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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,

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

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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.)

11.31 am

Viscount Chandos: 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

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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.



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11.39 am

Baroness Verma: 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

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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.

11.45 am

Baroness Golding: 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.



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11.47 am

Lord Rea: 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

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move to a more affluent western-style diet. This particularly affects those of south Asian origin rather 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,

which:

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.

11.56 am

Lord Brooke of Sutton Mandeville: My Lords, the noble Baroness, Lady Finlay of Llandaff, who is an admirable activist on a series of health-related causes,

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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.


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