Kidney Transplant Bill [HL]
Baroness Finlay of Llandaff (Crossbench)
My Lords, I beg to move that this Bill be now read a second time.
I am delighted to introduce this Bill, particularly after the clear support of the Prime Minister and this week's report from the Organ Donation Taskforce which details all the needed infrastructure improvements. This Bill, if passed into law, will authorise doctors to remove from dead patients over the age of 18 one kidney for transplant purposes. There are strictly defined conditions under which such action may be taken. In particular, the kidney to be removed must be suitable for transplantation and there must be no evidence either from a central registry or from the dead patient's relatives that he or she has opted out of being a potential kidney donor. I emphasise that the relatives must be consulted about the person's views.
Why do we need such legislation? More people are waiting for kidney transplants than for any other organ. More than 7,500 people are this morning waiting for an organ transplant and of those over 88 per cent need a kidney, an organ without which they will soon die. But that does not tell the whole story. There are more than 20,000 patients on dialysis who have end-stage renal failure, many of whom should have a transplant but are not registered because the list is already dauntingly long.
Since I introduced the Bill on
Every year in England and Wales there are nearly 3,000 deaths from brain tumours, nearly 7,500 deaths from intracranial haemorrhage and 20,000 deaths in accidents of various kinds. If only one in five of those people had a kidney suitable for transplantation and it could be established that they had no objection to its removal after death, we would virtually eliminate the waiting list for kidneys at a stroke. But the sad reality is that it is only in intensive care units that the necessary conversations with relatives tend to occur and a transplant co-ordinator is introduced to the family. When that happens, many families want to donate, despite their grief, but the conversations are just not happening often enough.
No one should underestimate the terrible trauma for these families, faced with an unexpected tragedy and then, on top of that, having to decide about organ donation. They have to try to guess what the deceased person would have really wanted in the circumstances and often end up feeling that they just cannot face anything else. It is not surprising that 40 per cent decline consent in the acute pangs of their grief. Sadly, very many of them subsequently regret the decision. Interestingly, the task force report estimates that the infrastructure improvements which it recommends should over five years increase the consent rate for all organs from 60 per cent to at least 70 per cent, but that would still leave a growing gap between supply and need.
We know that 24 per cent of the population have registered a wish to donate organs, but data suggest that about 90 per cent of the population support donation after death. However, when the time comes to donate, in 40 per cent of cases that wish will not be respected. I emphasise that although these people are carrying donor cards, their wishes are not automatically respected. The Bill reflects the reality that people want to give the gift of life after their death. The law currently assumes the reverse—that they do not want to donate and that permission must be sought.
How would my Bill change the situation? It presumes the deceased's willingness to donate, a presumption which would have to be validated before a kidney could be removed. This would be done by a check to establish whether the deceased had registered not to donate and by discussions with his or her family members about their understanding of the wishes of the deceased. So the Bill contains a clear safeguard. If the family states that the person would not have wanted to donate, the kidney cannot be taken.
There is no provision here forcibly to remove a kidney; such action would be unlawful and unethical. It would devastatingly compound the overwhelming grief of the family—who anyway would not supply the important background information about the person's medical history which is part of the process to determine an organ's suitability for donation. However, the Bill would ensure that these all-important but difficult conversations do happen. Today, the opposite is too common an experience—clinical staff do not even ask. As Mrs Stoner said about her daughter's death after she was hit by a car:
"Nobody approached us in the hospital to ask whether we would think about donating Jade's organs".
I emphasise, in case it is not completely clear, that we are talking about taking organs after death. Even though it is possible, as noble Lords will be aware, to remove one kidney from a living person without harm, my Bill contains no provision for harvesting organs during a patient's lifetime. Let there be no mistake: we are talking about when someone is dead and their organs are of no further use to them.
I hope I have demonstrated that there are strong humanitarian grounds for the Bill, to save the lives of literally thousands of people in need of kidney transplants, but there are other reasons on which we should reflect. A kidney transplant costs around £46,000 in total, plus about £3,000 a year in follow-up medication. So if a transplanted kidney lasts 10 years, the total cost to the NHS is nearly £80,000. Without a kidney transplant, the same patient on haemodialysis would cost more than £300,000—nearly four times as much in the same period.
Moreover, the life expectancy of someone on haemodialysis at the age of 40 is 10 years, but with a kidney transplant the same person's life expectancy doubles to 20 years. These people are contributing economically to our society; they are often young patients who are the breadwinners. The proportion of patients who can return fully to work is much higher post-transplant than with dialysis, and their reported quality of life is much higher. The Bill therefore makes sense in economic terms alone. However, when we add in the cost to society of young parents dying much earlier than they otherwise would for lack of a kidney—the social cost of bereaved children, and the loss to the nation of potential income from people who are economically active—then the cost savings in medical care fade into insignificance. It more than offsets the cost of the public communication programme needed to ensure that the public are aware of their right to opt out and of providing information to help people discuss their wishes.
I shall briefly address some specific concerns that have been raised with me. Why is the Bill restricted to kidney donation? First, the major need for organs is for kidneys. Secondly, there is a despicable trade in selling kidneys in some parts of the world by people who are desperate for money for their families to live on. They need international aid, not a market for kidneys that puts their lives in jeopardy and flagrantly exploits their terrible poverty. My Bill will discourage this trade because UK patients will no longer go abroad in desperation to buy a trafficked kidney. Thirdly, there is no emotional or ethical complexity regarding the removal of one kidney; almost everyone has two, one is almost a spare part. It is not like the concerns that some have about taking a heart, lung or liver, or even about the new horizons of face transplants.
The Bill concerns only England and Wales. It concerns those above the age of 18, not children. While in law a minor aged 16 or 17 can consent to a procedure, their withholding consent—
Lord Foulkes of Cumnock (Labour)
My Lords, the noble Baroness says that the Bill extends only to England and Wales—which is specified in the "Short title and extent" clause. However, Clause 2(2)(e) states that one of the conditions should be that,
"the recipient is ordinarily resident in England, Wales, Scotland or Northern Ireland".
Is there not some discrepancy there?
Baroness Finlay of Llandaff (Crossbench)
My Lords, I am grateful to the noble Lord. We have borders that are not borders at all. Someone from Scotland may be on a day trip south of the Border and have a fatal road accident. He may be taken in and his identity may be established, in addition to the fact that he is dead and has a good tissue match with someone waiting on the transplant register. However, this House cannot legislate for health matters in the devolved Administration in Scotland. I would hope that if my Bill became law, the Scottish Parliament would follow and introduce its own compatible legislation. Indeed, we have seen compatible legislation on issues such as mental capacity. I hope that that answers the question.
I return to the issue of age. In law, a minor aged 16 or 17 can consent to a procedure and their withholding consent can be overridden at this age. The Bill concerns instructions left to the family about what a person wants done with their body parts after death. It concerns gifting after death; in this case, the gifting of organs. The Human Tissue Act applies in this case more than any other legislation, and in that Act 18 is the age of adult consent in England and Wales. Thus, for anyone under 18, a parent would have to consent to use of the organ. The Mental Capacity Act seems not to apply after death; the Bill does not concern consent to remove organs for transplantation from a live donor however much they have lost capacity. However, for the avoidance of doubt regarding a person's wishes, the Bill allows a person registered as having power of attorney for welfare decisions to be able to override the presumed consent, because that may be the only person with whom the person who lacked capacity and who is now dead has had the relevant conversation, rather than with their relative. As time is of the essence in the viability of organs, the Bill ensures that the relevant transplant authority has access to the list of persons registered with the Court of Protection as having been granted such a power of attorney.
The maintenance of a register of those who have opted out could be held on a separate database by UK Transplant or by the NHS body that has been tentatively proposed as overseeing transplantation in the UK. However, the individual should write out any objection to donating and discuss it with their family and GP so that their wishes are clear.
There are also specific safeguards in the Bill to address concerns raised by the task force. The doctor certifying death must be independent to avoid any pressures that might affect end-of-life decision making. Clear protocols already exist for establishing brain-stem death, but kidneys can certainly be taken also from donors whose hearts have stopped and who have died more in accordance with what one might call the more old-fashioned, and more standard, way of certifying death. Only an authorised transplant team can remove the kidney for human transplantation to a UK resident who is already on the transplant register, and only after carefully establishing that there is no evidence of an opt-out. The team must discuss that with the family or next of kin. In practice, if a family was too distraught to give medical details of the dead donor then that would effectively mean that the organ was unreliable and could not be used.
I have received some helpful suggestions on how my Bill can be improved. The important point is that the transplant team must have taken all reasonable steps to discuss with the next of kin the voluntary donation of other organs, including the other kidney. This would underpin exploring the application of clinical indicators to donation, as proposed in the task force report. I have already drafted wording to amend the Bill in this way, so that the donation of other organs has to be considered and spoken about.
The BMA has this week called for,
"a system of presumed consent with safeguards".
My Bill does precisely that and steers a middle path. By normalising giving, the Bill will open the door to ensuring that healthcare professionals have the important conversations with those who may become donors, or with their relatives when death is very sudden. It will help to ensure that people think about their own death and what they want to happen to their organs and that they discuss this with their next of kin well in advance.
I hope that the Bill will change the face of transplants. As the task force report recommended, we need to make organ donation usual. My Bill will ensure that we relieve the terrible suffering of those currently waiting for a transplant, knowing that they will probably die during that wait. We are only talking about a kidney—one kidney that can be taken presuming consent, and then the door will be opened for people to give the gift of life to others after their death with other life-saving organs, rather than have them rot in the ground or burnt in a crematorium after a young, fit person has died tragically in an accident or through brain trauma.
The Bill is needed. For many patients who are facing death, a new kidney can bring life. The Bill will increase the number of kidneys that are available, which will in turn increase the number of successful transplants performed, because it will be possible to find much closer tissue matches. Furthermore, it is completely compatible with this week's report from the Organ Donation Taskforce. I commend the Bill to the House.
Moved, That the Bill be now read a second time.—(Baroness Finlay of Llandaff.)
Viscount Chandos (Labour)
My Lords, I am the first speaker to be able to thank the noble Baroness, Lady Finlay, for her initiative, concern and foresight in introducing this Bill today, and I pay tribute to the very clear exposition of her case.
Before I make a few brief comments, I declare my interest as the president of Kidney Research UK, formerly known as the National Kidney Research Fund, having taken an interest in renal disease and renal failure since my father became one of the first patients to undertake haemodialysis in 1965. Watching the development of transplants, for which he was not suitable, over the past 40 years has been a matter of huge encouragement. Although life on dialysis is clearly a significant improvement on the alternative, it clearly leads to a much more constrained lifestyle than can be achieved following a successful transplant and, as the noble Baroness mentioned, those who have had a transplant can expect a far superior life-expectancy.
More than three years ago, I introduced an amendment to the Human Tissue Bill, which was designed to enable a move towards a system of "soft" presumed consent in relation to organ transplants. It would have allowed doctors to use organs unless the person concerned had indicated a desire to opt out but would still have required doctors to consult relatives wherever possible. At that time, the then Minister, my noble friend Lord Warner, politely resisted the amendment but gave strong encouragement, saying that the Government recognised the vital importance of increasing the availability of organs for transplantation and indicating their openness to potential changes in the law, in parallel with further investment in IT, transplant co-ordinators and other resources.
Since then and most recently, of course, there have been the Prime Minister's very welcome comments of last weekend, as well as the report this week of the Organ Donation Taskforce. I enthusiastically welcome that report and see it as a significant step forward in the broad issue of organ transplantation.
All those initiatives are very encouraging but, most importantly, we must turn words into action, as every year that passes with an inadequate supply of organs available for transplantation represents many hundreds of lives lost or lives made more difficult or less fulfilling due to the constraints of either haemo or peritoneal dialysis.
Despite that, however, I am afraid that I shall probably give the Bill only the sort of broad moral support that I have been accustomed to receiving from the Government on any initiatives that I have taken, as I believe that it contains one or two specific problems, which in my view point towards the desirability of a broader, government-introduced course of action and legislation.
Concerned though I naturally am about the problem of renal failure and its treatment, I feel critically that it would be invidious to legislate separately for presumed consent in relation to kidneys alone and not all organs. I listened carefully to what the noble Baroness said about the requirements for doctors to look at other organs, but I think that having specific legislation for one type of organ and not for others would be very problematic. I also recognise the ingenious suggestion in the Bill that presumed consent should refer to only one kidney out of two, which I understand is intended to address a number of issues, including religious ones. However, clearly it is not an approach that can be applied to all other organs. In short, we should recognise that the step towards soft presumed consent—or however we describe it—is a very big one, and therefore, for all the urgency of this matter, we must be very careful to deal with the matter properly and comprehensively.
Perhaps I may take a fraction of a minute to make the obvious point that end-stage renal disease, which leads to the requirement for either transplant or dialysis, should and can be avoided or delayed. Therefore, at the same time as looking at the need to improve the supply of organs for transplantation in the area of renal medicine and all other areas, we must ensure that that in no way diminishes our focus on research and, critically in respect of renal disease, education, particularly in the most vulnerable parts of the community where there is a very high incidence among both the Asian and Afro-Caribbean communities.
In conclusion, therefore, I very much welcome this Second Reading debate as an opportunity to intensify attention, and accelerate action, on increasing the availability of kidneys—and other organs—for transplantation. If, as I suspect, the formidable challenge faced by any Private Member's Bill means that this Bill, amended as it obviously could be, does not go on to the statute book, there will be a heavy obligation on the Government to ensure that considered, comprehensive action that is needed, including any legislation, is implemented as soon as possible.
I very much hope that if the Minister does not feel that she can use this Bill as a base for moving forward, she will be able to give your Lordships' House the assurance that we will not, in three years' time, still be discussing the need for action but seeing the benefits of action already taken.
Baroness Verma (Shadow Minister, Innovation, Universities and Skills; Conservative)
My Lords, I, too, heartily congratulate the noble Baroness, Lady Finlay, on the Bill. As people live longer and technical advances are made in science and medicine, the Bill will become increasingly important as it will enable the public to be better informed.
I shall concentrate on the black and south Asian communities. I have no expertise or other knowledge in the field of medicine, but I am concerned about the lack of progress in reaching out to black and south Asian communities. I shall speak on research done by others. My interest started from being closely involved with watching family members and friends, and from watching people wait, often with great desperation, while resigning themselves to the fact that no organ transplants would be available to them. People in the south Asian and Afro-Caribbean communities have a prevalence of type 2 diabetes four times higher than people in the white community. There are around 300,000 people from those communities with type 2 diabetes, and the number is growing. It has been reported that around 20 per cent of the south Asian community aged between 40 and 49 have type 2 diabetes—and that figure is growing—and by the age of 65 a third of that population has it.
Professor Randhawa of Bedfordshire University has spent many years researching issues relating to kidney disease and diabetes among minority ethnic groups. His research has been pivotal in pushing forward the need to see how much more can be done to highlight issues relating to donor information, transplants and support for people in those groups. One in eight people who died in 2006 while waiting for a transplant were of Afro-Caribbean or south Asian origin. While people from the south Asian community make up just over 4 per cent of the population of the United Kingdom, 6.5 per cent of those needing liver transplants come from that community. Approximately 14 per cent of people waiting for a kidney transplant are from the south Asian community. The lack of donors coming from the Afro-Caribbean and south Asian communities will see the human and economic costs rise, and that needs addressing. I hope that the Bill will do that.
Studies show that giving information on small lifestyle changes can significantly reduce the onset of type 2 diabetes. Poor physical activity, high fat and sugar diets and cultural needs are among the range of factors that need to be addressed. I was horrified to read while on a flight to India last year that in India they are expecting 30 million people to suffer from diabetes within the next 25 years, and that number is rising. That is a frightening figure. We must convince people to be part of a donor register or to be prepared to donate after death. Much research has been undertaken to question why there continues to be a lack of awareness of the need of donors among those two communities. Most people remain unaware of the specific need for organs from their communities, yet among the main south Asian religions of Hinduism, Islam and Sikhism the notion of gifting to assist society is highly valued. It is therefore important that a number of different channels be used to raise awareness among different generations from those communities.
If we were to adopt the opt-out system, there would be willingness to broach the subject, which is difficult and emotionally charged as it currently stands. It would be discussed more easily in those minority communities. I have seen misery at first hand. I watched a close friend endure several years of dialysis while waiting for a donation that did not come. Other complications followed, and we watched a healthy, active member of society deteriorate into a person whose quality of life was measured by "How do I feel?" after a session of dialysis. Towards the end of his life, he wanted to die.
I am sure we all have incredible stories of people we know or knew. The sad reality for me is to know that many from my community have poorer life chances because of lack of awareness about being donor card holders. At least under the presumed consent system, unless someone decides to opt out, the family and medical teams would not have to agonise so much over the difficult decisions they face today. I have been told stories of people who have gone to the Indian sub-continent to purchase organs, particularly kidneys. They have sought out poor families in desperate need of financial help. They are so desperate that they are willing to bypass the many crucial tests needed for matching.
I had not really thought long and hard about kidney donation until the loss of my dear friend. I hope that the Bill will be much strengthened and that, if nothing else, the Government will take greater steps to ensure greater public awareness.
Baroness Golding (Labour)
My Lords, I congratulate the noble Baroness on bringing forward the Bill. I understand her frustration when she thought that presumed full consent was not going to be available in the near future. However, I am sure that the Prime Minister's statement at the weekend has given her hope, as it has given me.
As many noble Lords will know, my youngest daughter developed diabetes when she was four and a half. This year, she had to have both her legs off. I thought I would come here today and put forward arguments that nobody could deny about the need for full presumed consent. I thought my arguments would be so strong that nobody could deny them. The facts and figures would all be there. Then I rang my daughter this morning, and she was yawning. I said to her, "You could do with a lie in, Janet". She said quietly and simply, "Mum, I can never have a lie in". Those words brought home to me what it must be like to be attached to a machine all night and every afternoon. How you are restricted in what you can do and where you can go. How you think, "Why I am here? Why can I not do these things?" Yet she, like so many other brave people, knows that out there there is somebody with a kidney that would give her hope and more freedom who would, if asked, give a kidney to enable her to have a fuller life. She and other brave people like her are my reason for wanting full consent. I do not need any other.
Lord Rea (Labour)
My Lords, in thanking the noble Baroness for introducing the Bill, I apologise to her for missing her first few remarks because business moved a little faster than I expected.
As all noble Lords who have spoken have pointed out, the Bill tackles an important health problem involving the unnecessary deaths of approximately 1,000 potentially treatable people every year, 400 of whom are on the waiting list for transplants. There have been several debates in your Lordships' House on this issue, most recently that initiated by my noble friend Lord Hughes of Woodside in July 2005 and the debate on the amendment moved by my noble friend Lord Chandos during the passage of the Human Tissue Act. There have also been many Parliamentary Questions in both Houses.
Until very recently, the Government have been unwilling to move from opting in to opting out—presumed consent—for organ donation. However, there has now been a change following the Chief Medical Officer's plea in his most recent annual report for the introduction of presumed consent as soon as possible, and following a change of Prime Minister. The Bill is thus very timely. It coincides with the publication of the first report of the Department of Health's Organ Transplant Taskforce. However, that report does not at this stage advocate a change to presumed consent, which the Bill does. The task force is now engaged in a widespread consultation on the question of presumed consent. The results will be published later this year and are expected to back a change to presumed consent. This will require legislation that has some of the same effects as the Bill, but will be brought in only after groundwork is done to ensure its successful operation. This groundwork is described in detail in the task force's report, and I will say a little more about it later.
It would be interesting to know whether the Government felt that they could use the noble Baroness's Bill, amended as necessary, as a basis for the legislation that they will require perhaps a little later this year to make the change to presumed consent. One obvious amendment is the one that has already been suggested—including all organ transplants, not only kidney transplants, in its remit. The task force report mentions that eight different organs are currently transplanted, although kidneys will remain the most numerous organ involved.
The need for all forms of transplantable organs is likely to increase as the average age of the population increases, but end-stage renal failure—the reason why kidney transplantation is mostly required—is increasing particularly rapid, largely as a consequence of diabetes, which is on the increase, as the noble Baroness explained. This is in association with the rapid increase in obesity, and in this connection it will be extremely interesting to know when the Government will come up with their full response to the Foresight report on obesity, which has recently been published.
As the noble Baroness, Lady Verma, has said, our immigrant population is particularly susceptible to diabetes and renal failure, particularly when they move to a more affluent western-style diet. This particularly affects those of south Asian origin than of west African and Afro-Caribbean origin, whose kidney failure is more often due to their higher prevalence of hypertension than diabetes. At present, there is a lower than average kidney donation rate from those communities, as she has pointed out. The number of people on the transplant waiting list is going up steadily, from 5,248 in 1997 to 7,234 in the last year for which there are figures, while the number of transplants has remained level or has fallen slightly from 2,527 to 2,385 over the same period.
Other countries, particularly Spain and the United States, have a much better donor rate than the UK. Spain has a rate of 35 per million of the population, while the UK has just 13—about a third as high. It is figures such as these that have belatedly led the Government to act. In its recommendations, the task force has benefited from the Spanish experience and has followed the trend of some of its policies. In a nutshell, the recommendations build on the work of UK Transplant—a division of NHS Blood and Transplant, which is responsible for managing transplant waiting lists—and that of the UK Transplant Support Service Authority, and suggest strengthening them by creating a UK-wide organ donation organisation that is centrally funded to eliminate competition for funds with other services provided by PCTs and acute care trusts, which has been a problem and has led to the uneven provision of transplantation services throughout the country. Crucially, among many other detailed recommendations is the suggestion that each acute trust should formally appoint a consultant-level clinical champion who,
"will be responsible for developing and implementing local policies to maximise donation, ensuring that all appropriate staff receive necessary training, and reporting donation activity to the Trust donation committee",
"Every acute Trust should establish".
It is interesting that in Spain it has never been necessary to remove an organ from a donor without the consent of relatives or friends, despite there being presumed-consent legislation. In this instance, it would be interesting to know how many organs are removed from deceased persons in Spain when the relatives cannot be contacted. In this country, organs are wasted because the permission of relatives is required. In Spain, despite the presumed-consent rule very seldom having to be applied, the attitude of the Spanish public has changed as a result of the change of policy to being that organ transplantation should be regarded as the norm, and even welcomed as a gift of life to another that compensates to some extent for the loss of a loved one.
The noble Baroness's Bill has stimulated public discussion of this vital issue—a discussion that needs to become more widespread as the campaign to boost organ donation gets under way.
Lord Brooke of Sutton Mandeville (Conservative)
My Lords, the noble Baroness, Lady Finlay of Llandaff, who is an admirable activist on a series of health-related causes, not only deserves our thanks and congratulations but has been serendipitous in her timing. I realise that there may be a "post hoc ergo propter hoc" issue to this, but the week preceding the Bill that we are debating today has seen: the Prime Minister coming out for presumed consent in the Sunday Telegraph; the wide reporting of his views on Monday—I am not quite sure whether they count as an initiative, but they certainly advertise the work of the task force that will report in the summer; Libby Purves in the Times on Tuesday; the first task force report—to which the noble Lord, Lord Rea, has been speaking—on the ancillary issues on Wednesday, which was welcomed by the BMA; a Times first leader; and Dr Stuttaford on Thursday. I am sure that there has been similar coverage elsewhere.
All of us participating in the debate today also owe to the noble Baroness the briefing that we have received on the occasion of the Bill from interested parties. Only its ubiquity and familiarity to other noble Lords and noble Baronesses participating causes me not to mine it today, but I shall give one vivid illustration close to home of the crisis that the Bill seeks to address. In our debate, to which the noble Viscount, Lord Chandos, referred, on the Human Tissue Bill in 2004, our late and lamented colleague Lord Biffen spoke—and from the perspective of a dialysis patient. I happen to know that he was at that moment completing his autobiography. Anyone who read a long piece by him in Times2 a year or so back on the Home Guard in Somerset in World War II, in which he had participated, will know what a joy that autobiography would have been. At intervals between then in 2004 and his recent death, I asked him if he had found a publisher. I shall long be haunted by his reply that the fatigue and weariness from dialysis had robbed him of the energy to make the effort. That is an index of the kind of opportunity cost that we are discussing, and although it would be hyperbolic to say that we have collectively failed a great fellow parliamentarian and the best Leader of the House of Commons in living memory, it is a pointer to how important it is that we solve the transplant donation gap.
The fact that refusals by relatives has gone up from 30 per cent to 40 per cent in the past decade is sad and even ominous. Although I am not going to draw heavily on the briefing that we have received, whether on statistics or otherwise, I must say that we are also in debt to the Chief Medical Officer, whom the noble Lord, Lord Rea, also quoted, prior to his 2007 call for the concise and lucid summary of the nine key facts on organ transplants, which he gave on page 27 of his annual report on the state of public health in 2006. They do not seem to have changed much, if at all, in the past couple of years, and I commend them as a synopsis of the issues. In the context of the speech of my noble friend Lady Verma, I cite his seventh key fact:
"Black and minority ethnic groups are in double jeopardy because they have more need of organs but a reduced pool of donors".
I understand the relevance of presumed consent and the BMA's enthusiasm for it. I shall look forward to the task force's second report on it in the summer, but my particular support for that agenda is that it will keep the spotlight on the total issue, as the Bill does today.
In the mean time, I hope that the ramifications of this week's first report will also be powerfully pursued. There is still too much ignorance, especially of the implications. While I would not go so far as the Chief Minister in a populous Indian state who insisted that all his Ministers mention HIV/AIDS in every speech they made wherever they spoke in the state, I can report the editor of a local paper in Northern Ireland telling me that he had moved from being the music correspondent on the Belfast Newsletter in protest at being asked to introduce a hostile reference to the Anglo-Irish agreement into every music criticism he wrote. The more that the Government can use such relevant—I stress, relevant—forms as we fill in every year to remind of us of the issue and to seek our written consent or dissent, the better. I applaud the BMA for the fact that its enthusiasm for presumed consent is balanced and tempered by its insistence that the opt-out option should also be highly visible.
I should confess that I have always carried an organ donor card but that I would not at this moment know how I should go about putting myself on the national donor register, although I dare say that I could find out online. I shall quote one statistic if only to provide a particular illustration. In the presumed consent debate, one piece of evidence is the detailed regression analysis comparing 22 countries over 10 years, including determinants that might affect donation rates, which concluded that presumed consent countries have roughly 25 to 30 per cent higher donation rates than informed consent countries. As the noble Lord, Lord Rea, cited, it is well known that Spain has the highest donation rate.
Those in your Lordships' House who went last year to see Dame Diana Rigg at the Old Vic in a Spanish play translated from a much respected Spanish film will recall the opening scene of citizens in a hospital group being coached on how to be organ donors very shortly before a central figure is killed in a road accident. That very centrality is an index of the manner in which the issue has taken root in Spanish culture.
I hope it is clear how supportive I am of the efforts of the noble Baroness, Lady Finlay, to maintain the momentum. It was a pleasure for me to follow the noble Lord, Lord Rea, who I see as a bassoonist: the more noise on the issue, the better, on whichever side of the arguments the noise comes. I take final encouragement from the fact that the BBC "Today" programme Christmas poll in 2003 on the Private Member's Bill that listeners would most like to see, had, as its second choice, a Bill on the very issue we are debating today.
Lord Hughes of Woodside (Labour)
My Lords, I join all those who have welcomed the noble Baroness's initiative in bringing this Bill forward. If one thing is unanimous in this House, and probably the other place and the country at large, it is that something must be done to improve the rate of organ transplants. At this early stage in my speech, I am sorry to enter a discordant note. I echo the concerns of my noble friend Lord Chandos about the Bill being too narrowly drawn. It is too narrowly drawn in two respects. First, under its provisions, it requires only one kidney to be taken. Secondly, and perhaps more damagingly, I am advised by the Public Bill Office that it cannot be amended to increase the range of organs. Therefore, the suggestion made by my noble friend Lord Rea on a way forward for the noble Baroness's Bill, which the Government could pick up on for change, cannot happen. For those in the country who feel that this might be a way forward, or perhaps might seek to condemn the noble Baroness's Bill because it could be used in this way, this is not a Trojan horse Bill. It concerns simply kidney transplants. It is none the worse for that, but those are my concerns.
The facts and figures have not changed much over the years. In 2005, 90 per cent of the public agreed with the principle of organ transplants. Only 20 per cent had registered as donors. The figures still are that 90 per cent of people agree with organ transplants and that registration is 23 per cent. In that respect, all the discussions that we have had and all the problems that have arisen have not increased the rate of donation, which shows that we need to go further than simply having registered donors. The waiting list has increased to 8,000 from 6,000 two years ago. We are on a sliding scale in which the problem is becoming more difficult as each year passes. In addition, we have only 3,000 transplants a year, including 600 live donor transplants, which were unthought-of only a couple of years ago. Those are on the increase, but they will not solve the problem.
We have to do something. We all welcome the Organ Donation Taskforce report, which makes 14 recommendations on what might be done. It did not consider presumed consent, although I understand that there will be a report in the summer on the position. That should be done as quickly as possible. Several members have referred to the excellent brief provided by the BMA. I shall not weary the House with the number of points that it makes about how the argument in favour of presumed consent has moved considerably. There are far more people now in favour of presumed consent than there were. We should welcome that and should continue at all levels to push the case.
I should like to dwell a little on the issue of taking one kidney under the Bill. I do not know enough about the theory of mathematics applied to one kidney versus two kidneys in terms of producing more kidneys. The noble Baroness's argument is that her Bill will increase the number of kidneys available. I am not sure whether that will happen. I am concerned that there would be confusion if this Bill should reach the statute book. Those who are at the sharp edge of persuading relatives to give their consent would have to say that one kidney can be taken. They might reply, "Why give another?". If you can get one without any difficulty, why not stick with one? Would it be possible for the law of diminishing returns to apply? I do not know, because I do not know the dynamics of the methodology of kidney or organ transplantation. I do not know how that works. I am concerned that if the Bill should reach the statute book, this confusion would arise, which is the last thing we need. We need clarity. I say to the noble Baroness, not in any spirit of antagonism but simply to advise her of my position, that in Committee I will table an amendment to delete the word "one" and insert "two". We would be able to continue the debate and avoid confusion. The task force is to report in the summer on presumed consent and we all hope that it will come down in favour of it.
I very much welcome the initiative of the Prime Minister. It has bought acres of space in the press, which none of us could hope to achieve. I notice that in some quarters he has been accused of doing a U-turn. I would not have thought that was an accusation that should be levelled at someone who decides to change his or her mind in order to improve the medical condition of people at large. Unfortunately, negativity appears to be the rule of the day. I must not be diverted. My final question to the Minister is, given that we expect the transplant task force to come down on the side of consent, will she say what work is being done so that we will have the legislation as quickly as possible?
I finish with the words of a dear late friend of mine, Archbishop Trevor Huddleston, about a different context. When he was railing against those whom he felt were not attacking the apartheid system strongly enough, he used to say, "Words, words, words; I've had enough of words; what I need is action".
Lord Sheikh (Conservative)
My Lords, the concept of organ transplantation has developed worldwide and, over recent decades, we have witnessed a significant increase in the number of organ transplant operations undertaken. The issue of organ donation must register as one of the most important challenges in the area of health policy and delivery. In the United Kingdom, around 7,500 people are waiting for an organ transplant and some 400 people die each year waiting for a transplant, including 100 children. These are frightening statistics and we need to consider how best to try to reduce those numbers.
Organ transplants are good and have saved countless lives, including making considerable improvements to the quality of life for many patients. For example, a kidney transplant can release patients from the inconvenience and discomfort of undergoing dialysis for as many as three sessions per week, a process that can take quite a few hours, and, unfortunately, the condition can be life-threatening. It is therefore imperative that we increase the number of donors and achieve that by effective persuasion and setting up suitable mechanisms.
In December 2006, the Department of Health established an Organ Donation Taskforce, with the remit of investigating the barriers to donation. I understand that the Government are now in possession of its report and recommendations, which were published on Wednesday. Notwithstanding that, the Minister will want to consider the content and the detail of those recommendations. I hope that this debate will provide a platform for the Government to furnish us with some feedback.
There is a contradiction between the language that we use and what is in this Bill. A donor is, by definition, one who chooses to donate. Donation is, by implication, a voluntary act. The Bill seeks to turn volunteers into conscripts and, whether or not that is the underlying purpose of the measure, it is offensive and wrong. People should be encouraged to donate their organs, but the ultimate decision must rest with the individual, and the fundamental presumption must be to respect the human body unless an individual has chosen to make his or her organs available for donation.
The debate today focuses on one fundamental point: whether we should work on the basis of explicit consent, under which a donor must specifically authorise the removal of an organ, or presumed consent, under which the onus is on individuals to state explicitly that they do not wish to have an organ removed. I strongly take the view that there is something profoundly wrong with the principle of presumed consent.
There is a weakness in the Bill as it refers only to an advance decision known to next of kin. It says nothing about asking the next of kin after death. Furthermore, it will not take long before a suspicion arises that doctors will not do all that they could to save a life, but will allow a death for harvesting purposes. Yesterday, I was informed by a coroner that he was dealing with the death of a young person in a road crash when the deceased's mother raised this very question before the inquest. We are not, therefore, talking about a theoretical fear.
The Bill refers to kidney donation, but we should also consider the potential consequences relating to other organs. Once the principle of presumed consent for kidney donation is established, that may result in pressure to include other body organs. If the Bill is enacted, this will be the thin end of the wedge. It is, therefore, necessary that donation is looked at for all body organs and whatever is agreed must apply to all organs.
I chair the Ethnic Diversity Council of the Conservative Party and I respect the beliefs and principles of all religions. The British population is now made up of people of different religions. I would like to explore, for a few moments, the cultural side of this debate. To my knowledge, the five major faiths in the United Kingdom do not object to the principle of organ donation. Christians, Jews, Muslims, Hindus and Sikhs have all endorsed organ donation and transplantation. That is not to say that there is not a lively debate within particular groups, but it might be helpful if a more robust lead were demonstrated by religious leaders so that ambiguities that might exist within their particular faith were cleared up.
My understanding is as follows. A Christian who chooses to donate an organ is following the example set by Jesus of demonstrating love. Sacrifice and helping others form a key part of Christianity and, in the Bible, Christians are invited by St Matthew to "freely give". Jews are required to obtain consent from a competent rabbinic authority before any organ donation procedure can commence, but nothing in principle in Judaism conflicts with organ donation in order to save lives. Jewish law prevents the unnecessary interference with the body after death and requires immediate burial of the complete body. In Islam, violating the human body is normally forbidden, but it is permitted to save another person's life. Indeed, the Holy Koran states in chapter five that,
"whosoever saves the life of one person it would be as if he saved the life of all mankind".
"Daan" is a word in Sanskrit for donation, which means selflessly giving to a Hindu. That is the third of the 10 niyamas, which are virtuous acts of the faith. Actions that sustain life are accepted and promoted as dharma, which means righteous living. Hindus believe that the soul is invisible, and that it is wrong to grieve for the body. A key feature of Sikhism is the requirement to put the needs of others ahead of one's own requirements. As with most of the other religions, the soul of an individual is separate from the physical body, and Guru Nanak taught, in the Guru Granth Sahib, that:
"The dead sustain their bond with the living through virtuous deeds".
I recognise that there is work to be done in persuading more people to donate their organs. The Chief Medical Officer's annual report in 2006 quotes surveys showing that around 70 per cent of the population favour the principle of donating their organs after death, but only 20 per cent of people are on the NHS organ donor register.
The best way to combat what can be described as a transplant crisis is a robust, proactive and continuous programme encouraging more people to be donors. This programme needs to be adequately resourced by provision of funding and staffing, and in all other ways. We should encourage more people to be donors of various organs and suggest that the matter be discussed by the potential donors with immediate relatives. About 40 per cent of families refuse consent for organ donation even where the individual has offered their organ as a donor. In addition, we must enhance and resource organ retrieval and transplant teams who are available at all times and appoint more donor liaison officers. These people need to be adequately trained to handle sensitive issues suitably.
I have just returned from the Indian sub-continent, and of interest at all margins of this debate is the issue of westerners travelling abroad to obtain organ donations and the practice of purchasing organs for transplant. There are abuses relating to this practice and I have heard a number of horror stories. I find organ trafficking repugnant, and tackling the problem of scarce supply may reduce the demand for this abhorrent practice. I repeat, however, that using the strong arm of the state and the force of statute to achieve more transplants is not acceptable. I urge the House to reject the Bill.
Lord Elder (Labour)
My Lords, there can rarely have been a week when the issue of transplantation has been more widely discussed. I certainly welcome that. To start with, I very much welcome the Prime Minister's statement last weekend, followed by the committee's report and, now, by the Bill before the House. I join others in thanking the noble Baroness, Lady Finlay, for introducing it and particularly for the time and energy she has spent discussing with us why she produced the Bill in this way, which those of us who discussed it with her found helpful.
The balance of the debate has clearly been that most of us would like to get to a position, at whatever speed we get there, of presumed consent. In a sense, the issue before us is what route we take. At this stage of a debate most things have been said, so rather than repeat them straightforwardly I shall comment on three of the contributions. First, my noble friend Lord Rea set out the kind of infrastructure that is required regardless of whether one opts in or out, and he quoted this week's committee report on the subject. We can get too caught up in the opt-out/opt-in argument. If we have the right kind of infrastructure, support and transplant co-ordinators in hospitals, it would make a great difference in the availability of organs. That was a helpful contribution.
Secondly, the noble Lord, Lord Brooke, talked about the means of increasing the number of those signing donation cards. I have known Lynne Holt, the transplant co-ordinator of the Freeman Hospital in Newcastle, for 20 years, for the simple reason that she was the transplant co-ordinator when I had my transplant. Speaking on behalf of Transplant Sport UK—an organisation with which I have some association, in what I assure noble Lords is an entirely non-participatory capacity, as I was privileged to be the patron of the very successful Transplant Games in Edinburgh at the end of last year—she has pointed out that, whether we have opt-in or opt-out, the biggest impact that could be made to the availability of organs is for people not just to sign cards but to sign them and to speak to their next of kin and friends and say: "This is what I want and I expect you as my next of kin to do everything you can to ensure that it happens". That would make a bigger and more immediate impact than anything done through the legislative process. I very much hope that we start increasing the pressure for that kind of discussion within families and groups, so that people really understand that that is what someone who has signed a donor card absolutely wants.
In response to my noble friend Lord Hughes, I have not had the benefit of a discussion with the Public Bill Office. If he says that it is not possible to extend the Bill beyond kidneys, I accept and understand that. What needs to be done—and I think this is what the noble Baroness was saying—is, if possible, to amend the legislation not to cover other organs but to extend the conversation about transplants. Even if there were no changes to the Bill, initiating such a discussion would be likely to lead to further discussion about other organs. That would be a helpful start to increasing discussions of this difficult process.
Should the Bill, judged in that context, be seen as helpful? I understand why one or two people might take the view that it is not. Perhaps I may go through some of the points that have impressed me. The Bill is, first, an honest and real attempt to deal with the awful issue of people going abroad for organs. Such a practice is bad for those going abroad and very bad for those from whom they are getting the organs. A serious attempt to stop that is desperately important. Secondly, were it to go through, it would start the conversation with people about transplants. On that basis, I hope that it would increase the availability of organs. On these two grounds alone the Bill is to be welcomed. I hope it might be possible to make it clearer—though, as I say, it may not matter—that the Bill is the start of the discussion and not limit the discussion solely to one organ.
I do not know whether the Government will be prepared to look favourably on the Bill. However, if they do not, I hope it is because they can see a route map in terms of developing discussions, trust and understanding which enable us to get to a position of presumed consent as quickly and realistically as possible.
I am grateful to the noble Baroness, Lady Finlay, for introducing the debate; it has been a hopeful and helpful part of the discussion. I personally would support the Bill, and will do so if I have the chance. We look forward with interest to seeing whether the Government have even more ambitious schemes ahead.
Lord Foulkes of Cumnock (Labour)
My Lords, I, too, welcome the Bill and congratulate the noble Baroness, Lady Finlay of Llandaff, although, like others, I have some reservations which I will come to later. However, I agree with others that it provides a good opportunity to discuss the general issue, and presumed consent in particular.
I have hurried back down from Scotland specifically to participate in this debate. Fortunately, I came by train; for a variety of reasons, that was well chosen. I was in the Scottish Parliament yesterday asking a Question of the First Minister, Alex Salmond, on this very subject. I am pleased to say that he agreed with me. When Alex Salmond agrees not just with me but with Gordon Brown, you begin to get the feeling that we are moving in the right direction—I certainly did. I am also pleased to follow my noble friend Lord Elder; I say "friend" not because that is the convention here, but because he is my friend and has been for a long time. He represents living proof of the value and importance of organ donation.
However, at this stage of the debate, the old saying is true: everything that needs to be said has been said, but not everyone has yet said it. I have two and a half hours of the debate left in which to indulge myself, but I can assure noble Lords, in particular the Whip, that I will not take advantage of that opportunity.
The noble Baroness, Lady Finlay, should be added to the roll of honour of people who, over the years, have raised this issue in Bills again and again. They are my old friend Tam Dalyell in 1971, and the late Lord Finsberg, the former MP John Marshall, the right honourable Kenneth Clarke MP, and my noble friends Tom Watson MP and Siobhain McDonagh MP. The inspiration for many of those Bills came from the BMA, and it is important that the initiative continues to be taken up by Members of both Houses.
I am impressed by the parade of statistics underlining the arguments that have been repeated in our debate. That is because I am a convert to this issue. I effectively voted against presumed consent when I was a Member of the other place, but I have been convinced by the arguments. The Chief Medical Officer has said that at least 1,000 people die needlessly every year for the lack of a transplant. That is a powerful argument. Moreover, the waiting lists do not reflect the real need for organs. Chris Rudge, medical director of UK Transplant, said in evidence to Sub-committee G of the European Union Committee:
"The organ donor rate and therefore the transplant rate in the UK is poor and it is static: it has not really changed for ten years or more ... The number of people who ... are on the waiting list is a very poor reflection of the number of people who ... need a transplant. Most transplant units limit the number of people who are put on the waiting list to an approximation of the likely number of organs that are going to be available ... There are probably thousands more patients a year—it is unquantified, but it is in the thousands and probably the tens of thousands—who would benefit from a transplant but are never placed on the waiting list".
Finally in relation to statistics, I pay tribute to the work of Mrs Elisabeth Buggins, chair of the Organ Donation Taskforce—I am sure she is fed up with the jokes about why she was chosen. As she rightly said in a press release on
"90% of the UK population supports organ donation and transplantation in principle—but only a quarter of the population holds donor cards".
That "aching gap", as the Prime Minister described it, is a strong argument for consent. So I have become a convert not just because I have known my noble friend Lord Elder for some time, but because of my old colleague, Sam Galbraith, who is another recipient of a transplant. He went on to contribute so much to the Commons and the Scottish Parliament, and of course through his work as a leading neurosurgeon.
It was at the launch of the Transplant Games, mentioned by my noble friend Lord Elder, that I became a cardholder and joined the register. Before that I had been part of the "aching gap". I spoke to a transplant surgeon at the games and said, "I am not sure that many of my organs will be of much use at this stage". He looked me straight in the eye and said, "Well, your eyes look quite good". I must say that the tone of his voice worried me slightly, but did not put me off signing the register. Since then I have had a number of meetings with the British Medical Association both in Scotland and London, and I pay tribute to its work and the pressure it has exerted on this issue. I have also had the privilege of being briefed by Department of Health civil servants who are working in this area, and again I pay tribute to them.
As a result of all this, I have tabled a Motion in the Scottish Parliament calling for a fresh debate on organ donation, which now has wide cross-party support, and next Wednesday evening I will be holding a debate in Holyrood. A peculiar advantage of being one of the two people who are Members of both the Scottish and the United Kingdom Parliaments is that I can raise issues at both levels. With that I come back to the question I put to the noble Baroness when I intervened during her introduction of the Bill. We need legislation that makes the same arrangements throughout the whole of the United Kingdom. That has been underlined to me again and again. Even the most fervent nationalists accept that the position should be the same everywhere because it is a universal arrangement. People from Scotland go down to Newcastle and there is a whole range of organ transfers throughout the United Kingdom, so it is very important that it is done on that basis.
I should also like to pay tribute to Scotland on Sunday. Week after week the paper has been arguing the case for transplantation in its campaign in support of presumed consent.
A point I recall from the debate in the House of Commons is the importance of ensuring that public opinion is behind a change in the law, and I am glad to see from the British Medical Association poll that that seems to be the case. Indeed, only the noble Lord, Lord Sheikh, has spoken against presumed consent in this debate. It seems that more and more people are coming round to this view. A number of Members of the Scottish Parliament who did not support presumed consent before have now signed my motion, and the more they look at the detail, the more they come round to supporting it.
The Spanish model has been very successful and is being followed in other countries. That scheme is not just about presumed consent, as others have said. It has a number of pillars: more transplant co-ordinators available 24 hours a day, seven days a week; they receive extensive training centrally; and there is better co-ordination both within and between hospitals. All that has accompanied the change to the legislation towards presumed consent. All that has been instrumental in bringing about a large increase in the number of donors in Spain. I hope that Sub-Committee G, which is looking at the question, might consider visiting Spain to see what the arrangements are like there and reporting back to the House. I am not a member of the committee, so I have no personal interest.
Like others, I have some reservations about the Bill. Why one kidney and not two, as my noble friend Lord Hughes asked? What about other organs? The noble Baroness, Lady Finlay, will have to check whether this Bill is amendable, because my noble friend believes that it is not. Also, the opt-out is really quite hard rather than the soft choice I would like to see. The category for those,
"with lasting power of attorney for personal welfare",
covers a very limited number of people who can refuse. The opt-out is a bit tougher than the noble Baroness indicated in her introduction. I do not support the Bill in this form, but I welcome the opportunity to discuss the issue.
As others have said, I am really delighted that the Prime Minister has given this change his personal blessing, and I understand and welcome the reasons why he has done it. There is an urgent need to advance towards presumed consent and I am glad that the Government have accepted all the recommendations made by the task force in its first report, and that they have now asked the task force to look at presumed consent. I hope that we will get an indication from the noble Baroness, Lady Royall, that the Government will move swiftly. I say that because every day that it is delayed, people will die needlessly. While I look forward to the change, I think that we all agree that in the mean time, everyone should do as I did when I attended the Transplant Games: they should sign the register and take the card—and do it willingly until such time as the law is changed.
Baroness Tonge (Spokesperson in the Lords, Health; Liberal Democrat)
I, too, congratulate the noble Baroness, Lady Finlay, on bringing the Bill to the House. As the noble Lord, Lord Foulkes, said, many bodies, patient organisations and professionals are calling for action on the organ transplant situation in this country. Indeed, the Liberal Democrats passed a motion calling for presumed consent at our annual conference in 2002.
I have a donor card—I have carried it for many years—and I am on the register. I can assure the noble Lord, Lord Brooke, that it is extremely easy to register. You do not need any numbers; you do not have to find your credit card; you do not have to look for anything. You can just tap in in a matter of seconds. I trust that he will do so. I sometimes think that I am too ancient to be of any use to anyone, but you never know; when I am dead someone might find a use for me.
We have heard about the problem. I will not reiterate the statistics, because many noble Lords have told us what they are. We know also from the noble Baroness, Lady Verma—I was very interested in her contribution—what a problem this is, particularly for the Asian community. I know that because I worked in Southall as a doctor for about 15 years. It is a huge problem for that community.
We know that people die waiting for transplants and that the majority of people in this country want more organs to be available for donation—and yet they are not. Why is that? We have heard many important speeches on this subject today but not enough have dwelt on the emotional aspects of it, although certainly the speech of the noble, Baroness, Lady Golding, did.
As I said, I have carried a donor card for years. My husband and I, who are both doctors, have often discussed the issue and my children and their spouses are all in favour of organ donation. It is an accepted thing in our family. Indeed, the daughter of a close friend had her life transformed by a kidney transplant about 10 years ago.
The speech of the noble Baroness, Lady Golding, left me feeling chastened and I have decided to tell my own story and to make a confession to the House. My daughter died after an electrical accident in her kitchen three years ago. She was rushed to the local casualty department and great attempts were made to resuscitate her. Sadly, she was not resuscitated. But it was over a year later that my husband, my children, my daughter's husband and I suddenly thought, "Could she have donated organs?". It took that long and I feel quite ashamed that it did not occur to us at the hospital. We certainly were not approached by any of the doctors in the department who had worked so hard to try to resuscitate her. This is the point at which we do not connect in this country and why the Bill is so important. It is almost impossible for exhausted doctors suddenly to think, "I have to talk about organ donation". It certainly never crossed my mind, yet I had my bag with me with my donor card in it. That is the important factor that we must consider.
Many relatives have found themselves in this position. For me it would have been a great comfort to know—it should be the same for other relatives—that the person whom I had created had given life to someone else. We must put that message out in our publicity. I think that it was the noble Lord, Lord Hughes, who drew attention to the publicity that the Prime Minister achieved for the issue earlier this week. I, too, congratulate the Prime Minister. It has been a wonderful week for getting the debate going.
The Department of Health task force reported this week with measures that it hopes will increase the number of organs offered for donation, but it will be the summer before it reports on the subject of this elegant Bill, the presumed consent for donation. Organs will be taken from a suitable dead person by the transplant teams unless specific instructions have been left not to permit it or the relatives object. These are simple safeguards. There will be no coercion; the noble Lord, Lord Sheikh, should be comforted by that. It will of course be subject, as the noble Lords, Lord Rea and Lord Elder, pointed out, to suitable staff being on site in all trusts to make sure that this happens.
The noble Viscount, Lord Chandos, was not happy that we should confine this Bill to kidneys. I think that it is an elegant Bill because it does confine itself to kidneys. Another of the emotional aspects that we have not discussed very much is that people do not get too emotional about their kidneys. They may get emotional about their heart—although, perhaps, medical people do not, because for them it is a pump that, we hope, works for as long as we want it to—and some of my children are emotional and sensitive about their cornea and about their eyes being used for transplant. I keep explaining to them that it will not be until after they are dead, but one of them said, "Oh no, I can't bear eyes"—they get funny about it. However, you do not get that reaction to kidneys. Everyone knows someone who needs a kidney transplant; everyone reads about the trade in kidneys to which the noble Baroness, Lady Finlay, referred; and everyone knows that we have two kidneys and that if we remove one we can perfectly well go on living with the remaining one. So people are not emotional about kidneys.
The Bill is elegant because the subject is confined to a single set of organs; people can debate it freely and not get upset when they talk about it. If the Bill passed through Parliament, that would increase the debate on organ transplants generally and, I hope, prepare the way for the Government to introduce presumed consent for all organ donation. That is the way we should go. It is a much more positive and active approach to organ donation than simply waiting. Let us do this in stages.
This happens already in Spain, as we heard from the noble Lord, Lord Foulkes, but we have not heard the statistic that in Spain 33.8 organs per million of the population are donated, whereas in the UK the figure is 12.9—one-third of the amount in Spain. Eighty-five per cent of relatives approached in Spain confirm that they do not mind their relative's organ being used; only 15 per cent refuse permission. That is a useful statistic to keep in mind.
The gift of life to another must be the greatest legacy that we can leave when we die, apart from our own children and grandchildren. The Bill is at least the beginning of the process of raising public awareness and at most, if passed, would save thousands of lives. I beg your Lordships to support it.
Lord McColl of Dulwich (Shadow Minister, Health; Conservative)
My Lords, I, too, thank the noble Baroness, Lady Finlay, for introducing the Bill. Whatever happens to it, it will, as the noble Baroness, Lady Tonge, just said, continue to stimulate the debate. I hope that it will have the desired effect.
I declare an interest. Inevitably I am biased; I used to do kidney transplant operations and I well know how such an operation can completely transform the life of someone in renal failure. The quality of life is so much better than life on renal dialysis. Of all the operations that I have done and am still doing, kidney transplantation is by far the most thrilling. One is presented with a cold, lifeless-looking donor kidney from some part of this country or flown in from any part of Europe. One connects the artery and vein to a large artery and vein in the lower abdomen and, when one takes the clamps off, this lifeless thing springs to life. It is a most amazing sight.
One of the curious features used to be that French kidneys would start passing urine immediately on the table before the ureter was even plumbed into the bladder. I was curious to know what it was about the French kidneys that made that possible. An immediate explanation was that it was French wine; after all, wine is a diuretic. In fact, the explanation was quite different; the French surgeons were taking the kidney while the heart was still beating and therefore it was in much better condition. That was during a time when there was a lot of discussion about the determination of brain stem death. That whole problem has now been resolved, leaving no doubt about when brain stem death has occurred.
Removing organs for transplantation, as the noble Baroness, Lady Finlay, and others said, can be a wearing and upsetting affair. Imagine a surgeon operating on a patient who becomes brain stem dead and whose kidneys are probably suitable for transplantation. The relatives have to be told of the death of their loved one and then they are asked whether the patient's organs can be removed for transplantation. It is an extremely fraught situation that requires great understanding, sensitivity and skill, and it puts great pressure on the staff, as I know from personal experience. Those pressures are much better managed nowadays, but there is still the persistent problem of a great shortage of donors, as all speakers have mentioned.
The noble Baroness's Bill would allow one kidney to be taken on the basis of presumed consent. I fully understand the rationale for that. There are, however, some problems. Ninety per cent of people are in favour of organ donation in principle but the actual donation rate remains poor, partly due to the 40 per cent of relatives who refuse. The reason behind the Bill is presumably that asking for only one kidney might persuade some of the 40 per cent of the unwilling relatives. However, a survey in March last showed that, of the more than 14 million people on the donor register, 89 per cent were ready to donate all their organs and only 0.7 per cent stipulated that only the kidneys could be taken. That might indicate that asking for only one kidney might not yield more donors, as the noble Lord, Lord Hughes, said. However, as the noble Baroness, Lady Tonge, said, some people are averse to having particular organs, such as the cornea, taken.
I very much like the suggestion of the noble Lord, Lord Elder, that when somebody signs a donor card they should have a go at their relatives and make sure that they understand that the request is genuine and do all that they can to make sure, if the occasion arises, that donation takes place.
I believe that the situation has been radically changed this week by the report Organs for Transplant. It is an absolutely brilliant report, outstanding in every way. On Tuesday morning, when it was presented to the stakeholders, everyone was very excited and supportive. Universal approval is not always the case in medical circles. Everyone associated with the report is to be congratulated. I am sure that the task force is right when it estimates that its 14 recommendations will produce a 50 per cent increase in donations. That will mean an additional 1,200 transplants a year.
I am well aware that medicine and prophecy and two quite separate subjects, but such is the sound reasoning and practicality of these recommendations that I am sure they will work. They are based on what has worked so well in Spain. The first three recommendations are simply part of good management. Recommendation 4 is one of the most important. It stresses:
"All parts of the NHS must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this".
That is a very important recommendation indeed. Recommendation 5 says:
"Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis".
The sixth recommendation will, I hope, be national and be monitored nationally. It says:
"Donation activity in all Trusts should be monitored. Rates of potential donor identification, referral, approach to the family and consent to donation should be reported".
The seventh recommendation says that brain stem death testing,
"should be carried out in all patients where BSD is a likely diagnosis, even if organ donation is an unlikely outcome".
Again, I think that that is very important. The eighth recommendation is also important from a financial point of view. It says:
"Financial disincentives to Trusts facilitating donation should be removed through the development and introduction of appropriate reimbursement".
Many noble Lords have said that the extremely important network of donor transplant co-ordinators should be expanded and strengthened, as stated in Recommendation 9. Recommendation 10 is about establishing a United Kingdom-wide network of dedicated organ retrieval teams. The report then talks about training. The last recommendation, which is for guidelines to be given to coroners, is very far-sighted. The practice of coroners varies enormously throughout the country, so guidelines could be a great help.
I am happy that soft presumed consent has been omitted from this splendid report and I was glad to hear that the task force will examine it. I am aware that this is the law in Spain, but no one makes use of it. It has been argued that having the law in place would make it easier to ask relatives for organs. My party wishes to leave the law in the United Kingdom as it is for the time being and to wait for the great improvements that we can expect from the implementation of the task force's recommendations.
Baroness Royall of Blaisdon (Baronesses in Waiting, HM Household; Labour)
My Lords, I, too, congratulate the noble Baroness, Lady Finlay, on bringing this vital issue to the attention of the House by means of her Bill, which clearly has in mind the interests of those who require donated organs. She was right to highlight the critical shortage of deceased donors in this country. The Government are committed to increasing the number of organs available for transplantation, so that more people can benefit from this life-saving procedure.
We recognise that the noble Baroness has brought forward the Bill to ensure that more people have the gift of life. However, the Government have reservations about it. It is unclear how its proposals would deliver real benefits for all those people who are awaiting vital transplant surgery, and it raises significant issues for professionals involved in donation, as well as donors and their families, which would need careful consideration. The Bill's provisions on consent are premature in view of the debates and the work of the task force.
Noble Lords will be aware that the Secretary of State for Health announced earlier this week the report of the Organ Donation Taskforce, and made a commitment to implementing all its recommendations. The noble Baroness, Lady Verma, mentioned Professor Randhawa. He is a member of the task force, so I hope that the noble Baroness is reassured that problems relating specifically to black and Asian communities are being properly addressed. I take this opportunity to pay tribute to organisations such as the Kidney Wales Foundation, which, as well as doing a fine job in other areas, is targeting specifically the black and minority-ethnic community in Wales.
The measures to be put in place as a result of the task force's work will greatly improve donation rates for all organs. The task force estimates that an increase of 50 per cent should be achievable within five years, which would equate to an additional 1,200 transplants each year, of which more than 700 would be kidney transplants. In the shorter term, it is hoped that a major difference in terms of transplants enabled, and therefore lives saved, could be seen in as little as a year to 18 months.
In addition, the Prime Minister has indicated that now is the time for a public debate on whether we should move to an opt-out system for consent. This is a sensitive issue, and we will seek views from all those with an interest—the public, transplant professionals, patient groups and religious leaders—so that we can hear a wide range of opinion and concerns. To facilitate this debate, the Secretary of State for Health has asked the task force to consider the potential impact of changing to an opt-out system.
I pay tribute to Elisabeth Buggins and all members of the task force, who have done a fantastic job in drawing up workable recommendations for improving organ donation rates. I am delighted to assure noble Lords, including the noble Lord, Lord Sheikh, that we have been able to commit to taking each of the recommendations forward.
The task force will now turn its attention and considerable expertise to advising us on the issues involved in an opt-out consent system. It had its first meeting on presumed consent yesterday. Such a system would of course be a fundamental change to current practice, and require significant amendment to the Human Tissue Act 2004, which makes it an offence to remove an organ for transplantation without explicit consent of the donor or someone qualified to consent on his or her behalf. Many complex practical, legal and ethical issues may need to be considered before we can decide whether such a step would work in the UK, which is why it is important for the task force to conduct a thorough investigation before considering any change to the law in this area.
Many noble Lords cited the experience in Spain, which has seen a sea change in attitude and practice. My noble friend Lord Rea asked how many organs were taken in Spain without the family's consent. Like him, my understanding is that the usual practice there is to get consent from the family in all cases, but I shall write to him when we have sought the information that he requests from the authorities in Spain.
The Government believe that the Bill before us is premature on two counts. First, the presumption of consent to remove any organ, in this case a single kidney, would be pointless unless the necessary organisational and systemic measures had been put in place to ensure that optimum use could be made of organs available for donation. The implementation of the task force's recommendations will achieve this, but not overnight, and it is vital that we proceed with that work to reap the benefits as soon as possible.
Secondly, it would be unwise to make changes to the system of consent without the benefit of the task force's findings on the implications for organ donation in the UK of an opt-out system and wide consultation. Many noble Lords have talked about the importance of public opinion and ensuring that the public are with us on such a sensitive issue. It is vital that whatever system is eventually put in place is fully thought-out and capable of commanding the confidence of both professionals and the public.
The noble Baroness explained why she confined the scope of her Bill to renal donation, but we are concerned that the Bill would treat kidney donation completely differently from other life-saving or life-enhancing transplants, and place practitioners seeking consent from family members for other organs, including the other kidney, in a potentially difficult situation. People awaiting a heart or liver transplant may well feel unfairly treated and, conversely, families of kidney donors may well wonder why everybody else has a say in what happens to their relative's body except them. The Bill appears to make no provision for the involvement of family members of adult donors, although the noble Baroness addressed that in her speech, and it is not clear how practitioners would be expected to proceed in the face of objection from the family of potential donors. These are sensitive issues at the very heart of the debate about consent. We must be wary of the potential to damage confidence in the system and cause confusion and mistrust—although I know that that is exactly what the noble Baroness does not want.
The Government are determined to see an improvement in the number of organs made available for all types of transplant, and to see that where donors are identified their organs are used to benefit as many people as possible.
Finally, the Bill as drafted would not dovetail with the Human Tissue Act 2004 or the Mental Capacity Act 2005 and would create legal anomalies, of which I will give a few examples. The proposed amendment in Clause 8 would simply not work: to remove this activity from the requirements of the 2004 Act would require significant amendments to Section 1 of that Act, which sets out the activities requiring consent, as well as amendments to other sections of the 2004 Act including those relating to offences and penalties. I note the noble Baroness's comments, but my understanding is that there is not the simple read-across from the provisions of the Mental Capacity Act that the Bill implies. The Mental Capacity Act applies to decision-making for people when they are alive and the Bill would come into play once the person was dead. This is a simple but significant distinction and the Government would need to think long and hard about the wider implications of changing this basic aspect of the Mental Capacity Act.
There are some specific issues in relation to the Mental Capacity Act that the noble Baroness may want to consider further. The Act applies to decisions to refuse treatment and not to donation, and does not apply after death. If it is the intention of the Bill to create a new category of advance decision relating to organ donation that applies after death, the Mental Capacity Act would need to be amended or provisions for a new form of advance decision would have to be drawn up. Similarly, the Bill proposes that someone with a lasting power of attorney can refuse donation on behalf of a donor. The role of lasting power of attorney applies only when the person is alive. As with advanced decisions, the Mental Capacity Act and the relevant regulations would need to be amended if it were proposed to allow someone with lasting power of attorney to make health-related decisions that endured beyond a person's death.
We have benefited from much expertise and personal experience in today's debate. There have been many moving testaments to the real need for action on this issue. I specifically cite my noble friend Lady Golding, whose personal experience with her daughter is a real testament for the need for swift change. The experience of the noble Baroness, Lady Tonge, also provides us with a real lesson about the need to act. There we have a family who were well aware of the benefits of organ donation, but who were not approached. There is much to do. We need action, action, action, and not just words, to misquote the archbishop.
The noble Lord, Lord Hughes of Woodside, asked what work was being done to ensure swift legislation. We appreciate the need for urgent action, which is why we have already accepted all the recommendations of the task force. It is too soon to say what form any change to the law might look like. As the Prime Minister made clear, we are at the start of the debate and not at the end. We need to ensure that we have consulted the public properly.
I feel rather proud that so many of your Lordships, including my noble friend Lord Chandos, have prominent roles in organisations relating to organ donation; indeed, we have the noble Lord, Lord McColl, with us who actually enables transplants—and we are very grateful to him for all his work. I was particularly interested to learn of his views on the pressures on staff. I believe that the task force's recommendations would ease those pressures.
The noble Lord, Lord Brooke of Sutton Mandeville, reminded us of the fine qualities of Lord Biffen and his experiences on dialysis. Both the noble Lord, Lord Brooke, and my noble friend Lord Elder mentioned the huge importance not only of signing donor cards but of speaking to the next of kin. The Government whole-heartedly endorse that.
The noble Lord, Lord Foulkes, referred to the situation in Scotland. I am delighted that both the Scottish Parliament and Westminster are thinking along the same lines on the issue. It is clear that while devolution should of course be respected, our aspiration in this area must be to have a UK-wide approach, and I am sure that that is what we are all working towards.
In conclusion, the Bill is clearly drafted with the best of intentions. The noble Baroness is quite right to raise the issue of the shortage of organs for donation, which is something the Government are determined to address, and I have alluded to the recommendations of the Organ Donation Taskforce, which I am confident will result in far more organs becoming available for future transplantation.
I have also mentioned that the task force will be considering the complex practical, legal and ethical issues relating to an opt-out system of consent for organ donation, and the need for a public debate on that sensitive issue. We must be sure that whatever system of consent we operate in the UK in the future is right for us, and has the confidence of both professionals and the public. The work of the task force will provide us with the evidence base needed to decide.
I am sure that the noble Baroness, Lady Finlay, will wish to reflect on these issues. In the mean time I thank her for bringing forward this Bill and for enabling this extraordinarily timely debate.
Baroness Finlay of Llandaff (Crossbench)
My Lords, I thank the Minister for her full reply and I certainly must thank all noble Lords who have spoken today, many of whom have shared their personal experiences and told extremely moving stories. The noble Baroness, Lady Golding, brought home exactly why we cannot wait. I am grateful to the noble Lord, Lord Elder, who underlined the point so eloquently made by the noble Baroness, Lady Tonge, about the need to talk to relatives and the need for these conversations to happen routinely. That has been the driving force, in a way, behind my Bill.
The Organ Transplant Taskforce certainly has made important infrastructural recommendations, to which the noble Lords, Lord McColl and Lord Rea, referred. They are absolutely essential whatever happens, wherever things go and however one decides. I will try to answer some of the points about the opt-out and the issue of one kidney.
The noble Baroness, Lady Verma, is right to say that only 3 per cent of organs come from the black and ethnic minority population. That group needs organs, yet it is the group with the greatest mistrust of authority. Many healthcare professionals come from this group and from a background and culture of inherent slight mistrust. They have been brought up in a culture in which people do not ask about this. So we have a double problem in those very areas where these people are living and working as regards making sure that the relevant conversations happen.
I say to the noble Lord, Lord Brooke of Sutton Mandeville, that three things inspired this Bill. The first was a friend who has now had a third transplant. I learnt through him the extent of the despicable trade in organs. This terrible trade exploits people but occurs only with kidneys. That is what prompted me to look at kidney transplants. The second thing that inspired this Bill was the report from the Chief Medical Officer and the third was conversations with my children. My daughter is a bassoonist, like the noble Lord, Lord Rea, and an accident and emergency trainee. It is very difficult for the relevant conversations to happen in the current climate given the pressures on junior staff when these patients are brought in. Nobody should underestimate the problems of asking absolutely shattered bereaved relatives for organs. It appears to me that asking for a kidney would be much easier and would begin to get the conversations going. That is why my Bill is framed as it is.
I have checked with the Bill Office about including a requirement, before taking a kidney or organ, to ensure that the local co-ordinator of transplant services has taken all reasonable steps to discuss with the next of kin the voluntary donation of other organs, including the second kidney. That is quite acceptable and within the scope of the Bill. So it is not a case of presumed consent for other organs. There are huge problems with presumed consent, which have been alluded to in the speeches both in favour of and against presumed consent. As for the Mental Capacity Act, I should be only too happy to delete the relevant section if that was appropriate and to strengthen by means of an amendment the conversations that have to take place with families.
Currently, we have 400 kidney donors, which gives us 800 kidneys. If the figure went up to 1,600 donors, which is way inside the figure that I have calculated as being available, we would have at least 1,600 kidneys. If a small number of those said, "Yes, and while you're there take the second kidney", that would solve a huge problem on the transplant register. I emphasise that more than 88 per cent of people waiting for an organ transplant are waiting for a kidney.
Why only one kidney? Pancreatic transplant is somewhat routine surgery now but the numbers involved are much smaller. There are emotional issues around heart/lung transplants, as they have to be taken from a heart-beating donor. Setting it up is much more difficult in terms of moving the body for the transplant to occur, which makes it a much harder ethical, logistical and emotional decision for people to take. There is certainly a phobia about eye transplants. Also, some people who have never drunk alcohol or taken drugs do not want to donate their liver because of issues connected with alcohol and drug damage that may have resulted in the liver failure of the recipient. There is that inherent fear and mistrust which was alluded to and which the noble Lord, Lord Sheikh, eloquently laid before us today.
There are questions about where a total opt-out would stop. What about faces? Where are the new frontiers? What would happen to neurological tissue? What could be taken? How would we define the boundaries? That is why I drew the boundaries so tightly around only one kidney. There are questions about an opt-out overall and about the possible loss of the database. I have followed conversations on websites after announcements in the press. That has made me cautious about how much the population is ready to accept total opt-out as opposed to a very limited opt-out. Sadly, there has been much misinformation about what any kind of opt-out would allow. I remind noble Lords that, although Spain has the softest of legislation, that legislation does not, so far as I have been able to ascertain, allow an organ to be removed unless the consent of the family is obtained. Of course you need the consent of the family to do it, because you must know about the person whose organ you are taking—what they have done and what diseases they have had during their life—to know about the suitability of that transplant. It would never work to have legislation that says that you can just go in and take an organ. I hope that I have made that clear enough in my Bill, but I completely accept the comments that have been made.
I hope that the Bill, if it does nothing else, will move the debate into the public arena a little more than has happened already, with all the publicity last weekend. I hope that it will begin to put in train support for those healthcare professionals who need to have the confidence, skills and tools to begin to have those all-important conversations. I will close with the words of the noble Viscount, Lord Chandos, who spoke immediately after me; something has got to be done. We must put words into action. He spoke about looking three years on; how many people are going to die in the next three years while we are waiting for words to be put into action? That is what precipitated me to do something now; because there are more people dying for lack of a kidney transplant than any other organ, and because transplantation of a kidney is so simple.
In the event that we got it wrong and that relatives came back from abroad and said, "My relative had wanted to opt out; my relative never wanted any organ to be taken", and you had taken one kidney because there was an element of doubt, but you felt that there were no objections, that person's body would at least be buried with all their physiological functions intact. Whatever we do, we must not stack up problems among the bereaved. We have several groups to consider. First, there is the person who has died and what they want. Secondly, there is the patient who is in desperate need of an organ, and they need it today—not tomorrow, next week or next year. Thirdly, we have the members of the bereaved family who live afterwards, possibly with regrets of different types. I thank the noble Baroness, Lady Tonge, for having called this an elegant Bill, and for having appreciated—sadly, she has had to experience this from both sides of the fence—why my Bill has been drafted as it is.
On Question, Bill read a second time, and committed to a Committee of the Whole House.