§ 11.4 a.m.
§ Mr. Tam Dalyell (West Lothian)
I beg to move,That this House recognises the need to amend the Human Tissue Act to allow a "contracting out" scheme, whereby medical authorities may remove for transplant, once clinical death has been established by two doctors, the organs of any person, other than those who have registered in their lifetime that they do not want kidneys and other organs removed.I suppose that it is true that many of the causes which Members of Parliament take up begin with individual cases in our constituencies. For me, this story started a little more than 15 years ago when Grant Allan, the young son of constituents of mine in Linlithgow, for want of matching tissue, for want of a kidney, after a long and harrowing period of months finally passed on to another life.
These cases can perhaps be echoed by every other hon. Member attending this debate. I see on my own side of the House my hon. Friend the Member for Liverpool, West Derby (Mr. Ogden), my hon. Friend the Member for Brent, South (Mr. Pavitt) and my hon. Friend the Member for Wood Green (Mrs. Butler), all of whom have taken a long and deep interest in this subject. On the Opposition Benches, I see the hon. Member for Ealing Acton (Sir G. Young), the hon. Member for Exeter (Mr. Hannam) and others. Perhaps we all have in common the experience of vary sad consituency cases of young or middle-aged people—not old people, who might expect to die anyway—who, for want of a part of the body which can be transplanted—and the knowledge has been known for 20 years—forgo life and, apart from that, do not contribute in the way that they might to society.
832 All of us know of cases such as that of the 40-year old man with four young children who, because he has kidney troubles and is on dialysis, can play football with his youngsters only for 10 minutes and then has to rest. All of us can cite cases of this kind which are known to us. Furthermore, anyone who has seen those whom they have known in health then undergoing dialysis treatment will know very well what an agony it is. This is no kind of life.
Let us say, therefore, that all of us here are on common ground when it comes to the tragedy and the nature of the problem. There can be no dispute about that. The only issue is what to do about it.
I take this opportunity of thanking my right hon. Friend the Secretary of State for being here this morning. I thank him not only in his position as Secretary of State but also because he, like me, has had a long and continuing personal interest in this problem. Perhaps for both of us it came to a head when I worked as PPS to the late Dick Crossman and my right hon. Friend was Minister of State, Department of Health and Social Security. He will remember the pressure which led to the appointment of the late Sir Hector MacLennan and his distinguished committee to report on the whole problem.
I think it is fair to say that in one sense it was a disappointing report, because it was ambiguous. Yet it would be unfair to blame anyone who served on that Committee, because the sheer ambiguity and indecision reflected the feeling of society at that time. I say straight away to my right hon. Friend that I do not underestimate the difficulties which his Department faces. I have taken delegations to various Ministers in Governments of both parties. He would be a fool or an ignorant Member of Parliament who suggested that there were not very grave problems.
I hope that my right hon. Friend will acquit me, in arguing my case, of putting forward a panacea. It is not possible to wave a magic wand and say that the 1,500 people who are urgently in need of kidneys can get them overnight if my ideas are adopted. On the other hand, at the time that the MacLennan Committee reported some of us strongly hoped that it could come out, as some of its members wished, in favour of a contracting-out scheme. The case that I am 833 arguing today is indeed a contracting-out case. I do not think that it is right to blame the MacLennan Committee because it may be that there had to be a period for thorough experiment with contracting in and volunteering.
That brings me to the crux of the argument and the reason why, having come top of the Ballot for the first time in 16 years, I chose this subject. With the best will in the world, I doubt whether the kidney donor card scheme will yield the number or organs that are needed. I am not saying that the kidney donor card scheme is unnecessary. I am not saying that it is a waste of money. I am not saying that it is a waste of time. It may be that the card scheme has a considerable educative and propaganda value. I see that my hon. Friend the Member for West Derby, who has taken a particular interest in this subject, assents to that. All that I say is that we need not think that producing 8 million to 10 million kidney donor card forms will increase the amount of available tissue.
That is for an obvious reason which operates now, which operated in the past and which will operate in the future. None of us, especially if we are young and see our lives before us—and, of course, it is the organs of young or early middle-aged people that are needed—thinks that an accident will happen to us. Most of us believe that accidents happen to other people, or, if they do happen to us, we take the view that they will not happen today or tonight or when we are on the plane to Glasgow. As a result, we do not carry our kindney donor cards with us.
At some time there must be a statement on the question of the legality of the kidney donor cards. There is a certain amount of misunderstanding about it, as my hon. Friend the Member for Wood Green knows.
I come back to the issue that if we rely on the kidney donor card scheme, whatever its other merits, there will never be sufficient organs to fill the gap. The Secretary of State might refer to the latest figure for 6th December. I gather that it is over 1,600. If one includes dialysis, the figure is 7,000 or 8,000. Although it is one of the less important aspects, let us face the fact that the cost of dia- 834 lysis is rising steeply. It may be £3,000, £4,000 or £5,000. We have to achieve a balance on whether the limited resources should go to dialysis or to some other part of the Health Service.
I come to the question of what we should do. As the Secretary of State knows, on six occasions I have moved Ten-Minute Bills to provide for a contracting out scheme. I do not want to name-drop because my colleagues will understand and see through it, but it is fair to point out to the Secretary of State that two of his predecessors, Dick Cross-man and the present Lord Houghton of Sowerby, acted as sponsors of the Bill, as did a number of Ministers in the Department.. Other people I think of in this context are the late Brian O'Malley, who was a Roman Catholic and who found no religious difficulties in the issue, the present Foreign Secretary, and the chairman of the Labour Party health committee, my hon. Friend the Member for Brent, South, who is present. There are many others on this side of the House who take a lasting interest in these matters. The Bill was sponsored also by the hon. Member for Acton and some of his colleagues such as Dr. Anthony Trafford, a renal surgeon, Miss Mervyn Pike, Dr. Sir Malcolm Stoddart-Scott and others who took an interest in this subject and knew what they were doing.
§ Mr. Eric Ogden (Liverpool, West Derby)
My hon. Friend might also include the late Sir Gerald Nabarro, who introduced a Bill on renal transplant.
§ Mr. Dalyell
One of the reasons why these discerning people supported the proposition was that they saw the great difficulties that all of us are confronted with when dealing with this subject.
It is all very well to say that the doctors should produce more organs, but let us examine the situation as it is. In certain areas a large number of kidneys have been produced. In those areas there are often young doctors who are particularly enthusiastic and really prepared to make an effort to produce organs.
I hope that the Secretary of State will say something about the differences between various parts of the country. There are cities which use transplant organs but produce few of them. On the other hand, there are others that are very good. That depends partly on whether a doctor is 835 prepared to do what one distinguished transplant surgeon, Mr. Bewick, described as moronic. It depends on whether one is prepared to telephone the bereaved immediately after an accident.
Can any of us imagine picking up the telephone or seeing some distraught parent who only 20 minutes before has lost a son or daughter in a motor cycle crash and asking the awful question "May we have the organs of your loved one?"? Even if we were tough-minded and dedicated to the cause of trying to serve other people, I doubt whether many of us here would have the heart to ask that question at the moment of maximum grief.
It is therefore part of my contention that these matters should be decided in cold blood, long before and not in the heat of the moment. If a matter is decided in the heat of the moment, a decision is often regretted afterwards. I have received letters which I do not particularly want to quote because it would be a source of pain to individuals, We have all received pathetic letters. Some of them have been passed to me from people such as Roy Calne, Mr. Sells, Sir Michael Woodrough, Professor Brent, who has done so much, and Mr. Donald Longmore of the National Heart Hospital.
All have produced the kind of letter which in essence says "If only we had known that our boy or girl could have helped someone else we would willingly have given his or her organs". That is an understandable feeling. No one thinks of this question at the moment of crisis, and that is why there should be a system by which this kind of decision does not have to be made at a moment when those concerned are in no frame of mind to make it. Often those letters regret that the organs of a loved one were burned in an incinerator or were not used.
The crucial fact is that time is not on the side of those who wish to use the organs. I am told that deterioration sets in after half an hour, although organs can be kept at 37 deg. C. I shall not go into the technicalities of it because they are not relevant. However, unless an operation is done very quickly after death, the organs become useless. Complaint is made—the Secretary of State will correct me if I am being unfair—that often the quality of transplanted tissue in Great Britain is not as good as it is in some other countries because under our system 836 we tend to take out such organs at a later stage.
I should make it clear that I am not putting forward some new proposition that has not been thought of by anyone else, because the same thing is done in France. Perhaps this is too soon to gain experience. The same thing has been done in Israel. One religious objection comes from the office of the Chief Rabbi. I do not want to make a debating point against him or anyone else because that would be out of place in this argument. I merely say gently that this practice is followed in Israel.
An issue which must concern my right hon. Friend and his colleagues is that this argument is all very well and it is a persuasive case, but can it be put across to public opinion? My right hon. Friend may recollect that at the request of the late Dick Crossman I did a personal survey in the summer of 1969 in my constituency. I claim nothing other than that these were the attitudes 10 years ago in the Scottish industrial belt. However, perhaps a survey done by a Member of Parliament on such a personal issue is a bit more meaningful than a survey done by strangers.
If strangers go to houses on the subject and ask for the occupants' attitude on organ donation, many people would say "What?" Further, this is not a subject that people are particularly willing to discuss in front of other members of the family with whom they have probably never discussed it before. In these circumstances, I claim that my survey was as meaningful as any that has been done. The point is that such surveys should be carried out by trustworthy and discreet persons to whom people can speak.
In the course of 42 days, 364 out of 1,000 families said they would go for what one might call a contracting-out scheme. A total of 316 preferred volunteering. There were 108 families absolutely against, including—this is interesting—three State registered nurses. They said "This is all very well, but before we give our opinions on this question of transplant, let us be clear that we want the resources of the National Health Service used for what we think are greater priorities than sophisticated operations. You produce all the facilities to deal quickly with the hernias and we shall 837 listen to you." There was antagonism for a number of reasons, and that is at least understandable. The balance of 212 were "don't knows". Many among the "don't knows" had thought about the matter because they had seen the various items on the television on the MacLennan Report, and the subject was not exactly cold.
Subsequently, perhaps opinions and public attitudes have changed, partly because the operation itself has become more sophisticated and the degree of success has increased. But I do not think that there is the wall of antagonism to this proposition that many people will have us believe. The Government would meet less resistance from public opinion than they might think. If they do not accept the proposition, what evidence do they have that such a situation would be unacceptable to the public at large? My impression is that anybody who knows at first or second hand of the wretched people who are actually on dialysis or suffering from kidney troubles takes a very different view.
I understand that in the minds of many people there is a difference between kidneys and corneas, and hearts. I do not want to talk about brains because it would be impractical to do so. So let us leave that aside. In my part of the country I detected a different attitude towards hearts. There may be some feeling of heart and soul going together, and that the kidney is a bit different. I have to make that point because the antagonisms which exist are far more related to the public image of heart transplants than kidney transplants. Therefore, it is not impractical to suggest that this would not meet with the resistance that many people envisage.
I want my right hon. Friend the Secretary of State to be clear about what I expect him to do. It would be absurd, wrong and counter-productive to expect him to announce a great change of policy on a Friday morning. But I expect that perhaps today we shall start to consider the whole issue again in the light of some of the considerations I have put forward. Should not fresh thought be given in the Department to the expectation of getting sufficient organs through the efforts that are being made with kidney cards? I challenge the idea that kid- 838 ney cards will solve the problem. If we think that, we are deluding ourselves.
I promised to sit down at 11.30. Therefore, I shall keep my promise and leave it at that.
§ Mrs. Joyce Butler (Wood Green)
Before my hon. Friend sits down, will he explain how he expects the contracting-out principle to work in practice? He has drawn attention to the difficulty of donor cards often not being available when a person is involved in an accident. How would he ensure that a contracting out card or letter was available?
§ Mr. Dalyell
I have made deep inquiries about this and I am assured that, although it is expensive—no one doubts that there is a cost involved, which the Secretary of State might know—those who wish to contract out, whose right to volunteer and whose freedom is protected, can do so through a computer at Bristol. There should be no difficulty in that, although there is a certain expense.
§ 11.31 a.m.
§ The Secretary of State for Social Services (Mr. David Ennals)
I should have preferred to seek to speak later in the debate, after having heard other hon. Members on this important subject, but, as I have explained to you, Mr. Deputy Speaker, and to some other hon. Members, I have a long-standing official engagement which means that I shall have to leave early. My hon. Friend the Minister of State will be here for most of the debate, but I was anxious to take part in it and to follow what has been said by my hon. Friend the Member for West Lothian (Mr. Dalyell). I therefore crave leave of the House to speak and not wait to hear what else is said. However, I shall read the report of the debate in Hansard very carefully.
I welcome this debate and the determination of my hon. Friend the Member for West Lothian to bring up this issue on so many occasions. He has shown consistency and determination and has always argued his case with reason and understanding. Certainly we are at one in our desire to overcome the serious shortage of donor kidneys and to increase the number of transplants.
I have much sympathy with many of my hon. Friend's arguments. Certainly a breakthrough in medical science has 839 meant that thousands of lives have been saved through kidney transplants. It is now a well-established form of treatment for most patients with chronic renal failure. While awaiting a transplant, a patient usually goes on some form of dialysis. These numbers are increasing every year, but many such patients are, of course, unsuitable for long-term dialysis, as my hon. Friend has said. For many of them, transplantation offers the only alternative form of treatment. That shows the urgency of the matter. My hon. Friend may have overstated it slightly, but it certainly is hard for those who wait a long time on dialysis—and I know individually some of those involved.
The successful kidney transplant allows the patient to lead a nearly normal life, free of the restrictions imposed by long-term dialysis, such as the need to spend long periods attached to a machine two or three times each week and the rigid diet which is necessary. During the year ending June 1977, there were 671 transplants using cadaver kidneys in the United Kingdom, an increase of about 14 per cent, over the previous year—which was encouraging. But at the end of January this year the number of patients waiting for a transplant was 1,123. That is not quite as high as my hon. Friend's figures of 1,500, but it is over 1,000.
There figures show that the supply of donor kidneys is meeting only about half the demand. But I am not certain that it is the Human Tissue Act which is the major cause of the current shortage of kidneys. That Act governs the use of parts of a deceased body for therapeutic purposes, including transplantation, but it is by no means as restrictive as is often assumed.
The views of the deceased, when they are known, are of course paramount, and where the deceased has left a clear indication of his wishes, by, for example, carrying a kidney donor card—incidentally, I have more confidence than my hon. Friend has in the value of those cards—the person lawfully in possession of the body—when death occurs in hospital, this is usually the health authority, until the body is claimed by the relatives or executors—may authorise the removal of the kidneys without the 840 need to ask the consent of the patient's relatives.
Where the wishes of the deceased are not known, the person lawfully in possession of the body may still authorise removal of the kidneys if, after having made such inquiries as may be reasonable and practicable, he has no reason to believe that any relative would object. What inquiry is reasonable and practicable depends on the circumstances of each case, and in some cases a discussion with any one relative who had been in close contact with the deceased, asking him his own views, the views of the deceased and whether he has any reason to believe that any relative would be likely to object, would suffice. It is not necessary to obtain specific consent, but merely to establish the lack of objection.
§ Mr. Dalyell
Because deterioration begins to set in so early, reasonable and practicable inquiries may be very difficult and the emotional situation at that point may mean that those who might ask the questions are inhibited from doing so—for honourable reasons.
§ Mr. Ennals
There is much in that, of course, but this is an argument in favour of people carrying kidney cards, as I think do most hon. Members who are present today—I have my card here—so that at the time of an accident questions do not have to be asked of relatives. I want to deal in a moment with the problem of approaching relatives at that difficult time.
However, the most important single factor contributing to the shortage of kidneys is the reluctance of doctors in charge of suitable dying patients to identify them as potential donors and to set in motion the processes of organ removal. We can only speculate on the reasons behind this reluctance. However, it is easy to understand when one considers that by deciding to remove kidneys a doctor automatically commits his hospital and staff to a major operation, often in the middle of the night or at a time when the theatres are being fully used, for the benefit of an unknown patient in another hospital. This would apply with contracting in or with contracting out.
This decision also involves a psychological about-turn on the part of the 841 doctors and nurses caring for the patient, who must adjust from a situation in which the patient, whose life perhaps only a short while before they were making every effort to save, is given up and considered now solely in the context of transplantation. The satisfaction of knowing that perhaps two other patients have benefited must be diminished by the distance and anonymity of the recipient.
As I have said, it is often essential to discuss the question of organ donation with relatives at the time, or shortly after, they have been informed of the death of a member of their family, and at a time when shock and grief are at their highest. Many doctors might understandably find this distasteful and others have misgivings, feeling that nothing should be done which would add to the concern and sadness of the relatives at that time. However, the number of relatives who give their consent shows that, if the approach is made with tact and sensitivity, the question of organ removal is not unacceptable, even in the most distressing situation.
There is also evidence that lack of awareness by the medical profession also contributes to the shortage. Some doctors perhaps do not fully appreciate the need for more kidneys—that is the advantage of a debate like this, whatever else it does—or they feel that kidney transplantation is now such a well-established procedure that the supply of kidneys must be adequate. We must tell them that that is not so.
There are those who may be well aware of the need for more kidneys but who do not know the necessary steps to be taken to institute organ removal and arrange for their storage and transport. There are also doctors who believe that transplantation is still in the experimental stage, that the results are poor and uncertain and that it should be attempted only as a last resort. They are wrong.
It is hoped that publicity for transplantation, aimed at both the general public and the medical profession, will help to dispel some of these misapprehensions and that with time an increasing number of doctors will become familiar with the needs of patients with renal failure.
My Department is taking two steps to encourage some doctors—particularly hospital doctors—to co-operate with 842 transplant surgeons by ensuring an increasing supply of kidneys. First, a short film is being made to help transplant surgeons demonstrate to their medical colleagues the value of transplantation, categories of potential doners and the outline of procedures to be undertaken before kidneys are removed.
Secondly, on the advice of the Transplant Advisory Panel, my Department is to set up a working party to recommend a model set of basic guidelines suitable for modification or amplification to suit local circumstances, which will indicate the procedures concerning the removal of organs for transplantation and suggest ways of facilitating such operations.
I want to make it clear to my hon. Friend that, recognising that there is a lack of understanding and sometimes of co-operation on the part of the medical profession, we shall step up what we do to try to secure the co-operation of doctors.
§ Mr. Dalyell
On the working party, will there be representatives of the laity particularly people such as Mrs. Ward, who have done so much in this matter?
§ Mr. Ennals
I pay my respects to Mrs. Ward, who has done a magnificent job I am glad that my hon. Friend mentioned the work that she and her colleagues in the British Kidney Patient Association have done.
I cannot say today what the structure of the working party will be, but I shall let my hon. Friend know. I shall consider the case for lay representation on it.
§ Mr. Laurie Pavitt (Brent, South)
Will my right hon. Friend also say that representation will not be confined to the doctors but that the nurses in charge of the renal units will also be represented on the working party?
§ Mr. Ennals
As I said, I have not yet given approval to the composition, but I very much take the point made by both my hon. Friends.
Another factor contributing to the shortage of kidneys is the lack of public awareness of the need for more kidneys and the refusal of relatives to give permission for their removal—although this occurs in less than 10 per cent of cases, and may further reduce in significance as public understanding and acceptance of 843 transplantation increase. Encouraging indications that this is happening, probably at least in part as a result of the kidney donor card scheme, have been obtained by a recent but small scale survey undertaken in Manchester.
I mention Manchester because the regional health authority has undertaken a major campaign with considerable success. Therefore, it is possible to look at Manchester as an area in which there is greater understanding than in some other parts of the country. My hon. Friend was right to say that there is a great variation between one part of the country and another both in the performance of doctors in this respect and in the understanding of the public.
§ Mr. Dalyell
The refusals include quite a number of people who subsequently bitterly regret that they refused and who wring their hands and ask "Why did we do it? We would like the organs of our loved one to be used for someone else."
§ Mr. Ennals
It is difficult to analyse the motives of the 10 per cent, who refuse. I am certain that some of them wish afterwards that they had not done it. However, it is encouraging that when the question is put only 10 per cent, refuse.
I was mentioning the survey undertaken in Manchester, where it was found that in the past three years there has been a significant increase in public awareness that kidneys from dead persons can be transplanted successfully. This was closely linked with a substantial increase in the proportion of those interviewed who had considered donating their kidneys and in those who had made arrangements to do so through the use of kidney donor cards.
Contracting-out legislation, as proposed by my hon. Friend, could lead to an improvement in the supply of kidneys. I have much sympathy with my hon. Friend's case and am not arguing against it. Under such arrangements, no kidneys need be lost as a result of relatives' objections, although some would be lost through people opting out. Doctors might no longer be deterred by the delicate task of discussing the question of organ removal with relatives at a time of great distress, so the reaction would 844 be prompter and more successful. In addition, relatives would be spared the need to consider the question of transplantation in what we recognise as the very painful circumstances of sudden death. On the other hand, I think that all hon. Members will accept that for such a system to be successful it would require general public support. So far, the evidence of public acceptance is doubtful.
I congratulate my hon. Friend on the survey he carried out in his constituency. As he said, one may get a different response when a survey is done by someone whom people know and trust. I am certain that my hon. Friend's constituents know and trust him. But it is not enough to say that because my hon. Friend has convinced his constituents a similar attitude exists across the country. There is a great deal of public education and assessment of people's views to be done.
This is a highly personal matter, involving deep rooted social, cultural and religious factors, as my hon. Friend discovered from the proportion of his sample who said "No". Many of these factors are not often expressed. Our present knowledge of public attitudes towards organ donation generally and the effect that these have on the supply of kidneys is very limited. One could hardly base legislation on a survey carried out in one constituency, even one as important as my hon. Friend's. Therefore, this is an area in which we must take action as well, and my Department is taking two-fold action.
First, we shall be commissioning a public attitude survey on the subject, including the question of contracting out. This is designed as a means of assessing the general public approach. Secondly, as I announced in the House last December, in order to stimulate public debate on the matter—my hon. Friend's debate today will have helped—I propose to publish a discussion document setting out the arguments for and against amending the Human Tissue Act to stimulate that debate and perhaps bring about a climate of opinion in which the kind of legislation my hon. Friend has in mind might be acceptable.
Another important aspect to be considered is the arrangements for administering a contracting-out system. Would 845 a person who had contracted out be required to carry a card at all times, even when he crossed the road to visit a neighbour? It is almost inevitable that such arrangements would lead to mistakes being made and organs being removed from someone who would have objected.
It is unfortunately true that there have been a few cases in recent years which have provoked some unfavourable publicity. The effect that these have had on both the public and the professions alike have been reflected in the subsequent slowing up of the supply of kidneys, thus contributing to the ever-increasing waiting list.
§ Mr. Dalyell
Was not the argument that I have been trying to put forward damaged most by an incident that is in fact slightly irrelevant to it—the occasion when a patient was transported across this city in order to die in the right place? It is no part of our argument that that should happen. It is inexcusable and wrong that a patient who is still living should be transported to where an organ can be conveniently transplanted. I wish to take this opportunity to make it absolutely clear that those of us who argue this case will have none of that.
§ Mr. Ennals
I accept that. That was a mistake which no one could justify. But there have also been mistakes when it has been claimed that an organ was transferred when it was thought that the patient concerned would have been against that happening. I am merely saying that there have been such cases which have influenced public attitudes. I would not want to see the introduction of legislation which would jeopardise the supply of kidneys in this way without first being convinced that such a risk would be offset by a substantial improvement in the supply.
A computerised register would perhaps reduce the difficulties but not entirely eliminate them. It would entail considerable expense in establishing and operating a service which would need to be accessible 24 hours a day.
I raise these matters because if such legislation is to be introduced at some time we must know how we shall implement it. We cannot say "This is the principle" if we do not know how it would apply. The public must know its 846 implications. In the meantime, my Department will be continuing its efforts to improve the supply of kidneys by encouraging doctors to co-operate with transplant teams and by promoting the kidney donor card scheme. I think that my hon. Friend referred to over 11 million cards. Over 16 million have been distributed so far.
I shall be launching a new publicity campaign next month. All social security offices now have the cards and new stocks have been sent to all chemists' shops. A further distribution is to be made to all general practitioner premises next week following on from this debate. I am also considering other means of drawing attention to the urgent need for more kidneys, and I hope that all these measures will lead to an even greater interest in the number of donor kidneys over the next few years.
I have to say to my hon. Friend that I cannot prove that if everyone had received a kidney donor card the problem would be solved, but I have no doubt that if we had millions of people who indicated their commitment by carrying a donor card it would go a long way to resolving the problem.
§ Mr. Dalyell
Could those of us who are in favour of this scheme register a note of caution on my right hon. Friend the Secretary of State? There are some of us who have hesitations about whether a doctor's surgery, in which people may be nervous anyway, is the place to issue kidney donor cards. Equally, I must register a caveat. Mrs. Ward and others suggested that people ought to be presented with this decision when they go into hospital. I do not think that the doctor's surgery, or still less the time of entry into hospital for albeit an operation or a visit which a patient expects to come out of, is the most wonderful occasion to present a person with this decision.
§ Mr. Ennals
The arguments that my hon. Friend puts in relation to a hospital are even more powerful than in relation to a doctor's surgery. Usually a general practitioner is someone whom we know, recognise and understand. If we go in with our usual trouble, such as backache or whatever the problems are, I do not think we would take it amiss if the doctor said that he had on his desk a kidney 847 donor card and said "Mr. Dalyell, would it not be nice if you were to make your enthusiasms known?"
So we must see how it goes. I do not think anyone would doubt that public awareness and commitment are very important concerning what we are talking about. I think that the House will want to see the results of this campaign, which will be a national campaign, and I shall give more details of it at the right time. We want to see how it goes.
It is preferable for the House to have the reactions also to our discussion document on opting out, together with the results of the proposed public attitude survey and the results, as I have said, of our new publicity campaign before taking a decision on this matter.
§ Mr. Pavitt
I have a very small point to make. Is my right hon. Friend aware that there were kidney donor cards available to 635 Members of the House in the Library but they were taken away by order of the authorities? In this campaign, will he see that the kidney cards are put back in the Library?
§ Mr. Ennals
If I were now to say "I shall give some new instruction as to what is to happen to the Library of the House of Commons" I should be exceeding my powers, but I am much concerned about what my hon. Friend has said.
In answering a Question, I made an appeal to Mr. Speaker and to all hon. Members to carry cards. That is a very fair appeal to make. I am a little stirred by what my hon. Friend has said, and I shall seek to make inquiries and make representations if it seems appropriate.
The Government are very much aware of the need for public understanding, for the greater co-operation of the medical profession and also for us to seek the views of the public on how best the need should be met. It is not simply for us to tell them. I think that too often we tell the public what they ought to do. We should consult them about how they feel we should act, because, after all, it is their organs that we are talking about.
It may be that when we have seen the result of the educational campaign, of the survey and the rest the House will need to come back to this matter. Therefore, I am not saying to my hon. Friend that I am rejecting his proposal. It is one which 848 has great merit. But no Government would introduce legislation unless they were satisfied that it had the backing of the generality of the public.
§ 11.54 a.m.
§ Mr. Fergus Montgomery (Altrincham and Sale)
I congratulate the hon. Member for West Lothian (Mr. Dalyell) on initiating the debate. He and I have been in the House for roughly the same period. Whereas he has been in the House all the time, my service has been broken. At least he has had the luck of drawing first place in the Ballot. I can only say that I have never been in the first three. I suppose, therefore, that I shall go down as an also ran.
The subject of the debate is something that causes a great deal of concern to many people. The hon. Gentleman was right in stressing that there are many hon. Members who represent constituents who suffer from kidney failure. These people depend on kidney machines or the hope of having a successful kidney transplant. Apparently the National Health Service cannot afford the cost of equipping and maintaining kidney machines for all those who need them.
One of the tragic consequences of this is that about 3,000 people die each year. Whilst I am on the subject of kidney machines, and whilst the right hon. Gentleman is still here, I should like to express the hope that perhaps his Department will be a little more forthcoming on the vexed question of dialysis patients losing their attendance allowance. The Attendance Allowance Board seems to have drawn a very hard line and is refusing to pay the allowance to patients who dialyse on two instead of three days a week. That seems to me a very cruel decision and does not ensure the most efficient use of the machines. It is surely a valid point when one considers that there are not sufficient machines available.
On the question of kidney transplants, I believe that the aim has to be to encourage as many people as possible to donate their kidneys. In this matter I see eye to eye with the Secretary of State. I think that kidney transplants give new life and new hope to many people. The hon. Member for West Lothian and I have both read about the same man—a man who sits waiting anxiously every time the telephone rings in 849 the hope that he will be told that a suitable kidney has been found and that he can therefore have the transplant operation. It is a sad story, but there must be millions of people who would willingly be kidney donors but who know nothing at all about the scheme. I hope that, as a result of the publicity that will ensue from the debate today, there will be a surge of volunteers.
I question with the right hon. Gentleman whether the Government are giving the necessary publicity to this matter. This scheme was initiated by my right hon. Friend the Member for Leeds, North-East (Sir K. Joseph) when he was Secretary of State in 1972. The scheme was a contracting-in scheme whereby potential donors carry a card declaring that their kidneys may be removed after death. Recently the present Secretary of State announced that donor cards were now available in social security offices and that further distribution was to be made to all chemists' shops. I think he also said that certain publishers of diaries had agreed to include in their diaries material about kidney donors and that the National Union of Students was distributing cards to all students unions. That is very good as far as it goes. But I would ask the right hon. Gentleman to a report in The Daily Department of Transport, because the kidneys of many people who are concerned in road accidents could be used for transplants.
In March last year, the Under-Secretary of State for Transport announced that donor cards would be sent to all provisional driving licence applicants. I wonder why this idea could not be extended to the holders of all driving licences. I draw the attention of the right hon. Gentleman to a report in the Daily Telegraph of 1st December 1977 in which Lord Aberdare said that he had visited the Driver and Vehicle Licensing Centre at Swansea to see how feasible it might be to send out kidney donor cards with driving licences, and he had been shocked by the Department of Transport's negative attitude. I hope that the right hon. Gentleman will have a word with his right hon. Friend to see whether this attitude could be changed somewhat.
§ Mr. Ennals
I am hoping to examine whether a number of doors that have 850 been closed can be opened. I am referring not only to that particular one. I understand the problems of my right hon. Friend the Secretary of State for Transport. I announced that we would be launching a major campaign. A great deal of work is being done now in making all sorts of approaches. I entirely agree that the Department is not doing well enough. That is why we have decided to concentrate an a major campaign.
§ Mr. Montgomery
I am grateful to the Secretary of State.
While we are on the subject of this great campaign, I also draw the right hon. Gentleman's attention to the fact that the idea was floated that kidney donor cards should be available at post offices, but this did not get off the ground because the Post Office insisted that it would have to charge the Department of Health and Social Security £100,000 in the first year and £68,000 annually thereafter. I find all this very difficult to comprehend. Can something be done to change the attitude of the Post Office on an issue which is one of life and death to many people?
Even allowing for financial factors, there are avenues which could be explored. I was delighted to hear the right hon. Gentleman's announcement this morning that donor cards are likely to be available in doctor's surgeries. Have approaches been made to employers, particularly large employers, in the hope that they will be prepared to issue donor cards to anybody interested in participating in the scheme? I believe that if that were done it would result in a big increase in the kidney donor transplant scheme and that we should be able to reduce the pressure on machines.
One of the difficulties envisaged by the hon. Member for West Lothian is that kidneys, if they are to be used for transplant, must be removed as quickly as possible after the heart has stopped beating. If someone does not have a kidney donor card, an approach must be made to his relatives. As the hon. Member and the Secretary of State said, the approach must be made to relatives either just before someone dies or just after he dies. No one will dissent from the view that that is not the most conducive time to talk to people who are in a state of anguish.
851 The hon. Member for West Lothian argued that we should have a contracting-out system. His motives are excellent, nobody can question his sincerity, because he has been fighting this battle for many years. He certainly has precedents to encourage him, because France and Israel operate a contracting-out scheme and I believe that Sweden also operates some sort of scheme. The difficulty seems to be the delay in tracing relatives and securing their permission, and this is an all-important matter.
I think that in Norway kidneys can be removed without permission if the family cannot be contacted. That could lead to serious problems in Britain. First, we must accept that some people sincerely object to the whole idea of transplant surgery, and their views must be respected. Secondly, great care would have to be taken to ensure that the dead person had not objected and refused categorically to be a kidney donor. I agree again with the right hon. Gentleman that a mistake in such a case could do great harm to any contracting-out scheme. Again, therefore, I am at one with him that the only solution is to increase the number of kidneys available for transplant.
In a debate initiated by the hon. Member for Wood (keen (Mrs. Butler) on 7th November last, the Under-Secretary of State for Health and Social Security said this:The obstacle to such an expansion of the transplant programme is not a shortage of hospital facilities but a shortage of kidneys. The Government are anxious to do what they can to increase the number of kidneys available for transplant … The fact that we are running hard just to stay in the same place should not make us doubt that, as a result of the wide extension of the kidney donor card scheme, there will be many more donors in future."—[Official Report, 7th November 1977, Vol. 938, c. 449–54.].I believe that the only way that this can be achieved is by a determined publicity drive and by substantially increasing the number of places at which cards are available. I take a great deal of satisfaction in the right hon. Gentleman's speech today and can only express the hope that, as a result of the debate and of the action the Department of Health and Social Security will take, we shall see a great increase in the number of kidney donors.
§ 12.5 p.m.
§ Mr. Eric Ogden (Liverpool, West Derby)
I take up a point raised by the hon. Member for Altrincham and Sale (Mr. Montgomery), the publicity campaign. There could be two types of such a campaign. First, there could be the help that should come from the Post Office with cards being available in post offices, and from the availability of cards in the Library of the House. I hope to take up that point with the Services Committee.
Secondly, there is the other type of campaign which is directed to what one might call the climate of public opinion. A television series such as "General Hospital" could use a story about kidney transplants and the need for donors. That might be sublimal advertising, but it would be helpful in creating the background opinion and would help people to understand and appreciate the difficulties involved in kidney disease at the moment and the opportunities that exist to donate kidneys.
I would not go so far as to say that if all the doctors in the programme "General Hospital" had said two nights ago that they intended to go out and vote Labour that would have affected the result of the by-election last night. However, people watch such programmes and they are influenced by them.
I join the hon. Member for Altrincham and Sale in congratulating my hon. Friend the Member for West Lothian (Mr. Dalyell) on raising this matter, not for the first time and not for the last time, and on the very reasonable and responsible way in which he did so. Clearly, my hon. Friend is a man of many talents. The fact that he has taken a close and continuing interest in devolution over the past few weeks does not mean that he has neglected other matters, though some might wish that he had done so.
The question of the law on transplantation of human tissues is one on which my hon. Friend and I have differed in the past. We may differ about it in the future. We may resolve some of the differences that remain between us today.
When I first saw the motion on the Order Paper, I recalled the debates and discussions on this subject over many 853 years in which hon. Members have participated. My hon. Friend had at least one Bill. That was on 11th December 1974.
My first parliamentary involvement with this matter was, I thought, in about 1970. I discovered that it was actually in 1968—how time flies. On 13th March 1968, 10 years less 10 days ago, Sir Gerald Nabarro—of proud and happy memory on both sides of the House—sought leave to introduce a Bill on Renal Transplantation under the Ten Minutes Rule. Sir Gerald put his case in 10 minutes and I put my case briefly in about three minutes. I opposed the introduction of the Bill.
One strange feature of that debate was that a then Back Bencher, my hon. Friend the Member for Glasgow, Shettleston (Sir M. Galpern)—a worthy of the Chair from time to time—attempted to intervene in the debate under the Ten Minutes Rule and was rebuked by Mr. Speaker for breaking the rules of the House. That is an occasion of which I shall try to remind my hon. Friend on another occasion. Again, how times change. My hon. Friend the Member for Shettleston was one of the Tellers for the Noes. We lost by 155 to 40 and leave to introduce the Bill was granted.
I do not usually quote my own speeches, but my words then have stood the test of time:there is a balance between the dignity and the respect of man, on the one hand, and the needs of science, of helping fellow men, on the other. This is a very fine balance indeed. I put it to the House that the human body is more than just flesh and blood, more than chemicals and substances, more than just a collection of spare parts. I agree that it should be the right and the duty of a man"—or woman—in good health and of sound mind to consider seriously and quietly how he wishes to dispose of his body after death. I suppose that by education and encouragement someone could decide in life and in good health what he should do with his body after he has gone, whether he wants to donate his eyes, or kidneys, or the whole of his body. But this should be a conscious act. He should contract into this situation rather than have to contract out of it afterwards."—[Official Report, 13th March 1968; Vol. 760, c. 1380–81.]As I say, my argument was defeated by an overwhelming majority. Permission was given to introduce the Bill.
854 The Official Report of the Standing Committees, Session 1967–68, Vol. IV, and slotted in between the Sunday Entertainments Bill, the National Lottery Bill, the Divorce Reform Bill and the Employer's Liability (Defective Equipment) Bill is the Renal Transplantation Bill. The then Minister, Mr. Kenneth Robinson, said very much the same thing in that Committee as my right hon. Friend said this morning. He referred to the need for a great debate, for more information, for more public concern and for more public consent.
Ten years have passed since that statement was made, and once again the same sort of statement is being made by my right hon. Friend today. I wonder what has happened to the great debate and to the campaign to educate the public, at least at official level. I am not making any personal criticism in any way, but it is apparent that what we had hoped would happen has not happened.
The Bill introduced by the then hon. Member for Worcestershire, South went in with four clauses. The Committee was a model of good sense and made excellent progress in four hours' discussion. The Bill came out with nine clauses. We added certain safeguards, certain exclusion clauses. There was to be no one over 65, no one who was deprived of his liberty and no one who was mentally handicapped. The purpose was that there should be a free choice and that no one should be in a position of acting under compulsion. We added a conscience clause. The doctors taking part in making the decision on whether death had or had not occured were to be completely separate from the doctors who had anything to do with the transplant operation.
Changes were made in that Bill which, for understandable reasons, are not written into the motion before us today. But I hope that my hon. Friend the Member for West Lothian, whose knowledge of this question is very considerable, will accept the need for the safeguards to which I have just referred.
It was that debate, in 1968, which caused me to take out a kidney donor card. I do not know whether I am doing something illegal, but the card is in my pocket most of the time. I do not claim any great credit for having taken up the card, but certainly the need is still there. 855 It gives me a new meaning to being a "card-carrying Member" of the House. The question now is whether a change should be made from contracting in to contracting out.
I was congratulated last night by my hon. Friend the Member for Lanarkshire, North (Mr. Smith) on being consistent on the Scotland Bill. Some months ago I said that I was a Third Reading anti-devolutionist. I confirmed that by going into the anti-devolution Lobby on Third Reading. Today, however, I cannot claim to have maintained my consistency on the donation of kidneys. There are times when suddenly an argument can persuade one to change an opinion, and there is sometimes a particular point at which such a change of mind is known to take place. I cannot point to any one occasion over the least 10 years when I can say that the very persuasive argument of my hon. Friend the Member for West Lothian convinced me that he was right and I was wrong, but I have to acknowledge that what I asked for 10 years ago has been tried but has not been as effective as I hoped it would be.
I am sure we all wish that contracting in had met with much more success, so that there would be no need for contracting out. The question today, I believe, is whether the living or the dead should be regarded as more important or whether we should not be able to respect the dead and yet give the living the chance that they ought to have.
§ Mr. Dalyell
Those of us who argue in favour of contracting out would naturally have preferred contracting in, had we thought that there was any chance of producing the matching tissue that is necessary and, indeed, particularly the the wide ride of matching tissue for those who are in great difficulty unless a great many more organs are available than is likely at the present time. The rare cases are those who often suffer the most. We have to have not only the numbers but a great many more than the numbers actually needed in order to suit all demands.
§ Mr. Ogden
I am grateful to my hon. Friend.
The question in 1968 was one of contracting in or contracting out. Today, I believe that we have a different question to answer. Whom should we try to 856 help? Who are to have priority, the living or the dead? The dead will be respected and there will be no great butchering of bodies if the motion is passed. There will be no great bank of spare parts. There are difficulties about whether the proposal should apply only to kidneys or to other organs, but there will be no question of tearing up bodies immediately whenever people die, in or out of hospital.
After a long period of years—10 years less 10 days, to be precise—I now say to my hon. Friend that the other method has been tried and that I am concerned particularly with the people now living who urgently need help. The method suggested by my hon. Friend now seems to be the only way to give that help effectively. I see no practical reason why the information concerning whether a person has contracted in or out, or has made or not made objections, could not be obtained by computer. It should be a practical possibilty for a doctor in any hospital at any time to discover whether a person available for a transplant operation has made objections.
I reiterate that the contracting-out system was not as successful as was hoped. I believe that now the living have to be given higher priority than the dead. If my hon. Friend will accept the safeguards to which I referred, I believe that today there will be no differences between us.
§ 12.17 p.m.
§ Mr. John Hannam (Exeter)
I am sure that the whole House is as grateful as I am to the hon. Member for West Lothian (Mr. Dalyell) for giving us the opportunity to discuss this very important subject. He made one of his usual thoughtful and sincere speeches, with a great deal of common sense in it, but I still find myself on the opposite side of the line to the hon. Member for Liverpool, West Derby (Mr. Ogden), in that I feel that we have not yet done enough to justify a move from the voluntary system to contracting out.
Today we are discussing the plight of thousands of kidney patients who must be full of despair that, despite the fact that medical knowledge can provide the solution to some of their problems—although not all of them—they are unable to receive the benefit which would arise 857 from a much greater use of transplants and of dialysis machines. There is no doubt that lives could be saved if existing medical knowledge were applied on a wider scale.
All those who are involved in working for disabled people are aware that kidney failure is not an unknown or insoluble problem, which is the case with some of the crippling diseases. It is appalling that in the era of multi-million pound expenditure we seem to be unable to provide the necessary resources on a scale which would save the lives of some of these patients. I do not believe that there is any immediate solution to the problem, but nevertheless we face a stark and appalling situation.
In a recent tragic case a young boy ran away from home and died. The newspapers were full of headlines and the media paid tremendous attention to the case, yet each year from 60 to 80 young children have been dying because of renal failure and because of a lack of facilities for treatment. We are very grateful that, following recent action by the Secretary of State for Social Services, the position has improved this year.
On 29th November last, the all-party Disablement Group met the president of the British Kidney Patients Association, Mrs. Elizabeth Ward, and her officers, and we were then presented with the stark facts. The House is not very crowded today but that does not mean that many hon. Members have not a great and sincere interest in the problem. On that occasion we had the largest attendance of any all-party group meeting to date. For the first time since I have been involved in any group, every party in the House was represented at that meeting. After the meeting we had discussions with the Secretary of State on 6th December. We were extremely pleased to hear that he had already taken action in offering 48 dialysis machines to the regional health authorities. If those were taken up then by all the regional authorities, at least this year all children could be treated for renal failure.
As the Secretary of State pointed out at that meeting, transplants are by far the better solution to the problem. Most people are unsuited to long-term dialysis and transplants give them an almost nor- 858 mal life. Therefore, this is the option that we should pursue.
The cost of providing an adequate number of dialysis machines throughout the country is enormous. The equipment alone costs £6,000 and on top of that it costs £10,000 a year to run and maintain. If a dialysis machine is used at home, it costs £6,000 a year, and it means total disruption of the life of the person involved. Current spending of £17.5 million would have to be increased four fold over the next five years if we were to continue the dialysis solution.
I pay tribute to the doctors and nursing staff who provide the existing services. I have met them in my constituency and I know the extent of their dedication, and the measures that they take to deal with emergencies. In the recent heavy snowstorms in the South-West they were working around the clock. Helicopters were flying out to remote villages and towns bringing in patients for dialysis treatment.
My hon. Friend the Member for Stretford (Mr. Churchill), for example, gives his services at a moment's notice in flying transplant kidneys in and out of the country when matching cases crop up. This is an example of the tremendous dedication of people to the cause of transplants. Transplant surgeons, dedicated to their work, search the country for suitable kidneys. I know of one who whenever he hears of a crash, rings up the casualty wards to make arrangements to rash a kidney into his theatre for someone who has been waiting for months, or perhaps even years.
Unfortunately, we have done very little to help these people. It is our failure—the Government, Parliament and all those concerned—to act earlier in providing voluntary donors which is responsible for the present situation. I believe that we can take more positive steps to help. I lend my support to any campaign or action that will end delays in producing renal transplant kidneys.
I do believe that introducing an opting-out scheme at this stage is the right step to take. If, after a period we find that our efforts—and not just our partial efforts—to achieve full distribution of donor cards have not succeeded and there is still a shortage of kidneys, possibly I, like the hon. Member for West Derby shall switch to the other side and lend my support to 859 the opting-out scheme even though I believe that this will be very difficult to introduce.
§ Mr. Dalyell
But it is not for want of trying on the part of Ministers of both parties. The hon. Member cannot say that his right hon. Friend the Member for Leeds, North-East (Sir K. Joseph) did not try, or that the late Dick Crossman did not try. The Department and Ministers of all parties tried hard enough. But however hard they tried to organise this, the necessary kidneys were not forthcoming.
§ Mr. Hannam
I hope that I will show that, despite the efforts of Ministers in Governments of both parties, there has not been a determined effort to achieve full distribution of donor cards. The figures that we have heard today refer to an 18 per cent, to 20 per cent, distribution. Yet all the polls and surveys indicate that a 50 per cent, to 66 per cent, distribution should be possible. This is the emphasis that I want to place on the campaign.
In April last year a Gallup Poll was carried out which showed that 62 per cent, of the adult population were willing to donate kidneys after death. Yet from the number of cards distributed less than 20 per cent. are in possession of a donor card today.
The all-party Disablement Group has been busy offering cards to hon. Members and it is significant that even hon. Members have not had an opportunity to receive cards. I know that the Secretary of State did not mind my challenge to him at Question Time a few weeks ago to produce his own card. He did so, and so did other Ministers in his Department. It is up to us to give a lead to make the system of distribution workable.
§ The Minister of State, Department of Health and Social Security (Mr. Roland Moyle)
I have developed a practice whereby, when hon. Members write to me to ask what the Government are doing about the extension of the kidney dialysis facilities, I include a couple of donor cards with my reply to encourage the hon. Member to fill one in and pass the other on to his constituent who raised the matter. I hope that in this way we can give a lead.
§ Mr. Hannam
The Minister is quite correct. If we want to make the system work, we must make every effort to distribute these cards. Much more must be done. Not enough has been done in the past.
We hope that pressure will be exerted on other Ministries, such as the Department of Transport, which has been denying facilities which should be available for the distribution of cards. I believe that we could easily achieve a situation in which 50 per cent, of the population carried donor cards. All the surveys in schools and different groups in society show that the majority of people are prepared to donate their kidneys and carry the card. I cannot believe that the mass distribution systems in the Post Office, chemists, local authority offices and schools cannot be mobilised to win the war of distribution. This is the crux of the argument.
In putting forward a contracting-out system the hon. Member for West Lothian has claimed that the voluntary system does not work because distribution has not worked. I believe that it can be made to work because we have not yet carried out all measures to achieve distribution. Electoral returns, and driving and television licence reminders could be used for the distribution of cards, and once a card is received it will be carried year after year.
Before we adopt a contracting-out system we should aim to achieve a successful voluntary system. We would run into a great deal of hidden opposition and trouble if we tried to impose a compulsory system before we had made a proper attempt to educate the population in the question of kidney donation.
It is important that we should obtain the support of many young doners because their kidneys are the most suitable for transplant and the ones that are most needed. I believe that the schools should be very much more fully involved in this campaign. There have been certain schemes carried out, one of them at Crewe, in which there has been a massive voluntary distribution as a result of propects launched in schools.
My main reason for opposing an opting-out system is that I do not see how at the time of an accident it can be 861 determined positively whether the deceased was in favour or opposed ethically to the removal of his other kidney. I have spoken to a number of doctors and others who are involved in this subject and they have all emphasised this point. However, they are satisfied that when a card is found on the deceased person there is a legal right on the part of the medical profession to remove the kidney. If there were an opting-out system, doctors would still be in some doubt and there would be difficulty in ascertaining whether the person was opposed to the removal of his kidney.
§ Mr. Dalyell
There is a distinction between family difficulties and legal difficulties. In discussions carried out by the hon. Gentleman he may well have discovered from Dr. Gavin Thurston, the Inner West London coroner, that very few coroners would put doctors in legal trouble if they had to take a decision in ambivalent circumstances.
§ Mr. Hannam
If it came to that legal stage, that might well be the case, but I am talking about what happens in hospitals where the doctor or local general practitioner is involved. I am sure that those doctors favour a voluntary system with the carrying of a card, and are not satisfied that a switch to the other system would work as well. They feel that they will face many marginal cases and reaction after the event. That is one reason why at this stage I do not favour the opting-out scheme.
The impact of kidney failure came home to me quite dramatically recently when a neighbour of mine in the village where I live, Mrs. Holding, who acted as a daily help in my family and who was an active, jolly country woman, suddenly collapsed just before Christmas with kidney failure and nearly died. She was whisked into hospital and is now a home dialysis patient. She has received wonderful attention and treatment from the renal unit in Exeter and is now back with her family in her council house. But she has seen her life turned upside down quite dramatically. She has to dialyse three times a week, which obviously weakens her considerably. She and her family now face a great deal of extra expense, but she will receive the attend- 862 ance allowance because she is receiving dialysis three times a week.
I was involved in leading a campaign in 1972–73 to obtain the attendance allowance for kidney patients. It would be totally cruel and unfair if, as a result of switching to a twice a week dialysis machine, that woman were to lose her attendance allowance. Naturally the costs to her family would not alter. One can imagine the extent of the extra burden placed on that family because of that woman's condition. I emphasise that it would be most unfair for the attendance allowance to be taken away if the treatment were carried out less frequently because of an improvement in the machine. I hope that the Minister of State will take this matter in hand.
Although I oppose the motion, I welcome the work of the hon. Member for West Lothian on this important topic and his endeavours for kidney patients. I wish to offer him the words of a young girl, Glynnis Malitskie, who wrote to the British Kidney Patients Association magazine in the Jubilee Appeal. That young girl's kidneys failed at Christmas 1974, she has since been through dialysis, and she said in an article in the magazine:It is now March 1977, I had my transplant on the morning of 17th December 1976. I have written about dialysis. Some day I will write about transplants, but every day I bless all those who worked so hard and patiently to prove to me that both dialysis and transplantation are worth it. I think of everyone connected with the science, the machines, the logic, the humour and sadness, the physiology and research and devotion to it all.I oppose the motion, but strongly support the cause which the hon. Gentleman seeks to advance.
§ 12.36 p.m.
§ Mr. Laurie Pavitt (Brent, South)
It is a great pleasure to be called to speak following the contribution of the hon. Member for Exeter (Mr. Hannam). He was able to put on record the excellent work carried out by the all-party Disablement Group. I wish to thank the hon. Gentleman as secretary of that group and also to include in those thanks my hon Friend the Member for Stoke-on-Trent, South (Mr. Ashley), who is the group's chairman.
Outside this House, it appears that the only news that interests the newspapers 863 is the various clashes that are always alleged to take place between Tories and Labour. But we know that there are many topics, such as the important matter of how to deal with cases of renal failure and other disablement matters, in which there is common agreement across the Benches. I thank the hon. Member for Exeter for reading to the House the moving comment by a young lady kidney patient, and I join her in expressing gratitude for all the work that the hon. Gentleman has carried out.
My hon. Friend the Member for Liverpool, West Derby (Mr. Ogden) concentrated our minds magnificently. He said that we must decide whether we are in favour of contracting in or contracting out. My hon. Friend, having been connected with the subject for 10 years, favoured a contracting-out system. The hon. Member for Exeter came down on the other side of the argument. I join with those who wish to support the motion. I shall not weary the House with my reasons, because they have been adequately set out by my hon. Friend the Member for West Derby.
I wish to deal with two points mentioned by the hon. Member for Altrincham and Sale (Mr. Montgomery). He pointed to the nonsense concerning the methods of paying attendance allowance to patients suffering from renal problems. I agree with the hon. Gentleman. It is enormous bureaucratic nonsense that there should be these various measurements. They remind me of what used to happen in compensation cases when measurements had to be made when a person's leg was amputated. There is now a similar comparison made when allocating attendance allowance to patients receiving dialysis treatment. I believe that a person is either on dialysis or he is not—and that applies whether he is on the machine once, twice or three time a week, or for three hours or 10 hours a week. I believe that the regulations need to be changed.
I had the privilege of being taken down to one of the major centres when the Department of Transport decided to include donor cards with provisional driving licence forms. I can see no reason whatever in mechanical terms, because the whole process is highly automated, why such a card should not be included each time a licence is processed through 864 Swansea. That could be done whether a licence was provisional or a renewal.
Many tributes have been paid to my hon. Friend the Member for West Lothian (Mr. Dalyell) relating to the work lie has carried out over the years, My hon. Friend's speech was one of the most closely reasoned and, indeed, reasonable speeches I have heard in this House for a very long time. I believe that all the newspaper comment about my hon. Friend in the last few weeks should have included some reference to his work in this campaign, because that would give a much fairer idea of my hon. Friend's role in this House.
I congratulate my hon. Friend on his persistence. In my experience, persistence in this House carries more weight than pugnacity. I do not want to depress my hon. Friend, but I wish to remind him that the late Sydney Silverman had to introduce 19 Ten-Minute Bills before he finally saw capital punishment abolished. I hope that my hon. Friend will be more fortunate, although even he has attempted six times to put this matter right. However, judging by the comments of my right hon. Friend the Secretary of State, I think we shall not have to wait very long before we see more progress.
The only omission from my hon Friend's remarks was his failure to mention that the Liberal Party also supports most of his efforts. I am thinking particularly of the time when Lord Winstanley was Liberal Party spokesman on this topic.
§ Mr. Dalyell
I should have mentioned that there has been strong support in another place, particularly from Lord Platt.
§ Mr. Pavitt
I am grateful for that intervention.
We are concerned with a two-sided coin—the problem of the patient with renal failure, and the way in which people are trying to solve the problems. I want to direct most of my comments to the people who have the heartache of selection.
The Royal Free Hospital has probably done more in pioneering home dialysis than any other hospital in the country. I should like to quote from a report on selection given to a nursing conference by a Royal Free nurse. The report 865 covered a 10-year period from January 1967. It says:There was a total of 216 patients, 4 of whom were excluded because of transfer to other units. Of the remaining 212, 204 were trained and established on home dialysis, but seven of these had to return to centre dialysis because of breakdown in the home situation; eight were not considered suitable for home dialysis; and there were 59 deaths.In the main, that programme showed a good deal of satisfactory work. The report goes on:Of the 212 patients, transplants were performed on 122. Sixty-six were successful, of which 49 are still functioning: the period free from dialysis ranged from seven years to two months. Seven patients returned to the dialysis programme when their graft failed and 10 died with a functioning graft. Since acceptance for treatment was for a combined programme of dialysis and transplantation, all patients, regardless of their form of treatment, were considered suitable for this study. The effect of four objective factors considered relevant to the survival and rehabilitation of these patients were chosen; they are: medical history; age; sex; marital status at the time of selection for treatment".Someone had to make the decision that 90 people would not have transplants and would either continue on dialysis for the rest of their lives or die. That is a daily responsibility of the people serving in hospital renal units.
It is a doctor's decision, but nurses are also involved. Nurses have a special relationship with patients on renal dialysis. These patients are not in and out within 10 days, and half the job of a nurse is psychological. She has to build up confidence and an acceptance that these things happen. One can imagine her feelings when, having had a relationship with a patient, she is consulted by a doctor who asks whether they should let that patient, who may be a woman with three children, die. Unless we can find a way round this problem, it will be an absolute disgrace.
However, so many good things are happening that I do not want to concentrate only on the bad aspects. The European Dialysis and Transplant Association, an organisation of doctors, has done a tremendous amount in getting standards accepted throughout the world and has laid down a number of criteria which enable renal units all over the world satisfactorily to decide about dialysis programmes and the inter-relationship between dialysis and transplants.
866 I also commend the European Dialysis and Transplant Nurses Association, which meets regularly in one capital after another and enables those doing the job to exchange experiences. They have established some of the standards that have been so effective and have made a contribution to the progress that has been made by nursing and in treatment. I pay tribute to the conferences and the way in which British delegations have more or less been the key to the conferences at Helsinki, Copenhagen and Vienna. In June there is to be a conference in Istanbul, and I am grateful to the DHSS for supporting this exchange because the nurses in this country have made a special contribution. This is a small but specialised sector of nursing.
The relation of more donors to adequate dialysis has been pointed out by my hon. Friend the Member for West Lothian and others. Just as we need adequate transplants, we also need adequate dialysis, and at present there are not enough machines.
On 1st April, the Department will be placing a purchasing contract for kidney machines which will be only half the number of the average of the last three years. It may be that the Department feels that it has stocked up, but I have a manufacturer, Bradleys, in my constituency and I naturally take a keen interest in what it is doing. The firm tells me that the purchasing contract next month is to last for two years but that the industry is capable of fulfilling the order in one year. I hope that the Minister of State will consider whether this can be done.
Planning is in an appalling muddle because autonomy must be given to health authorities to spend their resources, but the Government have priorities that they hope the authorities will operate. For example, on the ordering of kidney machines, decisions on where the money is to go rest with the health authority, but the central purchasing department places the order and it is difficult for the department to know what the demand will be. It is surely not beyond the wit of man to have much closer collaboration between the purchasing department and health authorities.
The House should pay attention not only to the number of kidneys available 867 but, equally important, to the right type being available. As hon. Members know, transplants have to be accepted by bodies, and science has given us a number of useful tools that can help. One of the most useful is tissue typing. Computers can be used to get tissues which match.
§ Mr. Dalyell
My hon. Friend has raised an important issue. The Secretary of State says that the gap is 1,160, but my hon. Friend will know that, because of the difficulties of matching, the real gap is much larger, particularly if rare groups are to be catered for.
§ Mr. Pavitt
I agree. It will have been the experience of hon. Members in other areas of public life that, where demand is greater than supply, the number of people put on waiting lists is fewer than if there were an increased supply. My hon. Friend's figures are likely to be more accurate than those of the Department and, if anything, are probably an understatement.
The Secretary of State put his finger on the difficulty of collaboration and cooperation between doctor and doctor and surgeon and surgeon over what goes on in hospitals. I welcome my right hon. Friend's comments and I hope that there will be much greater co-ordination between doctors in charge of the lives of patients. Naturally, this must be their prime concern and due respect must be paid to the dead. Doctors must do everything possible for their patients, but I hope that they will also show some concern for the living in certain circumstances.
Unless we can secure greater collaboration at hospital level between the doctors concerned, with a greater understanding of these matters not only among doctors who are engaged in transplant work but among those who are not, we shall still have a continuing problem, first, in being able to match tissues and, second, in being able to get the transplant done at the time when it is required.
As has already been said, the computer at Bristol is capable of keeping a record and making the tissue-matching information immediately accessible. The difficulty is that the patients who will have their tissue type duly recorded on the computer tape are those who have had an injury or, perhaps, those who are more 868 or less chronically ill—that is, those of whom one has some knowledge—since one would not undertake the tissue-matching process for every person. In many cases it would not be needed and would be inordinately expensive. Somehow, one has to isolate the people who would be willing to help, and this is where my hon. Friend's motion serves a valuable purpose.
If we had a contracting-out system, with good public understanding, a number of people might well say "I shall elect to have my tissue type taken, and I wish to be recorded as someone willing to give my spare parts, if necessary."
§ Mr. Dalyell
Through an oversight, the Secretary of State did not answer the question very properly put to him by my hon. Friend the Member for Wood Green (Mrs. Butler) about the cost of the Bristol set-up should there be a contracting-out system. I wonder whether my hon. Friend the Member for St. Pancras, North (Mr. Stallard), who is present on the Front Bench, could pass on to the Minister that some of us would like to have any figures which are available as to the cost of the Bristol set-up should there be a contracting-out scheme.
§ Mr. Pavitt
That would be most useful. I feel sure that, if we do not get the information one way, my hon. Friend or I—or other hon. Members—will be able to get it in another way. The House could do with far more information about Bristol. I was speaking to the people at Bristol this morning. It is a very imaginative scheme, and I wish that the public knew more about it. Through the Bristol computer we are able to match tissues from all over Europe.
I can give the House an example though a rather sad one, to illustrate what I mean. A nurse was in charge of a renal unit, and at 10 o'clock on a Saturday night a message came through. If a nurse is in charge of a unit, she cannot suddenly call in others but has to get on with the job herself. A message had come that a kidney was on its way from Stockholm and was due to arrive at Heathrow at such-and-such a time. The unit had to be manned, with the transplant team called in and the nurses in, the dialysis patient ready and prepared, and so on. Eighteen hours later, that same nurse came off duty.
869 There was a sad end to the story, I am sorry to say, because the young woman concerned—a mother of 23 with two children—unfortunately did not take the transplant. There was rejection and the operation was a failure. But for one failure how many successes are there, and how many more could there be?
There is great devotion shown by ah who work in this field of medicine, and, as I say, there is international co-operation. It is possible for kidneys to be flown out to France, to Germany or virtually anywhere in the world, with proper tissue matching. This is the kind of modern method now being used, and the House should give it full support.
Unfortunately, the EEC has been inclined to drag its feet, as in so many other matters, but I am pleased to say that the EEC has at last got to grips with the matter and the study phase is probably now finished.
It is all the more important, therefore, that within the Common Market Britain should be demanding more planning and that the planning should start now, not in four years after a lot more papers have been passed round among the EEC countries—the sort of EEC documents which we discuss at one o'clock in the morning which make little or no difference to anyone or anything. We should be demanding a greater sense of urgency in the implementation of plans and, even more important, that funds should be made available. The EEC should make funds available for this work.
I believe that public opinion, about which my right hon. Friend was greatly concerned, will be greatly educated not only by this debate but by a further Bill, if my hon. Friend the Member for West Lothian introduces it, as I hope he will. The very fact of legislation coming before the House will have an influence upon public opinion. On a number of matters, we in this House can be ahead of public opinion. When people know about a specific specialist subject, they can move ahead of public opinion, and I feel that we should be in the lead, not waiting for public opinion to move before we move. We should be moving in order to carry public opinion with us.
§ Mr. Dalyell
Some great preparatory work has been done by Mr. Skegg, a 870 young Oxford don, who has turned his mind, with considerable effect, to the whole issue of what constitutes clinical death, which is one of the major problems here and which would be directly relevant to the production of a Bill.
I should have some hesitation about the Ten-Minute Bill procedure, which, as my hon. Friend knows, is all very well for propaganda purposes but is not well suited to a deeply serious matter such as this. It is my hope that a Government will bring in a Bill. All I am saying is that much of the work from the legal point of view has been done by Skegg and others.
§ Mr. Pavitt
It is sad that the question of clinical death has been highlighted in the past few weeks by one or two dramatic cases, one of them involving hooliganism. The public have been made aware of the problem. Hitherto we have had, so to speak, an attachment to the heart as the source of life. Probably St. Valentine left us with that idea, and we are inclined always to think of this little pump as being the vital organ, although it is simply a pump and the brain is the vital organ. As my hon. Friend has said, advances in this aspect of the matter enable us to move even further than we otherwise could.
I hope that the House will pass the motion today and, by so doing, give encouragement to all those who are working in renal units as well as those in the local authorities who are, for example, altering domestic plumbing to make it suitable for home dialysis. I think also of community physicians and many others who are working in this field. I hope that all of them will be encouraged by the House today to realise that they are not working in the dark and are not working alone. We have thrown some light on the subject, and I trust that that light will lead us, as my hon. Friend the Member for West Lothian said, towards the saving of more than 1,000 lives a year.
§ 12.58 p.m.
§ Mrs. Joyce Butler (Wood Green)
I join with all those who have congratulated my hon. Friend the Member for West Lothian (Mr. Dalyell) on not only initiating the debate but giving us an opportunity to consider this important subject in rather more depth than is usually possible.
871 As my hon. Friend knows, I believe, my interest in the subject was heightened by a case to which I referred in an Adjournment debate last November, to which reference has already been made. This was the case of a small boy who underwent a tonsillectomy operation. Apparently, this was quite successful, but he suddenly collapsed. He was put on a life support machine, and his mother felt that she had been subjected to undue pressure by doctors at the hospital to allow his kidneys to be removed at a time when he was still on the life support machine and, so far as she was aware, he had every hope of recovery.
I suppose that, as a result of that experience, my feelings on the matter have been very much directed towards the parents' point of view and the donor's point of view. I feel strongly that we must keep that aspect of the matter very much in mind when we are considering this important subject.
There is no doubt that the idea that the dying can help the living is a very attractive one and that many people, including those who are already registered as donors and many who perhaps are not yet aware that they can be, value the ability that they have to donate their kidneys or other organs to those suffering from disease. To me it is part of the value, as it is to them and to society, that they make the gift freely and of their own choice. This is very important, which is why I am a little uneasy about the scheme put forward by my hon. Friend the Member for West Lothian. There is a great value in their donations which would be lost if his scheme came into operation, and that generosity of spirit would also be lost in a compulsory scheme.
There is another aspect which worries me about the scheme. I accept what my hon. Friend said about the survey which he undertook in his constituency and the reaction of people there. However, very many people are unwilling for their bodies to be used in this way. Sometimes it is for personal reasons which we may think are rather old fashioned. Sometimes it is for religious reasons. As we have been reminded by my right hon. Friend the Secretary of State, social and cultural factors also come into it.
872 Most of the people who feel like this do not wish to think about dying while they are still fit and well. It is probable that very few of them, even though they are strongly opposed to the idea of their organs being used for transplants, would contract out if such a scheme came into operation. There is also the difficulty of how people would know, if such a scheme came into operation, that they were required to contract out. We all know the difficulty of making statutes known to people who are affected by them. We have that experience in 101 different ways.
Many people would not be aware that they needed to write down their views in some way, or pass them on to a computer centre, or whatever system was suggested.
§ Mr. Dalyell
It would be deeply wrong if I gave the impression that I brushed aside all the considerations which my hon. Friend is outlining and which she outlined in her Adjournment debate in November, which I attended. However, I put the other side of the coin. Let us suppose that her young constituent had had something wrong with his kidneys and she had been confronted by a mother who was equally worried. Would not she have wanted some kind of possibly unusual matching tissue to be available? The heartaches operate on both sides of the argument.
§ Mrs. Butler
I accept entirely what my hon. Friend says. He is perfectly right. But I feel that to some extent the balance of this debate has been in the other direction. It is necessary to keep a balance in these matters.
I agree that the heartache is not all on one side. It is on both sides. But I am especially concerned for people who do not agree with the view being put forward today. For one reason or another, they are not happy about their organs or those of their relatives being used for transplants. I am especially concerned about elderly people who, when they begin to think about matters of this kind and get near to death, find that the trauma of death becomes very much greater for them because they feel that they will become unwilling kidney donors by default. This may be an exaggeration.
§ Mr. Dalyell
It is not an exaggeration, although I say gently to my hon. Friend that the organs of those of us who are over 45 will not be of much use. We are discussing relatively young organs.
§ Mrs. Butler
I accept that, but not everyone is rational and logical like my hon. Friend and, when people are getting near to the point of death and when they have what I have described as old-fashioned perhaps misguided views about these matters, they start to worry. They will have that worry, and they will not be aware that their organs would not be of any use for transplant purposes.
At such a time, when people are worried, they should be helped in every possible way by their relatives with the resolution of their moral and personal problems. They will not be able to die easy in their minds if they are wracked by worry about what is to happen to their bodies when they die. It may not happen for very many people, but for some it will be a real difficulty. However great the need, we ought to accept that human bodies are not kidney or heart containers or container of spare parts.
The whole subject is fraught with a great deal of emotion and difficulty, as we have heard from various personal cases which have been cited. Although it is not my hon. Friend's intention, I believe that his scheme will make that emotional difficulty even greater and that it may actually increase public concern about transplants. He said that on the whole the public were happy about this from what he could understand, but if there are to be these contracting-out difficulties the public may well be less certain about the situation.
In the Adjournment debate last November, I drew attention to what I believed to be insufficiently precise wording in the present transplant guidelines which required health authoritiesto make such reasonable inquiries of the relatives as may be practicable before removal of parts of the body".While such vague guidelines remain—and the Minister replying to the debate indicated that there was no intention to change them—I believe strongly that a kidney donor card indicating the specific consent of the person concerned to his or her body being used for organ transplants is the best possible safeguard for 874 doctor and patient alike. I think that we all agree with that.
There should be no element of doubt about consent to such procedures. But, in the absence of such advance consent, the procedure of obtaining the consent of relatives should be much more precise. I refer now to the present system. I believe that we are imposing a near impossible strain on doctors when we ask them to play God in transplanting life from one human being to another and, at the same time, to exercise divine compassion in their approach to relatives for consent. The strain on doctors must be greatly relieved when the dying person is known by a donor card record to be a willing kidney donor.
I believe that the strain on doctors would become almost intolerable if my hon. Friend's suggested contracting-out system came into operation. There would be so much uncertainty, and we ought not ask them to undertake it. Therefore, I cannot agree with my hon. Friend's proposal. I agree very much with those hon. Members who have said that we ought to try to make the kidney donor scheme work very much better than it has done hitherto.
My hon. Friend has been rather too impatient. I know that it is easy to be impatient when people are suffering But the kidney donor scheme is comparatively young, and it takes time for schemes of this kind to be generally known, accepted and taken up by people. I agree entirely that we have not given nearly enough publicity to the scheme. Certainly we have not provided nearly enough outlets for kidney donor cards.
At the time of the Adjournment debate in early November, the Minister said that donor cards would be sent out shortly to all chemists' shops, and the Secretary of State said this morning that they had already been sent to chemists' shops. I called at my local chemist yesterday, and he had no kidney donor cards He had had an inquiry recently from someone who wanted to be a kidney donor, and he had written to the family practitioners' committee for a supply of cards. So it appears that the cards have not yet gone out to chemists' shops. Certainly they have not yet reached them.
I was glad to hear from my right hon. Friend this morning that a big campaign 875 is to be launched next month. I hope that cards will be in all chemists' shops by that time so that they may be taken up by people who become interested by the publicity. But very much more needs to be done. It is not enough to have supplies of cards. We need posters, leaflets and a great deal of other publicity material. This should be available in chemists' shops and in doctors' surgeries.
I do not agree with my hon. Friend that a doctor's surgery is not the right place for such cards. I think that it is. The people who go to doctors' surgeries are able to get there because they are not acutely ill. They are ill, but they are aware, because of feeling unwell, of what it must be like to be a kidney patient, and they can appreciate the need for the scheme. So I think that doctors' surgeries are appropriate places for the cards.
On the way to the House this morning, I called at my doctor's. There were kidney cards in his receptionist's office, but there was no publicity material. There were no posters and apparently no attempt was being made to promote the scheme. These types of publicity could be improved.
I agree with those who have referred to large firms taking up the question of kidney donorship. As the founder of the National Women's Cancer Control Campaign, I have found that we have had enormous support from large firms for screening programmes and publicity material. There is a big potential here for obtaining donors. We could be assured of co-operation and support from the firms involved. I hope that the Minister has taken note of that suggestion and that something will be done about it.
I welcome what the Minister said about new guidelines being issued. We need guidelines that are more clear than they are at present if the current scheme is to be made more successful.
Reference has been made to those people who wish to contract out having their names recorded in a computer at Bristol. I wonder if it is so easy to do that, why it has not been possible to record kidney donors in the same way. My hon. Friend the Member for West Lothian based part of his argument on the fact that when an accident takes place a 876 donor card is often not found on the person concerned. Surely a computer could be used. That would greatly increase the supply of donor material on a free and voluntary basis.
§ Mr. Dalyell
From what I have heard from the Minister in letters, it boils down to the cost. One has to balance the cost of a computer against the rising relative cost of dialysis.
§ Mrs. Butler
I accept that there are difficulties, but there is need for a further examination of this aspect.
A further matter which underlines the debate causes me to worry. There is a certain enthusiasm for the success of transplants as the answer to kidney disease. It is easy to be carried away. It is wonderful that we have doctors and surgeons who can carry out transplant operations. However, our resources are stretched and limited. I hope that the tenor of the debate and the urgency that has been expressed for obtaining more donors, making more transplants effective and helping more people who already suffer through kidney disease will not lead us to overlook the problem of the increasing number of kidney disease cases. I hope that we shall concentrate more on the causes of this disease.
I understand that the substance phenacetin was widely used in a number of powerful drugs. It was considered harmless until its connection with kidney damage was discovered and it was withdrawn except on prescription. Many powerful drugs are in use which, in the long term, might be dangerous to people with susceptible kidneys. There must be many factors in modern life which cause people to suffer from renal failure. I hope that resources will be allocated to discover what these causes are so that we can remove the need for transplants. It is dangerous to accept that we must have more and more transplants to cope with more and more renal failures. That would be a policy of long-term despair. I hope that we put some emphasis on getting to the causes of the trouble.
§ 1.15 p.m.
§ Mr. Jack Ashley (Stoke-on-Trent, South)
It is traditional to pay a formal tribute to the mover of a motion, but today my tribute is genuine and enthusiastic because on this important occasion 877 the motion moved by my hon. Friend the Member for West Lothian (Mr. Dalyell) is literally a matter of life or death. As chairman of the all-party Disablement Group, I am interested in the problem of kidney transplants, partly because of the efforts of my hon. Friend the Member for West Lothian. The Government are also interested primarily because of my hon. Friend's efforts. My hon. Friend has been ploughing a lonely furrow for many years. He is now being aided by various hon. Members who have spoken in the debate.
I was glad to hear my very good and hon. Friend the Member for Liverpool, West Derby (Mr. Ogden) speak of his efforts 10 years ago, and although he was on the wrong side then he was interested in the problem. My hon. Friend the Member for Wood Green (Mrs. Butler) also has a deep interest in this subject. But the pioneer has been my hon. Friend the Member for West Lothian. Some of us are determined that he will win in the end. Somehow we have to find a solution to this great tragedy. That will not happen by fiddling around with the problem.
Some hon. Members regard this type of question as mere welfare work. They think of tackling problems of disabled people as welfare work. They are more concerned with political theories and whether to nationalise this or denationalise that. They claim they are involved with great national and international issues, but because this problem is a matter of life or death it is important and one of the major issues with which we should deal regularly in the House.
I propose to criticise the Government, but I must add that the Secretary of State has been extremely helpful on all the occasions when he has dealt with this problem and whenever he has discussed it with the all-party group. A deputation from the group recently went to see my right hon. Friend the Secretary of State at the Elephant and Castle. He was extremely helpful. He said that the Department intended to publish a discussion document setting out the reasons for and against amending the present legislation. He also said that he intended to launch a campaign to alert the public to the importance of kidney transplantation.
878 After that meeting my right hon. Friend changed his mind. He wrote to tell me that having considered the mechanics of launching such a publicity campaign he had decided that it would cause confusion to run a campaign to encourage the public to opt in under existing legislation whilst at the same time issuing a discussion document about the possibility of opting out. He therefore decided to postpone the publication of the discussion document until later this year. He was right to do that because misunderstanding might have been caused.
However, I want to make it absolutely clear that the Government are wrong simply to issue a discussion document. As my hon. Friend the Member for West Derby said, we have been discussing this matter for a decade. During that decade people have been dying. How much more discussion do we need to prevent unnecessary deaths? For goodness sake, what do the bereaved families think of discussions in this House when they go to funerals and see their loved ones being buried? We have had enough discussions. It is quite wrong for the Secretary of State to say that he will produce discussion documents because then there will be more discussion by the public and by interested parties as well as in the House. In the meantime, people will die because there is a lack of kidneys. How crazy can we get?
We must have action. We pride ourselves on being a leading civilised society. But, across the Channel, France has acted and has legislated. On the first day of this year French legislation became operative. My right hon. Friend said that he intends to see what reaction there is to it. But how splendid that the French should legislate first and then see what the reaction is. I have no doubt that if there is a further revolution in France about that kind of legislation the French may change their minds. That is fine. But why cannot we legislate and then see whether there is an outraged public reaction and revolution and, if necessary, then change our minds? The case has been made out for action and I suggest that we should take it.
My right hon. Friend has referred to a survey in Manchester which indicated that the majority of people—80 per cent.—were against opting out. But that is one 879 survey. The survey by the British Kidney Patients Association, which has done such valuable work on this issue—and the survey was conducted by Gallup—found that 57 per cent. of people were in favour of contracting out. The surveys, therefore, conflict and we should be on our guard against being unduly influenced by surveys of one kind or another.
There is far too much concentration on statistics. We can argue until we are black in the face about whether there are adequate numbers of machines, whether there are enough people on machines, whether there is enough home dialysis and hospital dialysis. But the vital point is that people are dying through lack of kidneys when they should not be. These unnecessary deaths are absolutely unjustifiable and should not be tolerated for a moment.
The remarkable thing about our society is that when one person is in danger of dying and that case is highlighted, all the resources of our society are devoted to it. If one person goes mountain climbing and falls down a crevasse, or if an individual is caught in a pothole or is lost on the moors, helicopters are called out for the search the Army is called in and the police are mobilised. There are thousands of volunteers. All these resources go to saving one life, and rightly so. Those efforts are magnificent and commendable. But why cannot we mobilise public concern on that scale about the hundreds and thousands of kidney deaths that regularly occur? People are dying not because medical science is unable to save them but because society is unable to mobilise a supply of kidneys.
I do not think that we should be preoccupied with the statistics, although I have a file full of them. It does not matter whether the numbers are 100,000, 10,000 or one, because numbers do not affect the principle of the argument. The essential point is that we are condemning people to unnecessary death. That is the crucial issue in this debate. Nothing must allow us to be diverted from that vital principle.
Apart from families and friends who donate kidneys while they are alive, the main source of kidneys is people who have died. We have to look at that supply and have regard to society's attitude. Society can be divided into three specific 880 groups. The first are those, some of whom have spoken in the debate today, who passionately believe that unnecessary death must be avoided at all costs. They are willing to donate their own kidneys if necessary and certainly to back the opting-out principle.
The second group contains those who are equally passionately opposed to it who believe in the sanctity of the human body and say that it should not be tampered with in any way, sometimes in life, but certainly after death. They would be willing to accept unnecessary deaths because they do not want bodies to be tampered with. We have to respect that attitude, although I profoundly disagree with it.
The third category is the overwhelming majority of people who are simply indifferent to the problem. They have not thought about it and they are not bothered one way or the other. We must recognise, however, that the present opting-out system is undoubtedly a failure. The fact that all these people are dying is adequate proof and eloquent testimony to that undeniable fact.
The system simply must be changed. The Government are well meaning, and the Secretary of State and his Ministers and civil servants are trying very hard. They have many new ideas. But the new schemes will always fail because the minority who will be donors—because they are concerned—will always be in a minority. It is impossible to sustain a campaign by any Government to persuade sufficient people.
What measures are to be used? They were mentioned by my hon. Friend the Member for Wood Green. They include distributing cards to post offices and chemists' shops, and using doctors, driving licences and the rest. All this will still fail. I do not think that any effort will affect the situation.
The Government's efforts are no doubt correct, but they will have no lasting effect on the vast majority because the simple fact is that the majority in this country are preoccupied with the problems of their daily lives, not with the tragedy of kidney patients. They are preoccupied with their jobs and their taxes, with love or hate, with football or even the weather. The figures of kidney deaths are just one more statistic of tragedy in the daily newspaper. They are not really concerned 881 about them—they want to get on with life.
How can the opting-out system affect the situation? How would it affect my three categories? It certainly will not affect the first category, because these people are already willing to donate their kidneys and are enthusiastically backing the opting-out system. It will not affect the second group—those who object in principle—because they will not be moved and are not prepared to help with kidney transplants because they do not want the human body, alive or dead, to be tampered with. But it will affect the majority who are indifferent.
There can be no valid objection to the proposed scheme. Some people might be ignorant of it because of their preoccupation with other things, and it would be wrong for kidneys to be removed from those people. To protect them, the new opting-out scheme must be publicised and there must be plenty of opting-out cards.
If there is too little publicity and too few cards after the scheme has been adopted, it will be indefensible to take kidneys from those who were ignorant of the opting-out provision. We must take the greatest care to ensure the fullest publicity. But then there could be no objection because this minority would be protected.
Therefore, I believe that the hon. Member for Exeter (Mr. Hannam), who does so much to help the disabled, is wrong to suggest that there would be a limitation on freedom. Those who objected would be able to opt out. The people whose freedom we should be considering are those who need kidneys and who, without this scheme, will be deprived of all freedoms, including the freedom to live. They should come first.
The Secretary of State has objected to the proposal, first, because he says that a new campaign is being launched to publicise the donor cards. But, as my hon. Friend the Member for West Derby said, that scheme has failed in the past and there is no reason why it should succeed in future. This new publicity campaign is being launched now only through the initiative of hon. Members. I am not criticising the Government—I am commending them—but they cannot 882 achieve success just with a publicity campaign.
My right hon. Friend also said that doctors would be given better information. That is fine, but it will make no substantial difference. Doctors are far too harassed to deal with this problem in any substantial way. Thus, although the improved system is welcome, it will have only a slight effect.
There is no ground for the Secretary of State's claim that public opinion is not yet ready. Public opinion has not been decided. We cannot quote polls selectively. My right hon. Friend could speak of public opinion only if he brought forward a Bill to introduce this scheme and public opinion was overwhelmingly against it—but the evidence would have to be conclusive. That is the only honourable and reasonable course for the Government to take.
My hon. Friend the Member for Wood Green spoke of relying on generosity of spirit. I am all in favour of generosity of spirit. But if she believes that that will solve this problem, she believes in Santa Claus, because it has not done so over the last 10 years. People are still dying unnecessarily, despite generosity of spirit.
Successive Governments have tinkered long enough with this tragedy. It is lack of political will that has led to the failure to do something positive. It is wrong for the Government and the House to shuffle while people are dying. The objections are flimsy and insubstantial and must be overridden. It is a national scandal that people are going to the grave, being denied life, while we piffle around with little schemes to chop and change, when we should be making a bold and radical alteration to the existing scheme.
I hope that this well-meaning Government, who have tried harder than any of their predecessors, will take decisive action to end the suffering and the unnecessary deaths caused by lack of kidney transplants.
§ 1.39 p.m.
§ Sir George Young (Ealing, Acton)
I have sat through the entire debate, except for one or two occasions when my kidneys required me to leave.
It has been a serious debate. What has shone through it is the deep personal 883 commitment and interest of all those on both sides of the House who have taken part. I understand why the Secretary of State is unable to be present at the end of the debate. We were very fortunate to have him here at the beginning.
The House is indebted to the hon. Member for West Lothian (Mr. Dalyell) for the opportunity of debating the problems of those suffering from renal failure and of putting forward some positive solutions. He made his case rationally and forcefully. I wholly agree with the hon. Gentleman that a new look at the subject is now needed.
I begin by making a general comment on the hon. Gentleman's approach. This follows up something that was said by the hon. Member for Wood Green (Mrs. Butler). Although the hon. Gentleman has entitled his motion "Kidney Donors", his proposed amendment to the Human Tissue Act would cover the removal of all organs—heart, lungs, liver, pancreas, eardrums, the lot. In adopting this approach, he may be making it more difficult to help kidney patients. Public resistance to the notion of one's organs being removed after death is higher in the case of some organs than others.
Heart transplants or brain transplants, which the hon. Gentleman mentioned, provoke totally different reactions among the public from their reactions to kidney transplants. None of us would know that we had any kidneys if our doctors had not told us. Although these are emotional matters, public resistance to the notion of transplants is much higher for some organs than for others. One should tackle kidneys separately if that is one's priority.
§ Mr. Dalyell
I said that there was no question of brain transplants. That is physically impossible. Clearly, what one might describe as the personal organs will not be transplanted. Equally, I agree in general terms with what the hon. Gentleman said about hearts. If there is a mistake here, it is in drafting and it was not intended.
§ Sir G. Young
All that I was saying was that the proposed amendment covered all organs.
There is a further difference. Transplantation of kidneys is now a successful 884 operation, and many people are alive today to prove it. Heart or eye transplants are considerably more dangerous. Additionally, with hearts there is not the same problem of a long queue of patients awaiting transplants. Eye transplants are not a matter of life or death.
Although there is logic in what the hon. Gentleman seeks to do, when it comes to persuading people outside to contract in or out, or persuading Parliament to change the law, I think it better that kidneys should be dealt with separately.
I turn to the specific problem of kidney patients. Looking at it objectively, I find it impossible not to feel indignant at the unnecessary waste of human life and the unnecessary suffering caused. The reason is very simple. There are 1,123 kidney patients awaiting transplants, using dialysis facilities which are in short supply and forcing the medical profession to make hideous decisions about who shall live and who shall die. Each month about 60 kidneys become available for transplant, and doctors must choose who among the 1,100 patients shall have them.
On the other hand, each year about 59,000 people between the ages of 20 and 54 die in the United Kingdom and have no further use for their kidneys. Over 18,000 died in accidents in 1976. Most were in hospital at the time of death or arrived there shortly after.
The following question poses itself to the House. Why is it not possible to use the kidneys of 2.5 per cent. of the 59,000 people who have died or 8.3 per per cent. of the 18,000 people who have died in order to help others to live? The hon. Gentleman asked "Is it beyond the ingenuity and intelligence of a civilised society to find a way of bridging the gap between the 670 or so kidneys made available each year and the 1,500-odd that might be needed?"
If we are to solve the problem, we must identify the areas of resistance and see where we can most usefully make progress. There are three areas of resistance—the Government, the medical profession and the British public.
I deal first with the Government. To judge from the tone of the hon. Gentleman's motion and his speech, he believes that the right way to tackle the problem is through legislation. I believe that he 885 is right to say that amendment of the Human Tissue Act along the lines he proposes would solve the problem. However, I am not convinced that it is the only solution or, indeed, the best, or even that if we did that we would overcome some of the other barriers.
The real charge against the Government is not that they have not legislated but that they have failed to use their influence as employers, for example, to encourage those who work for them to carry donor cards. They have failed on the publicity side and in the matter of driving licences, a point made by my hon. Friend the Member for Altrincham and Sale (Mr. Montgomery) and the hon. Member for Brent, South (Mr. Pavitt).
In Australia, the driving licence contains a form for people to sign to show that their kidneys are available. The Government have been less than frank with the House in dealing with this matter. On 14th July 1976, the Department of the Environment turned down the proposal that I have just outlined for the following reason:Drivers are not obliged to carry driving licences with them, and many people who travel on the roads do not hold driving licences."—[Official Report, 14th July 1976; Vol. 915, c. 203.]There was no mention of practical problems or cost. We simply had that rather wet reply to a Question.
Three months later, a similar Question was put to the Department of Health and Social Security. The Minister of State replied:Although sympathetic to the aims of the proposals, we have reluctantly concluded that practical difficulties would prevent us from approaching existing licence holders … except at disproportionate expense."—[Official Report, 26th October 1976; Vol. 918, c. 117.]Those were totally different reasons, which did not relate to the reason given earlier.
Another example concerns a suggestion made by my hon. Friend the Member for Wallasey (Mrs. Chalker) that electoral registration officers should enclose kidney donor cards when they send out the forms to complete the electoral register. She received the following reply from the Minister of State, Home Office, on 14th December: 886This would be a matter for each electoral registration officer to consider."—[Official Report, 14th December 1977; Vol. 941, c. 240.]Indeed it would, but the Government should have taken an initiative and said that it was an imaginative proposal which they would discuss with those concerned. I give those examples as reasons for saying that to my mind the Government have not done as much as they might.
Another charge made against the Government, which was touched on by the hon. Members for West Lothian and for Brent, South, is that the Government's failure to define death has inhibited organ transplants. The matter of definition of death is a problem and will remain a problem, whether we have contracting in or contracting out.
It is a complicated issue, made more difficult by aids to breathing and circulation. Here I wish to quote from a letter on the subject that I received from the British Medical Association. The letter, dated 24th February this year, said:The report which appeared in the medico-legal section of the BMJ in 1975 referred to definitive advice on a stage at which death takes place which was awaited from the DHSS Transplant Advisory Panel. This has not yet been issued and is still under consideration within the Department.Three years seems to me rather a long time to take to define death. Perhaps the Transplant Advisory Panel has itself passed on, but as it had not completed its task no one within the DHSS can pronounce it extinct.
Way back in 1975, people were pointing out that the uncertainty as to when someone dies was hindering transplantation. For example, the British Medical Journal said on 12th July 1975:The Department skirts round the issue central to all transplantation: the stage at which death takes place.Although the DHSS has now approved the recommendations of the Conference of Medical Royal Colleges and Faculties, there is still no statutory definition of death such as exists in other countries. Doctors face possible legal action if they are suspected of being too quick on the draw.
We could have a definition based on irreversible cessation of the functions of the brain and circulation of the blood, supplemented in cases where respiration and circulation have been kept going artificially by extra procedures.
887 A further problem, touched on by the hon. Member for Wood Green, is the Government's circular on the Act, dated June 1975. It was doubtless intended to help, but it leaves much unclear. Paragraph 10 says:The Secretary of State wishes to emphasise that non-compliance with provisions of the Act could lead to proceedings in the courts in respect of possible offences.But other paragraphs do not make clear what is an offence. Phrases such as:having made such reasonable inquiry as may be practicablemight mean different things to the doctor and a relative. Paragraph 13 contains the words:Where there is reason to believe that the coroner may require an inquest.That phrase may mean different things to a coroner and a doctor. Therefore, there is much that the Government can do within existing legal framework to improve the situation.
§ Mr. Ogden
Does the hon. Gentleman accept that the advice that the Government have been offered by the legal profession on all the circumstances that he is raising is deeply divided? It seems that these definitions are coming up only by accident, by case law, rather than by a consensus on which the Government could take action.
§ Sir G. Young
I accept the criticisms of the hon. Gentleman. I shall be coming in a minute to the question of the legal profession. Other countries have overcome these problems, particularly the definition of death. A dead person in England, I suppose, is much the same as a dead person in Australia or somewhere else, and we should use these definitions. The Secretary of State earlier conceded that not enough was being done by his Department. The experience of the chemists' shops indicates that somehow the system is not quite working.
The second area of resistance is the medical profession itself, which is apathetic in far too many cases. This apathy would be a handicap with the contracting-in system or the contracting-out system. If one overcame this apathy, we should not need to change the law. The real problem for the surgeons in charge of the kidney patients is to persuade other surgeons in charge of the intensive care units to call them in on appropriate occasions. This is a matter of better 888 communications within and between hospitals and more effective liaison.
My hon. Friend the Member for Exeter (Mr. Hannam) mentioned that there were honourable exceptions to this general criticism. I am sure that this is the case. The point is well made by Sir Henry Yellowlees in his letter to hospital doctors of 18th June 1975:I am convinced that co-operation between clinicians is the key to solving the problem of the shortage of kidneys.This is supported by an article in The Times on 31st January 1975, which says:The Society"—that is, the British Transplantation Society—claims that the most important cause or the shortage is doctors' apathy.That is a problem that one would have to overcome with contracting in or contracting out.
The hon. Member for West Lothian slightly undermined his case by indicating that in some regions the problem had been overcome by keenness and enthusiasm in the staff. I think that it is better to look at extending good practice throughout the regions than trying to change the law.
Doctors seem very willing to act when their patient is a potential recipient of a kidney because it is their patient who is ill. They seem far less willing to act when their patient is a potential donor, because he has died. This is an illogical position for the medical profession to be in, because there is a recipient only when there is a donor, and equal initiative is required in both cases.
Within the medical profession I think that the coroners could be more helpful and co-operative. The British Medical Journal of 12th July 1975, following the circular that had gone out, said.In some parts of the country difficulties have arisen with coroners over the Act's interpretation.So there is considerable evidence within the broad framework of contracting in. Many more donors could be made available if the medical profession acted more enthusiastically and co-ordinated its efforts more clearly.
§ Mr. Dalyell
It is, of course, true that Mr. Durell, who is the Cambridge coroner, took a very tough view, and Mr. Gavin Thurston, the Inner West London 889 coroner, took a very different view. But would it not be easier if the coroners themselves were clearer about what Parliament considered to be the law? In a sense, the buck rests not so much with the coroners as with us in the House.
§ Sir G. Young
It was the Cambridge coroner whom I had in mind and whom the BMJ had in mind when it made that criticism. If it is a problem of tidying up the law, it goes back to what I said earlier and what the Secretary of State was implying when he said that he was considering issuing further guidelines probably on the Human Tissue Act. Coroners would be well advised to make it clear to the Secretary of State that they would welcome slightly clearer advice if new guidelines are on the way.
Another area of resistance is the British public. The criticism is simply that we all know that once we die our kidneys are of no use to us. Many of us know—I hope more of us will know after this debate—that they might be of use to someone else. In spite of these indisputable facts, only about 5 per cent. of us appear to carry kidney donor cards on our bodies. I hasten to add that I carry one. Both I and the Conservative Association of Ealing, Acton hope that the offer that is made will not be taken up just yet.
The basic willingness of the community to co-operate has not yet remotely approached its full potential. That is where I disagree with the hon. Member for West Lothian. The BMJ of 13th March 1976 concluded as follows:There was no evidence of any widespread objection to the procedures involved in obtaining cadaver kidneys, but there was strong objection to the introduction by law of an opting-out system.I think that 65.2 per cent. were opposed to a change in the law. So the conclusion from that is, whatever value one places on it, not that we should change the law but that we should capitalise on the basis of the willingness of people to help.
It is not just a question of people wanting to help, but a question of making it possible for them to help by making the cards more generally available. I wonder how many Members of Parliament carry cards. My hon. Friend the Member for Exeter gave me a supply of 12 the day before yesterday that I disposed of with no great difficulty. Although 890 it was announced on the all-party Whip last week, I am not sure how many Members are acting on it. I propose to make them available at my advice bureau in my constituency. Perhaps other hon. Members will follow suit. I hope that other hon. Members will follow suit, for we can do much to give a lead on this.
I disagree with another thing said by the hon. Member for West Lothian. He said that, because we all believe that it will not happen to us and that we will not be killed at a relatively young age, we refuse to carry the cards. If that were so, people of my age and his age would not make any wills and would not insure their lives. The evidence is that we do those things. If we had a basic reluctance to face up to the possibility of death there would not be a large volume of wills and life insurance amongst the people of the age groups that he is talking about.
§ Mr. Dalyell
Is that a very good analogy? Most of us have families, children. Making a will or taking out insurance is far less anonymous than donating one's organs to someone who might be anonymous. Every time the hon. Gentleman starts out on his bicycle, I bet he thinks that an accident could happen to him some time but not today. Every time he leaves to go out on his bicycle, can we be sure that he carries his kidney card with him?
§ Sir G. Young
I carry it in my wallet, as I suspect other hon. Members do. So where I go, my card goes with me. The hon. Gentleman has put forward a different point. He said in his speech that many of us believed that it would happen to us. That is not the case. People take other precautions—I listed two of them—which acknowledge the possibility of death prematurely.
What does one conclude from the brief survey that I made of the obstacles in the way of recipient and donor? The law is not the only problem. There are other obstacles. Some of those other obstacles would still have to be removed even if the law were changed. Some other obstacles may be easier to remove than the law and could bring forward the relatively small number of extra kidneys that we need.
Those are not my conclusions alone. What is much more important, they are in line with British Kidney Patients' 891 Association, an active and influential group spearheaded by Mrs. Ward, whom many hon. Members have rightly complimented on her energy and enthusiasm and who has been of enormous assistance to me in preparing for this debate. A booklet entitled "Medical Transplantation and the Law", issued by the BKPA says:The experience of countries with similar Acts (to the Human Tissue Act) suggests that the Human Tissue Act should not be considered a major cause of the current shortage of organs in this country.When the members of the all-party group met representatives of the BKPA last November, they were asked by my hon. Friend the Member for Braintree (Mr. Newton) whether they preferred a voluntary system. They confirmed that this was the case. It is in the minutes which we all received of that meeting.
If the BKPA, acting on behalf of kidney patients, does not believe that the law is a major problem, we should take heed of its views. If the public are against a contracting-out system and if the Government and Members from both parties have refused to change the law, it seems sensible to me to pursue other solutions. This is reinforced by The Sunday Times in an article which appeared on 15th September 1974.
§ Sir G. Young
It may be Oliver Gillie. The article appeared in The Sunday Times on 15th September 1974 and reads:Such a scheme is likely to provoke bitter opposition and has never had public support Experience has now shown that it is probably not necessary. If doctors would adopt a voluntary transplant code, enforced by the ultimate sanction of the GMC, there would be no need for any change in the law.Where I agree with the hon. Gentleman is on the need to get a decision on whether a kidney when donated is taken away at the time of death. This is an argument, as he will concede, for contracting in or for contracting out. This was mentioned also by my hon. Friend the Member for Altrincham and Sale.
I do not believe that it is right to expect the doctor in charge of someone who has died to approach a close relative and ask for permission to make a transplant. Many of us have had to break the news to someone of the death of a 892 close relative. It is an unpleasant task and it is made infinitely harder if questions which inevitably seem insensitive are subsequently asked about transplantation. Nor is it right to expect a relative at a very emotional time to take a rational decision. Too much of the emphasis in the legislation and the circular is based on the need to secure consent after death. We must shift the whole emphasis.
That means more contracting in. We need a major Government campaign, supported by the private sector, to get more people to carry cards. I do not see why the credit cards which many of us cannot do without could not have a space on the hack enabling us to opt in. The same could be done with Automobile Association and Royal Automobile Club cards. Electoral registration officers could put kidney donor cards through the letter boxes with the forms that are sent out in October.
I am still not convinced that the driving licence idea is not practicable. I am delighted to see the Under-Secretary of State for Transport here to take that criticism on board. The question of having the cards available in post offices has been mentioned. We must make a major effort to get more people to carry the cards and to sign them. I am sure that availability is the key to success.
I spoke to a hospital administrator in my constituency about this matter and learned that he is prepared to have an experiment in his hospital requiring people to sign a form on admission indicating whether they are prepared to donate their kidneys. The hon. Member for West Lothian objects to this, but we should take up the offer as an experiment and test public reaction.
§ Sir G. Young
No. The form would permit of the answer "Yes" or "No" to the question "Do you wish to be a kidney donor?" If it were made clear that all people had to fill in a form on admission, whatever their prospects were of leaving the hospital, I do not see that public resistance would be very great.
§ Sir G. Young
This would be another way of getting more people to carry kidney donor cards. I was delighted to hear the Secretary of State say that he is to undertake a major campaign shortly aimed at increasing the take-up of cards.
I come to the question of costs. We are at a disadvantage because we do not know what the cost of the computer operation at Bristol might be. Contracting in is virtually free. It appears that contracting out might cost something. We cannot envisage from which section of the budget of the Department of Health and Social Security the money for running a contracting-out scheme would come.
There are some problems which I do not think the House has faced up to. If the Government were to accept the motion, we would not get legislation this Session, though we might get it next Session. We must get legislation through the House to give people time to contract out. We are talking of a time scale of, perhaps, two years before any scheme could start. What would happen in the meantime? What would happen to any campaign to persuade people to proceed with contracting in if it was known that it would be compulsory in a few years time?
The position might be made much worse for people in the meantime if we went down this road. I am anxious that the hon. Member for West Lothian should not think that I am unsympathetic or that I am adopting a negative approach. He may know that before I tabled the motion I introduced a Bill under the Ten Minutes Rule to extend the attendance allowance to kidney patients, so I am not without sympathy. Where I disagree with the hon. Gentleman is on his unsympathetic approach to the potential of the voluntary scheme. I think that the potential has not been tapped. Roughly half of those who have spoken in this debate took the same view. We shall have solved the problem successfully if there has been a great improvement in take-up by the end of 1979.
The hon. Gentleman and I have the same objective, and I hope that we reach it quickly. I believe that we shall reach 894 it more quickly by going slightly faster down the existing road than by changing stream and going down a different one.
§ 2.5 p.m.
§ Mr. Dalyell
I wish to exercise my right of reply. I do not know whether a Minister is coming to the debate again or not.
My hon. Friend the Member for Stoke-on-Trent, South (Mr. Ashley), in a passage which I hope that the Secretary of State and the Department will examine, said "There has been enough discussion. People are dying." That is why I am pessimistic as I must tell the hon. Member for Ealing, Acton (Sir G. Young). It is not as if some of us have been at it for just one or two years. It is 15 long years.
It may be said that there will be a sudden spurt of activity following a sudden spurt such as this debate, a working party, a discussion group, and so on. However, the publicity will subside as soon as the immediate effect of the debate, the working party, the special publicity campaign, has in some way chugged out. Unless there is to be constant publicity, ceaselessly sustained, real problems will arise. So if there is to be a working party I hope that the Secretary of State will consider not only my hon. Friends the Members for Wood Green (Mrs. Butler) and Liverpool, West Derby (Mr. Ogden) but my hon. Friend the Member for Stoke-on-Trent, South and indeed, if I may be immodest, myself as candidates for that working party.
Part of the difficulty is summed up in a letter I received dated 16th November from the Under-Secretary of State for Scotland in which he says:It will clearly take some time for these measures to produce significant results and as I have indicated above we do not think the time is yet ripe to make an assessment of the campaign. Nevertheless, it is our intention to do so, possibly in mid-1978 after the measures proposed have had time to make some impact. We are hopeful that they will help to stimulate the awareness of the general public in this matter and lead to an effective response.I give notice that on 1st July 1978, or whatever the next day for Questions may be to the Scottish Office or the DHSS or, indeed, the Welsh Office, I shall table Questions asking what the effect has been. So I hope that it is understood that we 895 shall take the Department and the Government at their word and that in the middle of 1978 we shall see exactly what has happened.
I come to a fundamental point. There are a few who complain at the costs involved in the search for and rescue of shipwrecked sailors. Planes and helicopters are used routinely. Why then, should not a similar effort be made for those in an equally desperate plight when suffering from a fatal disease involving a transplantable organ?
The principles of a transplantation service are similar to those of a blood transfusion service and could be planned on comparable lines. We should consider with more compassion the many young people, with useful lives, who are being allowed to die due to the shortage of organs for transplantation. Most of us would make every endeavour to save a man from drowning. Many would risk life and limb in the attempt. To donate one's organs after death is a similar act of charity that involves no risk at all, yet can provide another human being with the gift of life. I therefore take up what my hon. Friend the Member for Stoke-on-Trent, South said in his powerful and memorable speech.
I come now to the arguments of my hon. Friend the Member for Wood Green. I repeat that it would be foolish and ignorant of me to brush them aside. There are balances in all this, but I put it to her that not only do we need a given number—1,200 or 1,500—but that in fact we need very many more organs because of tissue typing. Professor Roy Calne writes:Nevertheless the closer the match the better the chances of a successful graft and a good match means that graft rejection can be prevented with small safe doses of immunosuppressive agents. It is not impossible that the greatest value of tissue typing will eventually be its application to the production of specific immunological tolerance".In order to provide that kind of help there must be more organs available—the more the better, because there are then greater chances of accurate tissue typing.
There has been some discussion about the wishes of people. I should like to read two letters which have been written to Professor Calne. The first, dated 12th September, states:Dear Professor Calne, I am in England on a short visit from Kenya and my attention has 896 been drawn to the argument over your vital work with kidney transplants. May I say that when my twin brother was killed last year in a road accident and you were able to use his kidneys, it was a very great comfort, indeed the only real comfort to my mother aged 78 in her distress at the loss of her only son. Herself an invalid for 20 years from kidney disease, it gave some point in what seemed the pointless death of a healthy young man in the prime of life. I too was very glad and hope that legislation will be effected that only those who do not wish to have full use made of their vital organs after their deaths will carry an identity tag to this effect, and it will then be general practice to salvage from the tragedies of accidental death without distressing family and relatives by seeking permission for this, when they are in no emotional state to take the decision of consent".The second letter to Professor Calne begins with a reference to an article in The Observer by Polly Toynbee of 11th September 1977. The letter reads:Reading today's Observer article about the shortage of kidney donors has prompted me to write to you. In June last year our son David, a student at Keele University, was killed in a road accident near there. We were called to the hospital in the middle of the night, to find that he had died half an hour before our arrival. The shock totally put out of my mind the fact that David had discussed with me only a month or so earlier his intention of obtaining a kidney donor card. In fact, this card was not on him when he was killed; we found it two days later in his university room, when it was too late to do anything. I appreciate that hospital staff may feel they do not wish to add to the relatives' grief by mentioning donations of body organs at such a time and perhaps David's body was too badly damaged anyway, but if only someone had mentioned it, my husband and I would (a) have remembered the conversation with David about his wishes, and (b) gladly have given permission for any organs from his body to be used".The writer goes on to say:I have been tormented for over a year by the fact that had we remembered we, and David, might have helped to save someone else's life. Several times I have been on the point of writing to the hospital (the North Staffs Royal Infirmary), but I did not want the staff to feel that any criticism was implied. I should simply like to be involved in any scheme to publicise the need for human organs, and most of all to ensure that, through some improvement in communication, organs which are available are not wasted.Concerning public opinion, there are two sides of the coin. I am sorry that the Minister is not here, because a direct question was asked of the Department. How is it that there are these differences from place to place? At one level, I concede that it might have seemed a little contrary to my argument for me to have said that there are some places 897 —very few, incidentally—which produce more than their share of organs in terms of need. I do not think that we can look forward to the day when in every hospital in every place in the country mere will be people who are absolutely dedicated and keen to provide such organs, and therefore, on balance I think that there are real difficulties in suggesting that a time will come when every place will provide the same number of organs as the most dedicated areas provide at present. I think that that would be hoping for a world that will not exist.
My hon. Friend the Member for Wood Green spoke about religious feeling. Without wanting to be personal about it, I refer to the fact that I have had very deep conversations with our late lamented colleague Brian O'Malley, who was the Member for Rotherham and at that time a Minister of State in the Department of Health and Social Security. It is quite clear that there is no objection from the Roman Catholic Church.
A questionnaire was done by the United Liverpool Hospitals. Robert Sells, who is the director of the renal transplant unit, was involved in it. My hon. Friend the Member for West Derby probably knows him. He writes:As I think you know, I and my associates in Liverpool feel that a 'double contract' is preferably to an 'opting out' Bill. I do hope that if the 'opting out' scheme is rejected in the House, this will not prove detrimental to subsequent attempts to produce a 'double contract ' using a computerised register.Sells takes a rather different view from mine. As a result of the questionnaire, he found that 93 per cent. were in favour of the general principle of transplantation, 84 per cent. were willing to give kidneys for transplantation after death, and 84 per cent. were willing to make a statement during their lifetime for or against the donation of kidneys.
If those are the figures—and this is a man who does not entirely share my views—a lot of good organs are being lost. There are gaps in organisation somewhere. Surely the needs of all those on the waiting list could be satisfied if we were more efficient.
I therefore come back to the argument about efficiency and how the job can best be done. I have a letter from Dr. 898 D. J. Oborne, lecturer in psychology at the University of Wales. A study has been done in his department, and the information sent to me states:Although 44 per cent. (83 respondents) had heard of the kidney transplant donor scheme, only 21 per cent. indicated that they knew how to arrange for their kidneys to be donated. Furthermore, of the 83 respondents who had heard of the scheme, only 29 knew how to obtain the card. This discrepancy, coupled with the fact that over 50 per cent. of the respondents had not heard of the donor card scheme, perhaps indicates the lack of knowledge and understanding of the scheme.All this was done fairly recently. What I cannot accept is the idea that publicity efforts have not been made. I do not think that many Ministers in the Department of Health and Social Security will confess that efforts were not made during their time in office. My impression is that successive Ministers have tried hard for a long time and have stretched the publicity angle as far as they could. I am sorry that there is to be no reply, but I am very grateful to my right hon. Friend the Secretary of State, who told me at an early stage that he would have to leave.
In November 1977, according to David Loshak, health services correspondent of The Daily Telegraph, there were five health authorities refusing to accept a Government offer of kidney machines for seriously ill children because of the running costs, which were £64,000 for each authority. His report states:The Government offer followed an admission by Mr. Moyle, Health Minister, that thousands of patients suffering from kidney failure cannot get dialysis traeatment.I should like to know what is the Department's view of the numbers involved. Is it thousands? Like my hon. Friend the Member for West Derby, I suspect that the figures are very distorted, because many people think that the position is hopeless anyhow and are not registered. Indeed, I suspect that the figures may be exceedingly misleading.
In relation to what was said about death, I should like next to refer to a paper at which I hope the working party will look very carefully. It is a memorandum for the sub-committee of the British Transplantation Society by Professor Bryan Jennett, a neurologist in Glasgow. It is entitledIrrecoverable brain damage, brain death and organ donation".899 I am very grateful to him for having talked to me about these questions. He says:Experience in Scotland suggests that this approach to the problem is practical and effective. Two or three years ago the Scottish Home and Health Department appointed a recently retired Professor of Anaesthesia to act as co-ordinator of renal transplantation. One of his tasks was to circulate around possible donor units to discover the reasons why more donors were not being offered. In practice one of his main contributions has been to spread information about brain death, and to increase doctors' confidence about it. He reports that this has resulted in a considerable change in attitude and that small numbers of donors are now beginning to come from hospitals which previously never contributed at all. Moreover, these hospitals have accepted the need to recognise brain death without calling for laboratory investigations, and usually without need for consultation from a neurologist or neurosurgeon.This is a very important matter in relation to the contribution of my hon. Friend the Member for Wood Green in an Adjournment debate that she initiated in November. She spoke then of her legitimate worries about a constituent who thought that she was being pressurised by the hospital into giving the kidneys of her son. I think that part of the answer to this is that a great deal of care must be taken about the definition of clinical death. Many of those who are in favour of the contracting-out scheme have said to me "You will make sure that I am dead on the slab, won't you?" It is very important that clinical death should be established by two doctors neither of whom is the renal transplant surgeon.
I refer to another document that I hope the working party will consider. The British Transplantation Society, of which Professor Brent is the general secretary, says in a memorandum entitled "The Shortage of Organs for Clinical Transplantation":It was concluded that the shortage was very serious and that it could be completely overcome if even a small proportion of potential cases were used thus some 6,000 fatal road accidents occurred a year. Added to this would be suitable donor organs from patients with subarachnoid haemorrhage and cerebral tumours. … The poor quality of kidneys transplanted in the U.K. was well known on the Continent and although sharing of kidneys occurred between different countries many continental transplantation centres refused to accept kidneys from the U.K. because of the relatively high proportion of organs that were damaged by ischaemia.900 This raises issues that have been mentioned by some of my hon. Friends. Unless we can be clear about what is reasonable in relation to conduct, we shall still have a great deal of this kind of trouble.
The point is also made by Robert Jones a medical journalist, who says:The existence of a card does not guarantee that kidneys will be removed at death, especially if the card is not readily apparent among the donor's immediate possessions, but it strengthens the case for transplantation.I wonder how many people look at death and then feel that they can search the corpse for a kidney card, especially if the body is slightly mangled.
On the issue of law, I hope that the working party will look at the Cambridge Law Journal article entitled "Irreversibly Comatose Individuals: 'Alive' or 'Dead'." P. D. G. Skegg says:What is important is that, once it is established that an individual is irreversibly comatose, there still remains the question of whether he should be considered dead. This, it can hardly be emphasised too strongly, is not simply a technical, professional medical matter.'Even if the courts are free to take account of other considerations, this consideration is not sufficient to justify the court regarding the irreversibly comatose individual as dead. This is an aspect of the law that needs clearing up. I hope that in preparing for action the Government will consider grounds for legal proceedings. P. D. G. Skegg continues'Death' is something used to refer to what might be called 'apparent,' as opposed to 'actual,' death. Thus a person is sometimes said to have 'died,' but to have been 'brought back to life.' For legal purposes, death must obviously be a once-and-for-all occurrence, so it is necessary to qualify the conventional usage, if such it be, to this extent.All these things must be looked at by the Government.
I hope that the working party will look at the words of Professor Calne, who said:The crux of this dilemma is obviously the short time available after death in which organs can be salvaged for grafting.Someone must consider the whole problem of organ grafting and go into it in depth with transplant surgeons.
I refer to the British Transplantation Society report which says that irrecoverable brain damage may occur leaving the 901 patient indefinitely in a persistent vegetative state. This is part of the answer to the problem raised by my hon. Friend the Member for Wood Green.
Finally, I quote from the journal of the National Heart Hospital. I have visited this hospital and seen Dr. Long-more and his colleagues performing operations. Anyone who has seen this kind of operation is filled with undying admiration for the skills of the surgeons who do these operations. I notice that a Government Whip is now on the Front Bench. Earlier I asked the Minister about the Bristol figures, I wonder whether my hon. Friend on the Front Bench will read out the Bristol figures.
§ Mr. Thomas Cox (Lord Commissioner of the Treasury)
Unfortunately, I do not have the figures with me. I shall ensure that the comments of my hon. Friend the Member for West Lothian (Mr. Dalyell) are conveyed to the Secretary of State, and I shall ask him to reply as soon as possible.
§ Mr. Dalyell
I am very grateful to the Secretary of State for having attended the debate, but I must point out that this is business of the House of Commons. I have spoken at length because I hoped that the Minister would come back to reply to the relevant questions asked by my hon. Friends the Members for Stoke-on-Trent, South, and West Derby and the hon. Members for Acton and Exter (Mr. Hannam). I had the impression that there would be a Government reply to this debate. I do not make a fuss about it because I know that I am lucky to be called, but when notice of two weeks or more has been given that the House of Commons will debate this issue, I should have hoped that the Minister would be on the Front Bench to reply and that we could have the figures.
§ Mr. Thomas Cox
The information given to me is that in Bristol the total cost was £250,000, which is funded directly from the Department. The average cost is about £25. I apologise to my hon. Friend for the fact that I do not have the full figures. Unfortunately, the Minister of State, who was on the Front Bench for some time, had to go to another engagement. I shall ensure that my hon. Friend's comments are relayed to the 902 Secretary of State and that a reply is sent to him.
§ Mr. Dalyell
I thank my hon. Friend for that information. I merely wish to emphasise that many points have been put from both sides of the House and that I expected some ministerial comment to be made on them. I make no complaint in respect of my own remarks because the Secretary of State went out of his way to be here early in the day and I am grateful to him.
§ Question put and agreed to.
That this House recognises the need to amend the Human Tissue Act to allow a 'contracting out' scheme, whereby medical authorities may remove for transplant, once clinical death has been established by two doctors, the organs of any person, other than those who have registered in their lifetime that they do not want kidneys and other organs removed.