§ Sir Michael McNair-Wilson (Newbury)
I am glad to have this opportunity to speak about the transplant programme and the availability of organs. Perhaps I should start by declaring an interest. Last October, I was the recipient of a kidney transplant and, after a slightly shaky start, it is now working well and has transformed the life that I lived on dialysis, as I was told it would, and returned me to near normality.
I am grateful to Professor Peter Morris and all the transplant team at the Churchill hospital in Oxford for the marvellous way that they looked after me. They are a great credit to the national health service.
Transplantation has been described as the gift of life, and that is true in so many ways, especially for people with heart, lung, liver and pancreas problems. Unlike the kidney patient who always has dialysis, they have no fall-back position, so transplantation can make the difference between life and death. And it will do more: it will have a huge and beneficial effect on the quality of their life and that of their families. It will re-create a normal home existence and make possible a return to employment, with all the benefits that that brings.
For kidney patients, transplantation is much cheaper than kidney dialysis, and when a transplant patient goes back to work the state benefits as a result of the taxes that he or she pays because of that employment.
People who are fortunate enough to have had a successful organ transplant, like myself, are bound to feel the greatest sympathy for those on the waiting list. It is on their plight that I want to focus my remarks today, for, as transplantation becomes ever more successful, more people will seek its help and waiting listes are likely to lengthen. There is an over-simplified belief that, if we can find a new way to encourage would-be donors to come forward, we could eliminate the present waiting lists at a stroke and maintain a transplant service thereafter that was roughly in balance between supply and demand.
Some people talk of an opting-out scheme, in which the organs would be taken on death unless the donor had said no before he died. I do not like that idea, because it destroys the idea of organ donation as a gift, voluntarily given. Others have pressed for required requests or required referrals. I do not think that either suggestion is enforceable.
I believe that we shall have to continue to look to intensive therapy units as the main source for organs. Recently, I tabled to my hon. Friend the Under-Secretary a question about retrieval rates in intensive therapy units. In reply he said that, in 1989, just over 1,000 patients died every month in intensive therapy units, and that 8.4 per cent. of them were considered potential cadaveric organ donors on the basis that they were confirmed brain-stem dead and there were no general medical contra-indications to organ donation. That rate of 8.4 per cent. per 1,000 patients means 84 organ donors per 1,000, or just over 1,000 organ donors a year. For kidney patients, that should mean transplant opportunities for 2,000 persons. Bearing in mind that there were 3,931 people on the kidney transplant waiting list last Friday, supply is clearly meeting approximately half the demand. If we are to meet it in toto, 1137 kidney donor numbers must be increased by at least 1,000 a year. In other words, the number of cadaveric organ donors coming from the ITUs must be doubled.
Can that be done, and are there any other untapped organ sources? Certainly studies suggest that some cerebro-vascular patients who die in general wards could be organ donors, and that, if that method were replicated nationally, a further 16.7 donors per million per year could be added to the current United Kingdom rate of 14.6 donors per million per year. Obviously, that would be a valuable addition; perhaps my hon. Friend the Minister can tell me how those studies are being transferred into practice.
The kidney waiting list of 3,931 must be broken down into patients who are not sensitised to transplants—that is, those who have not yet had a transplant—and those who are sensitised, perhaps because they have had a failed transplant. Some 35 per cent. of the waiting list consists of unsensitised patients. Perhaps they, like me, will not have to wait very long to obtain a transplant; I had to wait only six weeks after being approved for the waiting list. Those who are sensitised will inevitably have to wait much longer, because for them the right kidney will take some time to appear.
The questions that remain are where we are to find the additional donors, and whether the ITUs are producing the maximum possible number. They are, I think, the principal source for the foreseeable future. Everyone whom I have consulted agrees that success in finding donors rests on the enthusiasm of the transplant team, and on the sensitivity and effectiveness of the transplant co-ordinators. Theirs is a stressful job, because it involves both arranging for the organs to be taken by the individual surgical teams and seeing, talking to and winning the confidence of the next of kin, without whose consent the donation cannot be made.
In the Oxford region—the region that I know best—there are two to three co-ordinators to the 2.8 million people who are served by the region. It is felt that more co-ordinators would produce more organs, not necessarily in Oxford but in the regions that have fewer co-ordinators. What steps is the Department taking to increase the number of co-ordinators—or is that strictly a matter for the region?
As we know, 30 per cent. of those who are asked to consent to the removal of organs say no. Although many probably have strong religious and ethical grounds for their refusal, it is widely believed that the doctors who make the initial approach to the next of kin would benefit from bereavement counselling before performing that task. As theirs is the first approach, it is clearly of the greatest importance. Is such counselling now becoming standard practice throughout the regions of the health service? If not, why not?
That initial approach is followed by the work of the co-ordinators, to whom I have already referred. We also know that 5 per cent. of the next of kin are never approached about organ donations, probably because the ITU where the donor has originated is not sufficiently motivated, or perhaps because it lacks the facilities to care for a donor—electric ventilation machinery, and other such equipment. Can the Minister enumerate the ITUs that currently cannot handle organ donations because of a lack of facilities? What steps are being taken to bring them up to date?
1138 I was glad to learn recently from the United Kingdom transplant service that every health region is both an exporter and an importer of organs. That is to say, they are providing organs for other regions, as well as bringing in organs to meet their own needs. I was not surprised to hear that Oxford is at the top of the list. Last year it had 96 exports and 61 imports. I was disappointed to hear that a group of London hospitals was at the bottom of the list, with eight exports and 37 imports.
One must wonder why there is such a disparity, whether the Department is taking steps to find out why such disparities exist, and what can be done to produce a more general and even flow between the regions, and why, in 1989, Euro-transplant retrieved more kidneys per million of population than we did and why Austria in particular acquired 52 kidneys per million of population against our figure of 31.7. What magic do the Austrians have that we do not possess? What can be done to improve our retrieval rate? If we could match the Austrian figure, the waiting list would largely disappear.
Recently I was asked why, when a transplant case receives favourable publicity, organ availability increases. The answer seems to be that next of kin—those who give their consent, or otherwise, to organ donation—temporarily become more sympathetic to the idea. That suggests to me the need for still more education and a rather higher publicity profile than has been the case with organ transplantation.
I welcome the fact that this year there is to be a national transplant week. I hope that the Department will use the opportunity to highlight the remarkable success of the United Kingdom's transplant programme to date. I hope also that schools will join in and include, perhaps, a reference to transplantation in biology lessons so that young people, like their families, will talk about transplantation among themselves and see it as the gift of life that it is—a gift that they may wish to have one day, a gift that, sadly, they may want to give. I hope that live donor transplants, although likely to be small in number, will increase, where appropriate.
I do not underestimate the difficulty of increasing organ donations, particularly if we are to bring in people of 65 and over for transplants. I hope that I have suggested some possible ways that could help to improve the supply of organs. I take comfort from a recent article in the Wall Street Journal that describes the problem in America. For once, their problem is worse than ours. Now they are even considering payment of the funeral costs of organ donors as an inducement to donation. I very much hope that we do not have to go down that road. I shall listen with great interest to my hon. Friend's reply.
§ The Parliamentary Under-Secretary of State for Health (Mr. Stephen Dorrell)
By leave of the House, Mr. Deputy Speaker, may I say that I think I should speak for the whole House, if the whole House were here, if I said that there can be few more popular testimonies to the success of the transplant programme than my hon. Friend the Member for Newbury (Sir M.McNair-Wilson). He was an object lesson in courage to all of us during the time that he suffered from kidney problems. It is pleasant to see him looking more tanned and healthy than we have seen him 1139 for several years. He is, as he said, a walking example of the scientific advance represented by the organ transplant programme.
I echo almost every aspect of my hon. Friend's approach to the problem. My hon. Friend began by saying, rightly, that the transplant programme is one of the great success stories of modern medicine and that it is a particular success story of the British national health service. My first memory of the transplant programme is of flickering black and white television photographs from the Groote Schuur hospital in 1969, when Professor Christiaan Barnard carried out the first heart transplant.
When I became Under-Secretary of State for Health last year, my knowledge of medical advances was such that, while I understood that we had come some way since those days, I had no conception of the extent to which organ transplantation is now a routine operation in the national health service. It is done every day and thousands of patients throughout the country now leading normal lives are testimony to its success.
I shall briefly weary the House with some statistics as that is the best way to illustrate the size and importance of the transplanting programme. The number of kidney transplants perforned in Britain has risen from 849 in 1978 to 1,732 in 1989—an increase of more than 100 per cent. in 11 years. More directly relevant to the Christiaan Barnard precedent, 295 hearts were transplanted in 1989, compared with only three in 1979. I shall not seek to calculate that figure in percentage terms, but nearly 300 heart transplants were carried out as routine operations within the national health service. In 1989, there were 295 liver transplants and 94 heart-lung transplants. In 1980, 3,145 people in Britain had functioning transplanted kidneys. By 1988, the figure had risen to 8,000 people, and it has continued to rise since. Like my hon. Friend the Member for Newbury, those people lead virtually normal lives as a result of that great scientific advance.
My hon. Friend was also right to nail one bugbear or misunderstanding of the transplantation programme when he drew attention to the fact that, at least in regard to kidney patients, transplantation is not high-tech medicine which is diverting the resources of the health service away from patients elsewhere in the service. It is more economic than other lower-tech services because, once a successful kidney transplant has been carried out, the health service is no longer committed to the extremely expensive and, from the patient's point of view, dramatically less satisfactory procedures related to various forms of dialysis. That is not to say that dialysis itself is not an advance and that advances have not been made within dialysis, but no one with any understanding of the economics or the quality arguments about the treatment of kidney patients can be under any doubt about the value attached to successful kidney transplantation and the benefits which that scientific advance has brought to patients through the NHS.
It is worth remembering that it is a medical advance available throughout the world, but our record in Britain stands comparison with that of any other country in Europe. We have more kidney transplant patients now alive than any other country in Europe.
The NHS has helped to develop and taken full advantage of the significant developments in transplant 1140 technology over the past decade, including improved drug treatment to prevent the rejection of organs. In view of some of the issues that were the main burden of my hon. Friend's speech, clearly reducing the rejection of organs makes a vital contribution to cutting waiting lists and to the effective use of donated organs. We have also been able to improve methods of preserving organs, which also increases the number of organs available.
It is a major success story, but, as my hon. Friend quite rightly pointed out, there are still more people on the waiting lists for transplant operations than many of us would like. Unlike most other waiting lists in the health service, this list is not determined by the pace at which resources can be made available; it is not a resources-determined waiting list but one which exists, by and large, because of the lack of donors. Each of us can do something about cutting the list by ensuring that, if anything untoward happens to us, our family and friends know that we want our organs to be made available to others. We would all have the opportunity to help cut the list if a tragedy should occur.
I shall now deal with the question how to increase the flow of organ availability because, as my hon. Friend said and as I have also stressed, that is the key to cutting the waiting list and to helping those on NHS waiting lists to benefit from this major advance in health. I entirely agree with the philosophy expounded by my hon. Friend about the way in which we should approach the subject.
We must accept that nobody has a right to anybody else's organs. If something untoward happens, our organs may be of value to someone else but that should be the result of an altruistic decision about how we want our bodies to be used when we die. It should not be as a result of a right of the recipient. We must make that philosophical approach clear and accept it as the basis on which we encourage organ donorship. It is our responsibility to make such a decision and to ensure that our friends and relatives are aware of our views. It is the responsibility of the living whose organs may be of use to someone else; it is not anyone else's job to claim the organs.
I agree with my hon. Friend that it is not a decision from which we should be required to opt out. It should be a positive decision that, when we die, we want our organs to be available to someone else. It is up to the individual to make his decision known. Furthermore, we should not make much progress if we imposed a statutory requirement on the professional people present at a bereavement to make a request for organs in conditions which they do not believe they can handle or which are unlikely to produce a positive result. It would make the law an ass to require them to make a request which they believed as professionals, to be inappropriate. The law would be absurd. I do not support the principle of requiring someone to opt out of, as it were, organ harvest; nor do I believe that we shall make progress by imposing a statutory obligation on professional people to make such request in the circumstances that I have described.
We must find a way of eliminating the barriers to donorship which exist partly as a result of inadequate professional training but, perhaps pre-eminently, as a result of a misunderstanding by the majority of NHS patients and by society as a whole of what organ donorship means and the circumstances in which organs 1141 can be taken from a dead or dying donor. I must correct that. The issue of donorship may arise when the patient is dying, but those organs are taken when the patient is dead.
It is important to consider how to encourage organ donorship. My hon. Friend concentrated on the number of people who die in intensive therapy units whose organs could be of value to the transplant programme but who do not donate them. We have set up a national audit system to try to establish precisely how many people die in those units without their organs being available for transplant and why. This is an important matter, and we are seeking to inform ourselves not only of the number of missed opportunities as a result of that phenomenon but how we can ensure that that flow of organs improves. My hon. Friend is right in believing that that is the most effective way in which to conduct discussions on the issue.
It is also important to consider the motivation of the intensive therapy units. The professional staff are emotionally involved in attempting to save a patient's life. When a patient dies, the staff often suffer the same feelings of bereavement as the family. Such deaths are demotivating and demoralising for the staff, but it is important to remind the staff that that death is an opportunity for secondary benefit, however great the primary tragedy. Such motivation must be included in the training of staff.
My hon. Friend will also be aware of the recompense for costs incurred in intensive therapy units when they provide organs for use in another hospital. I assure my hon. Friend that we are addressing that question. We are also considering the training of professional staff so that they are aware of the secondary benefits of the primary tragedy to which I referred. We are also considering training on how to ask the next of kin for the consent which must be given before a dead patient's organs are taken.
1142 My hon. Friend was right to stress the importance of the transplant co-ordinators and, if I may, I shall write to my hon. Friend on the specific question that he asked about them. They have a key role to play in raising the awareness of the public of the importance of reaching a decision on organ donorship.
We should all face the fact that, without notice, we might find ourselves fighting for our lives in an intensive therapy unit as a result of an accident. That would bring us face to face with the possibility of our death, as well as of the fact that parts of our body may be of value to someone else. In those circumstances, surely it is better to have discussed the matter with our families so that they know our views. It is important that our concerns should have been addressed and allayed before we have to reach a decision on such donorship. The emotionally charged atmosphere of an intensive therapy unit is no occasion to be approaching this issue for the first time.
It is a matter about which, as citizens, we should know our views and be sure that our families know those views so that when the question is asked the answer is automatic. We should be trained, as it were, in knowing what to do in such circumstances. We should be like the parachutist presenting himself at the back door of the aeroplane. He knows what his reaction will be, because he has done it often on the ground. His reaction becomes second nature and automatic.
The most important step we can take is to be sure that the public understand the benefits that can come from transplantation. They must know that the subject requires everyone to make a decision and to be sure that that decision is known to our families. We must also be sure that all of that happens before we find ourselves in an intensive therapy unit having to make the decision for the first time in anger.