Organ Donation (Deemed Consent) Bill

Lord Lansley Excerpts

2nd reading (Hansard): House of Lords
Friday 23rd November 2018 Lords Chamber

[Lord Lansley (Con)]

My Lords, I am privileged to have the opportunity to speak following the noble Lord, Lord Hunt. I very much applaud the way in which he has brought the Bill forward and the way he presented it today. I thought he covered exactly the points that must be at the forefront of our minds in thinking about its implementation. It is my hope and expectation that the Bill will pass into law, and that it will have precisely the beneficial effects that its promoters have sought.

It might be helpful, at this early stage in the debate—I know we all share the objectives—to review the previous thinking about these issues, not least from the passage of the 2004 legislation that we are amending. The noble Lord, Lord Reid of Cardowan, was Secretary of State at the time of the 2004 Act. I was shadow Secretary of State in another place. My interest in these issues was not least as a constituency Member of Parliament, in that I represented both Addenbrooke’s Hospital, where clinicians led by Roy Calne did ground-breaking work in reducing the rejection of transplanted organ tissue, and Royal Papworth Hospital, which has the largest number of heart and lung transplants, and is where Terence English conducted the first UK heart transplant and John Wallwork and colleagues performed the first heart and lung transplant. So I was always closely concerned with and supportive of the transplant work they were doing.

In 2004, however, it was not concluded during the passage of the legislation that we should proceed on the basis of deemed consent. There were two parts to that. First, the evidence continued to be inconclusive that deemed consent itself was the principal issue in obtaining the necessary organs for transplantation. The noble Lord, Lord Hunt, referred to the Spanish experience, which was relevant and much debated at that time. We are going back some way, but those responsible for the system of consent in Spain took the view that an opt-out system was not the most important part of their experience in achieving the best transplant rates in Europe. A subsequent review was published in the journal Health Technology Assessment in 2009, so a little later. I was Secretary of State in 2010 and it was part of the thinking then. The conclusion of that systematic review across a number of countries said:

“Presumed consent alone is unlikely to explain the variation in organ donation rates between different countries. A combination of legislation, availability of donors, transplantation system organisation and infrastructure, wealth and investment in health care, as well as underlying public attitudes … and awareness … may all play a role”.


I am simply reiterating what the noble Lord made clear in moving the Second Reading today. All of those things matter.

In 2004, the noble Lord, Lord Reid of Cardowan, said that he did not agree with the principle of deemed consent because, across the National Health Service and healthcare, we were setting out to ensure that consent was enshrined in our activity and that we should not proceed except on the basis of informed consent. To deem consent, arguably, is to abandon that principle. In this instance, we have to recognise that we are treading across an important ethical boundary, and understand why and how we are doing it. It is not that we should not do it, but that we understand the importance of recognising it.

As the noble Lord said, there is a provision in the Bill that says that, where families can demonstrate a reasonable basis for thinking that the deceased person would not have consented to transplantation, they should not proceed. The question also arises of a family who has no evidence of what the deceased person may have said, but objects themselves. We need to think carefully about that, not least because of what I remember from talking to nurses involved in transplanting at both Addenbrooke’s and Papworth, during the passage of the legislation in 2003. They said they did not quite understand what an opt-out system really meant. What is the difference between, on the one hand, asking the family of somebody who has died whether they would consent to donation; or, on the other hand, saying that, although consent is deemed to have been given, we are none the less going to ask whether you agree or object? They found it difficult to understand the difference.

In practice, we should recognise that there is a difference in terms of public attitude and awareness. I think that was demonstrated in Wales, and I look forward to hearing from the noble Baroness, Lady Randerson, about the Welsh experience. In the first year or so, it was not evident, because the numbers were small and the period of time relatively short, that there was a major shift. It may well be that more of a shift is taking place over time. But much of that may be less to do with the fact of deemed consent and more to do with public awareness and support for the process itself.

After our debate on the 2004 legislation, I would not want us to proceed in this debate thinking that the broader range of issues were then neglected. They were not. In 2008, the then Labour Government instituted the Organ Donation Taskforce, the objective of which was in the subsequent five years, I think, to increase donor rates by 50%. In practice, they went up by about 45% and have continued to increase. That is precisely because the things that we know are also important were happening. There was increased public awareness and there has been an increase in the number of people on the organ donor register. After 2010, we engaged the nudge unit—the behavioural unit—to think about how we could nudge people to make that choice before their death. That has had some benefit through organisations such as the DVLA, but especially in the training of staff in the NHS and the appointment of additional specialist nurses for organ donation. It is important that it is not the clinicians who have been trying to save a life who then have to speak to the family about organ donation. Having those specialist nurses available and staff having the right training is really important.

All those things happened under the Organ Donation Taskforce, so on that basis, I do not share the view of Chris Rudge, who was the transplant director when I was Secretary of State and was responsible for the implementation of the task force, who I believe continues to oppose deemed consent. I think we have an almost ethical obligation to do everything that may contribute to the achievement of higher donor rates and thereby to save lives. The noble Lord, Lord Hunt, is absolutely right: it is tragic that so many people are on the waiting list for organs and die or leave the list without the benefit of a transplant. We must do everything we can.

I urge colleagues to recognise that we must think very carefully about how we do that and to recognise that there are other things that we have done and should continue to stress which may themselves make a significant contribution. We should proceed only on the basis that there is consensus, which happily there is, between parties and, I suspect, widely in the country. The objective is so important that we must be willing to take the ethical step of deeming consent where we cannot be absolutely sure what the deceased person’s view would have been. On that basis, I hope that the House will give the Bill a Second Reading.

Organ Donation (Deemed Consent) Bill

Lord Lansley Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 1st February 2019 Lords Chamber

[Baroness Jolly (LD)]

My Lords, I will be brief, not least because I have a cold and I am not sure how long I can keep going. First, I apologise to the Committee that I was unable to speak on Second Reading.

We know that up to 80% of the public would consent to this selfless act, but unfortunately less than half that number take the necessary steps to do so. My party approved this opt-out campaign in 2002 and it has been put in place in Wales.

What plans does the Minister anticipate being put in place to ensure that this campaign is carried out at least annually? The noble Lord, Lord McColl, was somewhat dubious about the small amount of money that was going to be put into an advertising campaign. All sorts of things might happen, but to do advertising campaigns online using Facebook and things like that will reduce the price hugely, although it is absolutely important that at least one shot—a letter or leaflet—should go to each household. Can the Minister give us some idea of the type of campaign that might be run, but also whose responsibility it would be? Would it be the department or NHS England? The noble Lord, Lord O’Shaughnessy, suggested that it might be Public Health England. I do not know.

As a House, we need to be aware that not everybody is in favour of this idea. One of my colleagues made it absolutely clear to me yesterday that he believes the decision should be his and his alone and that these proposals are illiberal. If the decision is to be made, he believes that it is he who should make it and not the state. Those were his words, not mine. He said the state should not have control of his body after he had died. Would it be possible to carry an opt-out card, which might be a sensible way around this?

My personal view is that having an organ donated is the best gift that those in desperate need of one will ever receive—not just the patient but their family, friends and those who care. We have seen the success of the opt-out system in Wales, so we on these Benches believe it is high time we followed suit in England to prevent people dying for lack of an organ.

[Lord Lansley (Con)]

My Lords, I think I am with the noble Lord, Lord Hunt, and others in having been sceptical of an opt-out system, not least when we came to discuss it at some length—I see the noble Lord, Lord Reid, there—during the passage of the Human Tissue Act back in 2003 or thereabouts. We looked at it at some length. That prompted the pursuit by subsequent Governments, including the coalition Government in which I served, of every available opportunity to try to increase donor rates, not least by improving the system of transplant co-ordination and the supply of specialist transplant nurses.

My first point, to which I hope my noble friend the Minister will respond positively, is that I do not share the view that under this Bill resources for information and for the transplant system—in particular for an increase in specialist transplant nursing support—are in any sense in competition. We need to do both, and I hope the Minister will be able to confirm that we will seek wherever possible to have exactly that support through transplant nurses. It is really important that we do. I think the noble Baroness, Lady Randerson, was referring to that when she referred to Spain. At the time, we looked in some detail at the Spanish example. Spain said to us that probably the bigger element in its success was not that it was an opt-out system but that it had really effective transplant co-ordination and strong support for families through trained nursing and support staff. That is the most important thing.

However—not to rerun Second Reading, to which I contributed—we have an ethical obligation to secure the maximum availability of organs for those waiting for them, some of whom, sadly, continue not to get access to organs and to die while waiting. We have an ethical conflict, because it is right to say that the state does not own our bodies. We have a right to determine what happens. My noble friend Lord O’Shaughnessy was absolutely correct in pointing out that the Bill offers an opportunity for those who wish to control what happens to their organs and bodies after death to make that explicit.

This brings me to my final point, which is to further thank my noble friend Lord McColl for raising these issues. If we are to go down this path, it is absolutely essential that the families of everyone who may be—sadly after death—a donor must be aware that they had an opportunity to consider this. Whether they took any action is a matter for them. We must be confident that the information, not only in the first instance but subsequently, is such that nobody could reasonably be expected not to have been presented with this as an issue they should consider. The noble Lord, Lord Anderson, asked what happens if the family disagree. They may, but the law is then very clear that the transplant co-ordinator, nurse or whoever must take the decision must do so seeking to determine what the loved one who has died would have thought. The evidence is not: what do you think, as the person in a qualifying relationship? It is: what can you say about what the view would have been of the person who has died and whose organs are potentially to be donated? That is the issue and the judgment that has to be made, and of course that is where the ethical issue really bites. It is not what we might think about our loved ones, but what we know about what they themselves thought about what should happen to their own organs. For those reasons, my noble friend’s amendments—I know he will not press them, and I think that is absolutely right—have very helpfully given an opportunity for the Minister to give us reassurance on both those points.

[Baroness Thornton (Lab)]

My Lords, I shall say just a few words. The noble Baroness, Lady Randerson, and the noble Lords, Lord Carlile, Lord O’Shaughnessy and Lord Lansley, have made the arguments extremely well, so there is no need to repeat them. I just make the practical point that if we want this on the statute book it has to be unamended. We can have these discussions— they are helpful—but that is the truth of the matter. We will all have received a briefing yesterday from Kidney Care UK, which stated that three people die every day waiting for a kidney. That is what we need to bear in mind.