HL Deb 19 November 1997 vol 583 cc622-30

6.33 p.m.

Lord Norrie

rose to ask Her Majesty's Government what plans they have to improve the care of patients awaiting an organ transplant and what steps they are taking to encourage an increase in organ donation.

The noble Lord said: My Lords, in tabling this Question, my intention is to debate an emotive issue that is of great importance to thousands of patients awaiting transplants, be they cornea, kidney, heart, lung or liver. First, I wish to hear from the Minister what steps the Government are taking to improve the care which there patients receive. Secondly, I wish to hear what steps the Government are taking to increase the rate of organ transplantation.

I have deliberately cast the net widely so that issues relating to the broader transplant community can be raised. While I intend to set out some of the concerns relevant to all branches of transplant medicine, I shall refer in particular to renal services and will identify areas where I believe progress is necessary. Tonight I speak not only as president of the National Kidney Federation, the only organisation run by kidney patients for kidney patients, but also as the parent of a son who has kidney failure. Happily, after four and a half years of dialysis, my son has had a successful transplant.

I am conscious of the pressures on kidney patients and their immediate family. I am also knowledgeable about another important aspect; that is, when the next of kin of a potential donor is faced not only with bereavement but with a decision on whether the organs of the deceased can be used for transplantation.

I wish this to be a purely constructive debate which will produce for the Minister a range of ideas that her department can investigate and can report back in detail. I look forward to hearing the maiden speech of the noble Lord, Lord Hughes of Woodside, whose experience in medical matters I am sure will be a positive asset to this House. I am grateful to the Minister who, during the summer months, gave me time to put across some of my ideas and I thank her for her encouragement in tabling the Question tonight.

At the outset, it might be helpful to identify the large number of patients awaiting a transplant. I wish to acknowledge the help of the UK Transplant Support Service Authority in compiling the figures. Substantially more transplant operations are carried out today than 10 years ago and I pay tribute to the NHS and its staff for that. However, I must express concern that the number of kidney transplants plateaued in 1990 and would now seem to be in decline. I shall deal later with some possible causes for that decline and propose some solutions.

Currently, more than 5,500 people are awaiting a kidney transplant, which is an increase of 5 per cent. on this time last year; 677 people are awaiting a heart or lung transplant, an increase of 9 per cent.; and about 200 people are awaiting a liver transplant, a 6 per cent. increase on last year. In 1996, the total number of kidney transplants was 1,600, which was down by more than 8 per cent. on the previous year. The number of heart transplants totalled 290 and there were 651 liver transplants.

Currently, patients are waiting on average well over two years for a kidney and the number of patients on the waiting list is growing. Patients on dialysis have a poorer quality of life than those who receive a transplant and the cost of renal services to the NHS is increasing because dialysis is more expensive than transplantation. The problem boils down to a shortage of donor organs. There is no one solution to the problem, but I wish to set out some areas where progress may be possible.

The first and most obvious step is to encourage more members of the public to carry organ donor cards. That scheme is backed by the Organ Donor Register, a centrally held list of those willing to donate their organs in the event of their death. I am heartened to see that the register has recently topped 4 million members. I trust that the Government will continue actively to promote the organ donor scheme and encourage the public to make that most precious of donations, the gift of life. Will the Minister tonight pledge to increase the number of people carrying a donor card to 5 million by the end of the century?

Currently in the UK we opt in to organ donation by carrying a donor card. In other countries, such as Austria and Sweden, consent is presumed. In those countries, an individual who does not wish to donate his or her organs must opt out. A register is set up to record that preference. The BMA does not support a donor scheme where people would have to opt out of the system. I have received representations in favour of a change in our system and I am sure that that is an issue which will continue to arouse lively debate.

I wish to refer to my noble friend the late Lord Finsberg. Lord Finsberg identified the fact that as the law stands the next of kin may overturn the wishes of a deceased relative to donate his or her organs, even when the deceased carries an organ donor card. Lord Finsberg introduced a Bill to back the wishes of the would-be donor in law. Following, I suspect, considerable arm twisting by the Department of Health, that measure did not become law and it was withdrawn. I believe that the measure would command public support and I urge the Government to take a lead in the debate, perhaps through the publication of a draft Bill for consultation.

I should now like to commend to this House the work of the Manningford Trust, a charitable organisation which exists to advance organ transplantation. The trust makes a number of important recommendations in a report published last month on organ transplantation, including the establishment of a national transplant commission. The commission would work to break down barriers to organ donation and consider whether there are lessons we can learn from approaches adopted in other countries.

A national transplant organisation has already been established in Spain resulting in a doubling in the number of organ donors between 1989 and 1995. The Spanish transplant organisation also oversees the recruitment of trained transplant co-ordinators in every hospital and the training of medical staff in counselling for relatives. Those measures have improved the availability of organs and therefore the number of transplant operations conducted.

The waiting list for a kidney transplant went down by almost 20 per cent. in Spain in the five years to 1995 and Spain has the highest rate of liver transplants in the world. That is impressive progress and is a credit to the Spanish transplant organisation. I accept that there is a higher rate of road accidents in Spain which affects the availability of suitable organs. In this country we have been extremely successful in cutting the number of road deaths through seat belt and crash helmet legislation and, indeed, drink-drive campaigns. However, I recommend the Spanish system to the Government. Would the Minister consider arranging a fact-finding mission to identify what we can learn from the progress that has been made there to increase organ donation?

The National Kidney Federation recommends that a thorough examination of elective ventilation should take place in the UK. Elective ventilation is the process whereby, with the consent of relatives, selected patients considered suitable for organ donation are kept breathing temporarily by artificial means when natural breathing ceases. In that way, the organs are preserved in a state fit for transplantation following certification of death. That has proved to be an effective means of increasing the number of organs available for transplant in hospitals where it has been practised.

In the Exeter kidney unit at the Royal Devon and Exeter Hospital, notable increases in the number of organs for transplant were achieved through the application of elective ventilation. Indeed. Exeter managed to keep the number of patients on dialysis stable for four years at a time when numbers were increasing everywhere else in the country. It was able to carry out more kidney transplants because it achieved the highest rate of organ donation in the UK through that system of elective ventilation. I regret that on the advice of the Department of Health, that procedure has been discontinued and the transplant rate in Exeter has fallen dramatically.

There are a number of ethical concerns associated with elective ventilation. Exeter worked to a protocol endorsed by the Royal College of Physicians, the Royal College of Nursing, the British Transplantation Society and the BMA. The BMA Ethics Committee addressed the subject and is satisfied that the procedure is acceptable, subject to the enforcement of strict protocols. The National Kidney Federation is also in favour of the procedure. With that in mind, will the Minister not agree that constructive progress is possible? With the co-operation of the Department of Health and the resolution of moral and legal arguments, there are considerable savings to be made through elective ventilation due to the difference in cost between dialysis and transplantation; and more patients will receive a transplant, which of course is the best quality treatment for kidney failure.

Therefore, I urge the Government to be brave and stand up to their official advisers and take a lead in bringing together interested parties to seek a consensus. The medical profession, those concerned with ethics and the law, and the public must be encouraged to participate in that debate. Ministers may be surprised at the public's enthusiasm for organ donation.

I turn now to xenotransplantation. There has been much speculation in this House and elsewhere about the use of animal organs in transplantation. Having persuaded your Lordships, I hope, of the shortage of organs for transplants, this would seem to offer a panacea. However, there are many issues that we need to tackle before transplantation of animal organs into humans becomes a reality. This is at the cutting edge of health technology and there are naturally concerns such as the risk of cross-infection and the moral arguments about using animals in this way. I consider it important that we should move forward with all speed to tackle the ethical and regulatory issues surrounding xenotransplantation, and I know that the noble Baroness, Lady Wharton, intends to refer to these issues in more detail.

It is of paramount importance that the science should develop within a framework that satisfies the concerns of the public with regard to the use of this new technology. But, equally, it would be regrettable were progress towards the use of animal organs in human transplantation to be held back by the failure of politicians to agree an appropriate framework. Can the Minister give us any information about the establishment of a statutory body for the regulation of xenotransplantation as proposed in the Kennedy Report? In my view, xenotransplantation is a very exciting development and I wish the scientists well in their research. However, this technology may still be some way over the horizon. That is not an excuse for inaction in addressing the issue of organ shortages now.

I now turn to the care of patients with renal failure. There are an estimated 23,115 patients being treated for kidney failure in England alone. With long waiting lists for a kidney transplant and a shortage of organs for transplant, it is important that patients receive top quality care. There has been progress in that direction, but I want to draw attention to some national and international comparisons to highlight where I believe further progress is required.

An organisation known as the European Dialysis and Transplant Association has been set up to collect information about patients accepted for dialysis. That is one indicator of how effectively countries are providing for patients with kidney failure. Their data shows that the United Kingdom is 21st in the list of countries ranked according to the number of new patients per million of the population per year accepted for dialysis. We come just ahead of Bulgaria and lag behind a majority of our European partners. Greece, Belgium, Italy and the Czech Republic all accept more new patients for dialysis each year than we do.

I shall put some figures to this analysis. The Renal Association has recommended that a minimum of 80 new patients per million of the population will require dialysis each year. This is a conservative estimate as it does not take account of variations in ethnic mix, to which I shall refer shortly.

The take-on rate of new patients in Greece is 118 patients per million of the population; in Belgium it is 103; in Italy it is 91. These figures refer to 1993, the latest year for which international comparisons are available. At that time the UK total was 60 patients per million.

I sought to shame the previous government into action and I am pleased to report that there has been some progress. A recent Renal Association report estimates the figure in 1995 to be 82 patients per million in England and Wales. This still leaves us some way behind the Czech Republic, with a rate of 92 patients per million of the population.

I shall continue to harry the new Government because the figures as they stand are, still, unacceptably low. There is no such thing as a waiting list for renal replacement therapy—if people with kidney failure do not receive dialysis. they die.

I should now like to focus on what is going on in different parts of the United Kingdom. We see that, just as on a European level, large variations in the take-on rate of new patients exist in different parts of the UK.

At the laudable end of the scale, the take-on rate of new patients per million per year in Wales is 108. In Merseyside it is fewer than 40. Of course, a majority of regions lie somewhere in the middle. But as the example I have just given shows, there are stark contrasts between regions which lie in close proximity. A patient's access to renal services varies substantially with his postcode. That is fundamentally unfair and unacceptable. I believe that it has been referred to in a different context as the lottery of NHS care.

I should just like to refer to the experience of patients in Lancashire. I have in my possession a letter to Mr. Austin Donohoe, the chairman of the National Kidney Federation, from a consultant nephrologist in Preston. I am pleased to say that in this part of the country there is a very constructive relationship between the department of renal medicine and kidney patients. The unit covers a large population of some 1.6 million people. Of the four purchasers of renal services in the area, it is not really putting in sufficient funds to pay for a take-on rate of 43 patients per million of the population. Let us remember that the Renal Association recommended a minimum take-on rate of 80 patients per million. According to the Preston consultant there is, a lack of commitment from the Purchasers to invest sufficient additional funding into renal medicine … adequate money is not forthcoming to increase access rates".

The publication today by the Audit Commission of a report recommending improvements in the way in which specialised services ought to be commissioned is a timely contribution to our debate. I know that the Government are committed to tackling these inequalities and I look forward to very early progress.

As I have run over my time, I move on now to my conclusions. I consider that health authorities have a critical responsibility for commissioning high quality renal services. I have already mentioned the Audit Commission's contribution to the debate. I should also point out that Parliament is currently updating the purchasing guidelines for renal services. I hope that they will be promoted by the Minister when they are published.

I should like to come to some conclusions about how we might increase the availability of organs for donation. First, I would strongly urge swift and positive action by the Government to seek a consensus on elective ventilation. Secondly, I would ask the Government to lead the debate on xenotransplantation. The public has yet to form a view on these matters—the Government should be active in this and not leave it to the more sensational branches of the media to shape public opinion. And, finally, I have asked the Government to investigate the Spanish system to see whether we can apply any of their protocols in this country.

6.52 p.m.

Lord Hughes of Woodside

My Lords, I welcome this opportunity to take part in such a debate. I did not expect the transition from the other end of the building to this part to be easy. The transition is far from complete, and. indeed, I have much to learn. However, the generous welcome that I have received from noble Lords of all parties and of none and the courtesy and helpfulness of the staff have certainly meant that the transition has been painless so far. I am grateful for that. I should like to congratulate the noble Lord, Lord Norrie, on introducing this debate on the vital subject of those awaiting transplants and the need for more organs to be available. As President of the National Kidney Federation, the noble Lord brings a wealth and depth of knowledge to the debate with which I fear I cannot compete.

I believe the facts are reasonably well known. Currently waiting lists, especially for kidney transplants—the most usual surgery—are increasing. In 1994, 4,851 people were on waiting lists: the current figure is over 5,500. At present, some 30 children under the age of 10 are awaiting kidney transplantation. There are 147 between 10 and 20 years old. If one takes the middle age, if you like, from 30 to 50 years of age, there are 2,400 people waiting. Indeed, there are even four people aged 80 and over waiting for transplants.

The numbers of those waiting for heart, lung and liver transplants, although they are much smaller, are also increasing. It is only in the case of heart-lung transplants that there is some stabilisation and perhaps a smaller reduction in the waiting list. The reason is the immense shortage of donor organs. There are two things which bring that about. First, there is the increase in medical technology which keeps people alive longer; and, secondly there is, ironically, the growth of legislation as regards wearing seat belts and the increased attention by car manufacturers to safety, both of which have brought about a decrease in the number of deaths. Of course, we applaud that immense saving of life. Nevertheless, it is a little like the old engineering principle that, for every action there is an equal and opposite reaction'.

What are we to do? I have to say that I reject immediately the proposition that xenotransplants—that is, animal to human transplants—are a solution, although there is much experimentation going on in that respect. The committee under Professor Kennedy of King's College into the ethical and scientific issues approved the procedure on ethical grounds but was unsure about proceeding given current scientific knowledge. There are problems about the transfer of viruses, and so on. Therefore, future generations may well take a different view, but at this moment I believe that it is a bridge too far to cross.

So the question remains: what can we do? The most obvious' answer would seem to be to increase the amount of advertising so that more people carry a donor card. That certainly would be worth doing, but it will not solve the problem by itself. I recently learned, much to my astonishment, that the carrying of a donor card does not automatically mean that organs can be used. In any event, as far as I am concerned, I do carry a donor card, but I suspect that the only service which my organs could provide would be as a demonstration to medical students of what happens if you do not follow medical advice about living a healthy lifestyle.

However, the terms of the Human Tissue Act 1961 require that it has to be established that the deceased has not changed his or her mind since signing the card. In the case of sudden death, or even an expected death, the next of kin and relatives are undoubtedly traumatised. It is perhaps understandable that relatives are often reluctant to give consent. Figures vary as to how large that consent is. In the case of intensive care patients, the figure varies according to one survey or another between 25 and 50 per cent. That is even more so when the deceased has not exercised the right to carry a donor card.

It must be dreadful to be told one minute that your son, daughter, husband, wife, partner or whomsoever has been killed in an accident and then, moments later, be asked whether you will make the organs available. The wonder perhaps is not that so few people refuse but that so many actually give their consent. Our system is, of course, a "contracting in" system; in other words, you have to carry a card. In the early 1970s, my colleague Tam Dalyell and I canvassed the idea that we should have a contracting out donor card. The outrage at this hugely contentious issue was such that we dropped the idea fairly quickly. Fortunately, the idea has not gone away.

I would certainly wish to join the noble Lord, Lord Norrie, in paying tribute to the late Lord Finsberg, who, I understand, successfully piloted a Private Member's Bill through this House in 1995, only for it to fall in the other place. I should also like to add a tribute to John Marshall, the former Member of Parliament for Hendon South, who attempted an identical Private Member's Bill in February of this year which, unfortunately, failed due to lack of time. The issue remains contentious, but I believe that recent comment in press reports and elsewhere suggests that the time may be right to move towards this solution.

The trauma of waiting for a transplant—the trauma for the relatives—is immense but there are other issues which we should bear in mind. In addition, there is the anguish of patients and their relatives who are told that a transplant is not an option. The issues that arise there can be very delicate. Of course, such decisions must be taken on purely medical grounds. Some have suggested that lifestyle should be taken into account in bringing about a prognosis on whether someone will survive if given a transplant. Members of the medical profession have immense duties placed upon them as regards who shall and who shall not have a transplant. In fact, it is who shall live and who shall die.

Being on a waiting list in itself is not a guarantee of a transplant. The number of transplants of kidneys, for example, in 1996 in the UK as a whole was only 1,700, made up of 1,416 in England, 136 in Scotland, 90 in Wales and 58 in Northern Ireland. When one thinks of a waiting list of over 5,500 one realises the difficulty that we are in.

There are issues of lifestyle. I once had a constituent whose daughter had an adverse reaction to an Ecstasy tablet and she was not offered a transplant. The parents believe to this day that a judgment was made that she should not have a transplant on ethical grounds rather than on medical/ethical grounds. A public inquiry revealed that that was not the case. However, there are clearly fine lines of distinction on these issues. I certainly do not wish to proceed down that particular contentious road this evening.

In conclusion, there are three things that we can do. First, we could certainly have a significant advertising campaign to increase the carrying of donor cards. Secondly, we must clarify the Human Tissue Act of 1961 to allow the automatic use of organs of those who carry a donor card without further reference to relatives. Thirdly, I believe the Government must have the widest possible consultation with a view to moving speedily to a contracting out system of donor cards as soon as possible. We have debated this evening—sadly, shortly—one of the most vital things that we have to give to people: the possibility of prolonged life. I hope this debate will bring some clarity to the issue. I thank your Lordships for your courtesy in listening to my remarks.

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