hall debate on organ transplantation that was held on 14 December 1999. The discussion was a high-profile one for Westminster Hall, as it occurred immediately after the initial aftermath of the launch of the Alder Hey inquiry. It was attended by the Front-Bench spokesmen of the two Opposition parties—my hon. Friend the Member for 1345 Woodspring (Dr. Fox) and the hon. Member for North Devon (Mr. Harvey), who spoke for the Liberal Democrats. The debate covered a number of issues that have been mentioned today. The first item on the agenda was uncertainty in the law with regard to possession of the body and preservation of organs. I am glad that my right hon. and learned Friend the Member for Rushcliffe has now taken action and that a measure has been proposed to address those issues.
Other important issues were raised in that debate, not least among which were novel ideas about raising the profile of donor cards and of registration on the national register of donors. It was suggested that annual electoral registration forms should contain boxes that people can tick to add their names to the register if donors. I am glad that my local authority, New Forest district council, has adopted that suggestion, and I hope that more authorities take the same action. My hon. Friend the Member for Woodspring called for a month of activity in which anyone who spoke to any health professional would be presented with the form needed to obtain an organ donor card. That useful suggestion could have been adopted.
The debate dealt also with the number of intensive care beds, and questions were asked about what could be done about that issue. There was also discussion of revisiting elective ventilation. Presumed consent was once again reviewed, and we spoke about possible improvements in the national register of donors and co-ordination of the business of transplants. That legitimately leads to questions about the purpose of those Adjournment debates. As my hon. Friend the Member for Woodspring said in that debate, we hold debates in Westminster Hall because we want to discuss what should be done and we legitimately expect consequent action.
More than a year later, we can legitimately ask what has happened in the meantime. What has arisen from the agenda that was brought to Ministers' attention in Westminster Hall? On 11 February 2000, the hon. Member for Broxtowe (Dr. Palmer) presented a ten-minute Bill. Hon. Members voted by 113 to 23 to allow him to introduce a Bill on presumed consent. In June, the British Medical Association published a useful document entitled "Organ Donation in the 21st Century", to which my right hon. and learned Friend the Member for Rushcliffe has already referred. One of the first items with which it deals is lawful possession of the body. My right hon. and learned Friend has addressed that matter.
What else has been done? Following the Alder Hey report, a summit comprising those involved in transplants was held on 27 February, in a climate of fear that a reduction in transplants would ensue. Mercifully, all the signs suggest that that will not be the consequence of the Alder Hey report. However, we now expect action. The national press reported that the summit issued several new targets for 2005 and 2010. They include doubling the number of those on the register of organ donors from 8 million now to 16 million by 2010; establishing a national service framework for those suffering from renal failure; doubling the number of kidney transplants by 2005, and increasing lung and heart transplants by 10 per cent. by 2005.
However, I am reminded of the words of Florence Nightingale—
§ Mr. Swayne
Indeed. Florence Nightingale pointed out that reports do not implement themselves. Action must arise from the summit. I ask the Minister to assure us that the national consultative body that will be set up as a result of the summit will have an agenda. I shall suggest some items for it.
The first item is how to increase the number of people who make their organs available for transplant. One method is to use the electoral registration process, which some local authorities are already doing successfully.
The consultative group will have to consider presumed consent. I am not an advocate of presumed consent, and many of my hon. Friends have grave reservations about it. I have a philosophical reservation, just as I had a reservation about the motion that we considered on Monday, when we "deemed" something to have occurred in a Standing Committee that clearly had not happened. I have reservations about presuming that something has been done, when it clearly has not.
My hon. Friend the Member for Woodspring pointed out that presumed consent may make matters worse. Let us imagine the case of a close relative who might legitimately have expected to be asked whether the donor would have had any objections. If the relative was not asked, and an issue was subsequently made of it, we can imagine the tabloid treatment of the case and the damage that it might cause the organ donation programme. There are, therefore, dangers in the process. However, the proposals about presumed consent with safeguards that the BMA has put forward in its document deserve close examination. Those proposals do not differ much from existing practice, and a debate on that issue is worth having because it would raise the profile of the issue and perhaps generate a great many more organ donors.
I would also like the consultative group to review the work on elective ventilation. I make no secret of the fact that I am an enthusiast for elective ventilation. The programme was highly successful: Professor Feest's work doubled the availability of organs available for transplant during the time that he carried out elective ventilation. There are difficulties associated with the practice, and they are covered in the BMA's work. However, the programme was effective, and it was stopped because of the doubts about its legal position, to which my right hon. and learned Friend has drawn attention. That doubt could be clarified by a change in the law, and if that does not happen, we may be passing over a very effective way of increasing the number of organs available for donation. I would certainly ask the consultative group to review that work.
I would also like the consultative group to review the co-ordination and organisation of the transplant infrastructure. Many health professionals believe that the Department of Health's review of the United Kingdom Transplant Support Service Authority that took place in 1998 and 1999 was a missed opportunity. The Royal College of Surgeons has subsequently called for a national transplant service. We should like that case to be reviewed again.
In supporting this narrow but very important Bill, I also call for urgent action on the other fronts that I have mentioned. I remind the House that we have been waiting some time. At least in one respect we shall have to wait no longer, as a consequence of my right hon. and learned Friend's important Bill, which I commend to the House.
§ Mr. Barry Gardiner (Brent, North)
I recall—indeed, I shall never forget—the occasion on which I went to record the death of the woman who had taken care of me for 20-odd years of my life. There was a question about my relationship to the deceased on the form that I had to fill in. In answering that question, I said that she had been my nanny. The registrar said, "I am terribly sorry. That is not a subsisting relationship. You will have to be the person who causes the body to be disposed of." I shall never forget that. All hon. Members, and all those who draw up official forms, would do well to remember that, in circumstances such as these, when we try to set up a procedure and put in place a form on which it is necessary to capture a relationship, it must be done with great sensitivity.
I do not believe that any hon. Member would say that the aims of the Bill introduced by the right hon. and learned Member for Rushcliffe (Mr. Clarke) are not sound and good. The Bill aims to ensure that more organs are made available for donation and, therefore, that more lives will be saved. That is entirely commendable.
If I may be so audacious as to say so, I think that the right hon. and learned Gentleman has shown his great experience in the House by producing such a brief and short Bill, which has as few traps as possible. The older and the wiser the head, the more one is capable of putting a case with extreme brevity, and the Bill certainly has done that.
Doctors, health care trusts and medical professionals have a grave responsibility towards the relatives of patients who have been in their care and people, like me, who are not relatives. On occasions, most notably at Alder Hey recently, they have shown contempt and a complete disregard for the nature of those relationships. Clearly, medical professionals had forgotten that the patient was a person or a child, and not a specimen, a cadaver or a series of organs that had to be disconnected and taken elsewhere.
My reservation about the Bill, I put it no stronger than that, is that it would reduce the need to consult the people who are extremely close to the patient—they may not be blood relationships or marital relationships—and it would enable hospitals and medical professionals not actively to strive to get the consent of those people who are most concerned and closest to the deceased.
I do not want to detain the House, as it has other business to deal with; I simply want to express that reservation in the wider hope that the filling in of forms generally—not merely for organ transplants—may be made more human.
§ The Parliamentary Under-Secretary of State for Health (Ms Gisela Stuart)
I am grateful to the right hon. and learned Member for Rushcliffe (Mr. Clarke) for putting these proposals before us today. He has explained that his intention is to clarify some aspects of the Human Tissue Act 1961, which he believes placed difficulties in the way of people who wanted to retrieve organs for transplantation. I congratulate him on drawing up a private Member's Bill which, unusually, even gained the support of the right hon. Member for Bromley and Chislehurst (Mr. Forth). That is rare. I was in the strange 1348 position of being in the House the second time that he has supported such a Bill. That is a recognition of the fact that it was narrowly drawn.
I should like to put the Bill in the context of the action that the Government are taking. The hon. Member for New Forest, West (Mr. Swayne) was rightly looking for action, and he again reminded us of Florence Nightingale—I hope that that was the last time, but perhaps I shall hear the same quote again in a few weeks.
The starting point must be the uniqueness of donation and transplantation, because a donation depends on the altruism of others. Repeated public surveys show that most people would be willing to donate organs. The number of available organs has decreased over the past 10 years, partly because of positive developments such as the reduction in the number of road traffic accidents and our increased ability to help people who suffer strokes in their 40s and 50s. All that has been very good. We need to improve people's understanding of the processes involved in asking about donation and what will be expected and accepted. People are facing bereavement; it is a stressful time. We need to educate the public so that Government campaigns or those supported by local organisations or national interest groups urge people to think about the issue before the event occurs. There is currently a great surge of interest and we expect to be able to double the number of names on the organ donor register before the end of the decade.
My hon. Friend the Member for Nottingham, East (Mr. Heppell) made it clear that we have to take the public's views into account, as this is not entirely a rational argument. We now have a dedicated telephone line for registering organ donations and information is available on website.
We must make sure that no potential donation is lost because, for whatever reason, a family is not asked. There are pockets of resistance or squeamishness about donation within the health service that we need to overcome. We are putting in place a programme of training and support for those NHS staff who deal with bereaved parents. We shall also be making clear the importance of active support for donation throughout each trust and health authority, and that includes the wholehearted endorsement of management. This is known as the whole hospital approach. One of the first steps is a public commitment to donation by the whole organisation.
That has been taken up in my area of the west midlands, where all trust chief executives have agreed to implement a hospitalwide policy on organ donation. This means that hospitals in the west midlands have agreed to inform staff of the trust's policy and view of donation; to support staff when approaching relatives for donation; but also to challenge staff who are reluctant to approach the families concerned and to support transplant co-ordinators in their aim to promote a general hospitalwide consciousness regarding all issues in relation to organ and tissue donation. That is within the NHS.
On 27 February, the Government held an organ and tissue donation summit to consider all possible ways to increase organ and tissue donation, and to call on a wide range of organisations in the private and public sectors to help support donation. Examples include the national ITV companies running the "Year of the Promise". HTV and Meridian both adopted the NHS organ donor register as one of their "Promises". The Sun newspaper has twice run 1349 a major campaign promoting organ donation to its readers and encouraging them to join the NHS organ donor register.
There has also been less spectacular but consistent support from Sky, Littlewoods, the AA, the National Express Bus Company and Connex. In August, Boots, the high street chemist, started promoting organ donation via its in-store loyalty card, the Boots advantage card. Boots customers can now join the NHS organ donor register when applying for or renewing their advantage card. Similarly, the Goldfish credit card has offered its 1 million customers the opportunity, when applying for or renewing their credit card, simply to tick a box to join the NHS organ donor register. We have to admit that it is more likely that people will carry their credit cards than their organ donor cards, even if they have them. We have recognised the importance of increasing the number of people on the organ donor register, but we are also ensuring that the register is used. I hope that that satisfies hon. Members that the Government are proactive.
In many areas, there has been a debate on the draft consultation document. What are the Government doing as a result of that? We have made it clear that UK Transplant must lead the campaign to promote organ procurement throughout the NHS. We need to strengthen the transplant co-ordinators service. It has an important role, identifying likely donors, ensuring that consent is sought by the NHS trust and that, when organs are available, they go to the right people.
The Government are also committed to investing in innovative forms of organ donation, encouraging the development of non-heart-beating donation programmes and encouraging live donations. We have also promised to consider in the review of the Human Tissue Act 1961 how we might modernise the law on the process of gaining consent for organ and tissue donation.
§ Mr. Swayne
A point was put to me by Professor Engeset in Aberdeen. His contention is that we are missing a number of potential donors, whom we would have had in the past, because of the development of technology. He stated—it was subsequently confirmed to me by other members of the British Medical Association—that an accident or stroke victim might be scanned at a regional centre and the result of that scan sent down the telephone wire to the consultant at the other end, who might take one look and say, "There is no hope for that patient," so that patient would never make it to the ventilator, as he would have in the past. Hence, we will have lost a potential donor, whom we would otherwise have had. That matter needs to be looked at.
§ Ms Stuart
If I understand the hon. Gentleman correctly, he is suggesting that we move away from a policy where an assessment is made of whether the patient will survive, a medical intervention is then made to save his life and, if that is unsuccessful, organ donation comes into play. He is suggesting that we should take action to prolong what appears to be life in the interests of securing an organ donation. France went down that road for a brief period and it was successfully challenged in the courts. For about four years, the number of donations dropped. It took France a long time to get the number back up. The public must have confidence that, within the NHS, everything is done to save a patient's life. If that is not possible, we make it possible for organs to be donated, 1350 but not before that. That would be a very dangerous step and I would be very wary of going down that road. I do not think that it is suggested in the Bill.
§ Mr. Swayne
The hon. Lady is right; it has nothing to do with what is proposed in this narrow Bill. However, she will know of my enthusiasm for elective ventilation. The procedure was successfully carried out in this country and withdrawn as a result of legal doubts, but those doubts can be addressed by a change in the law. It is a review of that—
§ Madam Deputy Speaker (Mrs. Sylvia Heal)
Order. The hon. Gentleman must confine his remarks to what is in the Bill.
§ Ms Stuart
I will return to that point in the context of the Bill.
We know from looking at what is effective abroad that altering the legislative framework will not solve the shortage of organs. That is important. It is not the legislative framework that is preventing us from having more organ donors. The real question is whether a change to presumed consent, which some hon. Members suggested, would change things. There is no evidence in other areas of the world that such a change has been successful.
Currently, we operate a system where specific consent, or at least a lack of objection by relatives, must be established prior to donation. It is an opt-in system. Opportunities are offered via donor cards and the organ donor register for those who would be willing to be donors to opt in and to record their wishes. Regardless of whether that has been done, those close to the deceased will be consulted. When the deceased's wishes are known, families will nearly always agree to allow donation to go ahead.
The opt-in system is widely supported. In a survey conducted in July 1999, 68 per cent. said that they would be willing to donate under the current system. Now an opt-out system is being advocated, whereby consent is presumed unless the deceased has recorded an objection. Spain has been cited as the country with the highest donation rate in Europe. It is true that it has an opt-out law, but it has never been used and consent is still sought there. In France, where the opt-out system was tried, there was a huge public backlash. The right way forward is to continue to seek informed consent from those closest to the deceased.
The expert committee's report was clear. It said:It is strongly advisable to ascertain the public's and health professionals' opinion about presumed or informed consent for organ donation before promoting legal changes that might be potentially detrimental.Currently, most health professionals with experience in the donation and transplantation process, most notably the transplant co-ordinators, do not support a change to opt-out.
More importantly, the debate is now considered less relevant by most transplant organisations, because relatives or friends are asked as part of the screening process about the donor's recent medical history. If they object to donation, organs will not be retrieved, whatever the legal framework. Permission for donation for transplantation is always sought explicitly from those 1351 close to the potential donor. They are asked to agree that the organs may be used for medical or scientific research if they prove unsuitable for transplantation.
Organs taken for transplantation cannot be used for research without specific permission from the donor's family. Transplant co-ordinators who seek consent consider that keeping the family informed throughout and giving them feedback on the use of organs is fundamental to the process. We will seek to ensure that current good practice on gaining consent for donation for transplantation is applied to all aspects of organ and tissue donation and retention for other purposes, such as diagnosis research and medical education.
The Bill offers some apparently minor changes to the Human Tissue Act 1961 intended to clarify it and improve the supply of organs for transplantation. Of course, we all endorse that objective, but the 1961 Act provides the basis not only for organ transplantation but for hospital post mortems and the removal, retention and use of organs and tissue at post mortem for medical education and research purposes.
The interim report of the Bristol inquiry and the Alder Hey inquiry report have both demonstrated difficulties with the 1961 Act, which has been described as arcane and complex. It has also been suggested that practitioners working in the field have little knowledge or understanding of its provisions. The chief medical officer's advice to the Government recommended short-term changes to the Act to clarify that parental consent is needed, rather than lack of objection, for the removal, retention and use of human organs and tissue taken from a deceased child. It also recommended that, as part of an urgent reform of the law, an offence should be introduced for not complying with such provisions. We have accepted that recommendation. As my right hon. Friend the Secretary of State said in his statement on 30 January, we intend to introduce legislation to give effect to the recommendation as soon as the parliamentary timetable allows.
The chief medical officer also recommended a more wide-ranging revision of the law on the taking, storage and use of tissue from the living and the dead for therapeutic purposes, for research and for education. The work to underpin that will be undertaken in the next six to 12 months in consultation with a wide range of stakeholders. In both proposed reviews of the law, the intention is to address the main deficiencies of the Human Tissue Act 1961, to restore public confidence in the operation of that law and to ensure that organs and tissue are available for both transplantation and vital medical research, while ensuring that the wishes and feelings of families are respected. The specific changes before us today need to be considered as part of the major revision of the law that is needed to bring it into the 21st century.
Clause 3 proposes the inclusion of cohabiting partners and we agree with the intention behind the Bill's proposals to extend the categories of those who should be consulted about donation to the cohabiting partners of the deceased. I was extremely moved by the contribution of the hon. Member for Brent, North (Mr. Gardiner), who vividly illustrated that attempting to define relationships on forms is very difficult and can sometimes be extremely insensitive to people in distress. Currently, there is no provision for cohabiting partners to be consulted and this 1352 seems inappropriate when so many people are not married to their long-term partners. Surely those partners should be considered to be the equivalent of a spouse or close relative in this case. However, it is not a simple matter to alter—for example, there are questions of conflicts between partner and legal spouse or partner and parent. We plan to consider the categories of those to be consulted as part of the wider ranging consultation on the Human Tissue Act.
Clause 1 refers to those in lawful possession of the body. The right hon and learned Member for Rushcliffe proposes an immediate change to the definition of the person lawfully in possession of the body. In practice, the health authority or NHS trust is assumed to be in possession of the body, and its staff authorise the donation. However, the chief medical officer's report did not identify this phrase as causing any difficulty, and certainly it has not been presented as an issue that requires urgent action.
The proposal about the preservation of parts of the body is intended to facilitate the practice of non-heart-beating donation. I have a sense that hon. Members are not drawing a clear distinction between non-heart-beating donations and ventilation for the purpose of keeping a body alive. A debate on that would have to be wide-ranging and, as the right hon. and learned Gentleman said, it would not divide down party lines as it touches on deep issues.
It is important to put on record that most organs for transplantation are taken from those who die while on life support—hence with still beating hearts—in an intensive care unit. It is important to understand that very few people die in such circumstances, and only a proportion of those, for medical reasons, will be suitable to be become donors. However, it is sometimes possible to accept kidneys from those whose hearts have stopped beating. There is a brief window of opportunity—during the first 40 minutes after the heart stops—when the kidneys can be retrieved and used for transplant. This so called non-heart-beating donation can go ahead if the organs are preserved by being cooled in the body once death is pronounced. The preservation process will continue until the family gives agreement and the organs are retrieved. It will cease when the time limit is reached and attempts to reach the family have failed or when the family decides that it does not want the donation to go ahead.
As part of the Government's plan to increase the availability of kidneys for transplantation, we have recently undertaken to support increased use of non-heart-beating donors. We are not ignoring that proposal, but looking to develop it in a more sensitive way. Three transplant units have successfully run non-heart-beating donation programmes for some years. The right hon. and learned Gentleman mentioned the one in his part of the world. They have all done so after full and lengthy public consultation which made the process transparent and tested out its acceptability.
The British Transplant Society is currently drafting a protocol on non-heart-beating donation to present to the Department of Health for wide consultation. This is a sensitive and complex subject which will require negotiation with the coroners services, which is of course the responsibility of the Home Office, and careful 1353 consideration of how to maintain public confidence. It is not an area in which hasty action is likely to lead to progress; nor would legislation necessarily be helpful.
Anxieties were expressed in the media immediately after the Alder Hey report that publicity surrounding organ and tissue retention post mortem, without the express consent of patients and parents, would have a negative effect on our organ transplant programmes. The latest figures for UK transplants do not support that contention. The number of donors in February was exactly the same as in February 2000. There was, in addition, an encouraging difference over the period in that there was a huge increase in the number of people joining the organ donor register. Some 80,000 joined it in February.
There is no evidence of any negative impact from Alder Hey on organ donation for transplantation or on tissue donation for medical research. However, even if there is no additional crisis, there remains a chronic shortage of organs. Keeping public confidence in the donation system is vital to the transplantation service.
Improving donation is about changing attitudes and behaviour. I do not believe that that will best be done by legislation. However, I welcome the opportunity offered by today's debate to discuss an important issue and to inform the House of what is in train to improve organ donation. On balance, given what I have said, the Government are not minded to agree to the Bill.
§ 2.3 pm
§ Mr. Kenneth Clarke
I am grateful to the Minister, to my hon. Friend the Member for New Forest, West (Mr. Swayne) and to others for what they have said. There is obviously no difference of purpose or intention in the House. We all realise that something must be done to meet the gap between the need for organ transplants and the present supply. I am reassured to hear that the Government are addressing the problem with some urgency. I share the view of my hon. Friend the Member for New Forest, West that we need in the near future—whichever party is in power 12 months from now—to see some progress. Everyone has identified a long list of problems, and we must tackle them.
My only difference with the very helpful Minister lay in her conclusion. I should have liked the Bill to go to 1354 Committee. I accept that it might be subsumed by the wide-ranging review that the Government are undertaking, but I cannot see that any of the changes that I propose could do any harm or be undesirable. In some areas, the Minister concedes that my proposals would improve matters, such as on the question of co-habiting partners. Nothing that I have proposed would conflict, as far as I can see, with her intention to explore such areas in the review on the preservation of organs. Simply making it lawful to preserve organs would not get in the way of further constructive discussion.
I shall press for a Second Reading, therefore, although I appreciate that the chances of an adequate number of Members being present in the House of Commons at this time on a Friday are slight. Having got so close, I prefer to put the matter to the chance, to see whether anything has held an unaccustomed number of our colleagues here. I shall not press a Division in a spirit of total dissatisfaction with or hostility to what the Minister has said, but there is a slight difference of opinion about how we can best proceed.
§ Question put, That the Bill be now read a Second time:—
§ The House divided: Ayes 12, Noes 0.
|Division No. 157]||[2.3 pm|
|Atkinson, Peter (Hexham)||Soley, Clive|
|Forth, Rt Hon Eric||Spicer, Sir Michael|
|Golding, Mrs Llin||Swayne, Desmond|
|Ladyman, Dr Stephen||Wilkinson, John|
|McIntosh, Miss Anne|
|Mackinlay, Andrew||Tellers for the Ayes:|
|Öpik, Lembit||Mr. Kelvin Hopkins and|
|Skinner, Dennis||Mr. Kenneth Clarke.|
|Tellers for the Noes:|
|Mr. Barry Gardiner and|
|Mr. John Heppell.|
§ It appearing on the report of the Division that 40 Members were not present, MADAM DEPUTY SPEAKER declared that the Question was not decided, and the business under consideration stood over until the next sitting of the House.