Organ Donation (Deemed Consent) Bill - Second Reading

– in the House of Lords at 10:07 am on 23rd November 2018.

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Moved by Lord Hunt of Kings Heath

That the Bill be now read a second time.

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Labour

My Lords, I should first like to declare an interest regarding my forthcoming appointment to be a member of the General Medical Council.

Oh!

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Labour

It is a good start, my Lords—just have to keep going.

Every year, NHS Blood and Transplant holds a number of very moving ceremonies with donor families. These occasions are wonderful celebrations of the gift of a loved one’s organ, to give life to others. Last year in England, there were over 1,300 deceased organ donors and over 3,300 transplants. That is a wonderful achievement but we could do so much more. My Bill aims to increase the number of organ donations while maintaining strong family involvement in the decision which, I stress, will remain a remarkably altruistic act of giving. Nothing in this Bill will change the concept of giving.

It is thanks to the tireless work of a number of people to promote the Bill, especially my honourable friends Geoffrey Robinson and Dan Jarvis, who secured unprecedented cross-party support, that we are today a step closer to putting it on to the statute book. I extend my thanks to the Prime Minister and my right honourable friend the leader of the Opposition, and to other leaders of the political parties in Westminster, for their continuous support for the Bill, and to the Daily Mirror, for its unflagging and enthusiastic support. I also pay tribute to the noble Baroness, Lady Randerson, who took forward subsequent legislation in Wales to allow organs and tissues under deemed consent to be used in transplants in the rest of the UK countries. I am hoping that she may inform the House of the latest progress in Wales regarding the legislative changes that occurred there.

The Bill is often referred to as Max’s and Keira’s Bill, in honour of a recipient, 10 year-old Max Johnson, who recently received a “Pride of Britain” award from the Prime Minister for his immense bravery while waiting for a heart transplant, and the donor, Keira Ball, who tragically died in a road accident. I pay tribute to both of them.

There is currently a record 20 million people in England recorded on the organ donor register, but 400 people died last year while waiting for transplants, and a further 755 people were removed from the transplant list as they were just too ill to receive treatment and a transplant. This is partly down to the fact that only 1% of people die in circumstances where their organs are suitable for donation. It is also partly because members of the family are often not aware of their loved one’s wishes, and sometimes find it safer to say no. Our ambition is to achieve an 80% consent rate in England. This will not happen overnight; the experience in Wales is clear in that respect. However, if we reach that target and 80% of families allow donation to go ahead, there will be 280 donors a year, which could lead to as many as 700 more transplants a year. The Bill, if enacted, will be a significant step forward. Starting from the basis of presumed consent, the family would still be fully involved in the decision. The aim essentially is to spark in England the positive culture change that many nations in Europe have experienced, following their change to an opt-out position. It will mean more people being inspired to have that incredibly important conversation with their loved ones, knowing that the life of a person waiting for a transplant could be saved.

In countries where deemed consent systems are in place, there are generally higher numbers of organ donations when supplemented with wider measures. I will return to that later. It is particularly pleasing to note that Wales has now reached a consent rate of 70%, and the first few months of 2018 showed that rising to 73%.

I would like to give a summary of the Bill, which consists of three clauses. First, however, I would like to clarify a few things about its scope. The proposed consent system only covers deceased donations—it does not apply to living donations or donations for research purposes. The Bill would make changes to the Human Tissue Act 2004, which covers England, Wales and Northern Ireland, but it would make the changes to consent in England only. The system of deemed consent in England will be consistent with the Welsh opt-out system. Transplants which currently take place under the current system—heart, lung, kidney, liver, pancreas, bowel and tissues such as corneas, skin, bones and tendons—will fall under the deemed consent provisions. Excluded from those provisions will be the less common organs and tissues, often called novel transplants. These will still require express consent.

Following consultation, regulations will be set out by the Secretary of State in an affirmative statutory instrument, which will specify which organs or tissues will be excluded from deemed consent. A Written Ministerial Statement will be part of the process every time the regulations are amended. It is important we have an approach consistent with Wales and Scotland on these issues to make sure that nurses and clinicians working across borders follow the same approach.

There are other important safeguards in the Bill. First, all children below 18 will be excluded from deemed consent, although they will still be able to register as now to donate their organs. People who are not ordinarily resident in England for at least 12 months immediately before their death will be exempt from the new arrangements. In practice, this means that people living in England in the short term will not be affected by changes in the consent system. The Bill also provides a safeguard for people who lack the capacity to understand the concept of deemed consent for a significant period before their death. The decision on whether a person lacks capacity will continue to be established in accordance with the Mental Capacity Act 2005.

Very importantly, the Bill sets out the role of the deceased family and friends under the proposed arrangements. It makes it clear that they may provide information suggesting the deceased would not have consented, to prevent donation proceeding. This is very important. I reassure noble Lords that the family of the deceased will continue to be involved in discussions with specialist nurses about their loved one’s wishes and how best to support those wishes, also taking account of faith and cultural considerations. Clinicians will never proceed if the family object strongly. I know the Government have worked hard with different faiths to ensure that they are comfortable with how deemed consent will work. As Kidney Care UK put it, changes in the law on consent do not change the importance of people talking to their families about their wishes in respect of organ donation.

To support the smooth implementation of the provisions in the Bill, it places a duty on the Human Tissue Authority, the regulator, to update its code of practice and issue practical guidance for professionals. The new codes will be consolidated in a single code, to be consulted on and laid in Parliament. The Bill will also allow all organs removed in England for transplantation purposes to continue to be used across the UK, to save as many people in need as possible.

Clause 3 sets out that the Bill extends to England, Wales and Northern Ireland as it will be amending the Human Tissue Act 2004, which extends to those countries. It sets out that Clauses 1 and 2 will come into force on the day or days that the Secretary of State appoints in regulations made by statutory instrument, so in effect the Secretary of State will have to set out what the commencement date is for deemed consent in England. Clause 3 automatically comes into force on the day that the Act is passed.

I recognise that a change to the consent system is not a panacea. The Bill needs to be accompanied by an assurance that capacity in the NHS in terms of transplant teams, intensive beds and specialist nurses will be sufficient. I particularly mention the need for good-quality training and greater numbers of specialist nurses. They are remarkable people who have the extremely difficult role of initiating discussions about potential organ donations with families at such a sensitive time. The Spanish experience is that investment in specialist nurses is one of the major factors in their success and the transformation that has occurred in Spain.

It will be essential to have a strong communications strategy to ensure that the public are fully aware of the changes, and I look forward to the Minister’s response on that. I would also say—and I think this is the Welsh experience—that it is important to have follow-up campaigns because clearly, the cultural change we want to see will not happen overnight.

I end by saying that I am clear that the gift of giving will be as strong a part of organ donation as ever. I thought the Minister in the other place, Jackie Doyle-Price, put it well when the Bill went through its Commons stages:

“The most important thing any of us can do if we want to increase organ donation is ensure that we all have those conversations with our families, so that they understand our wishes … One of the great virtues of the Bill and the surrounding campaigns is that we have encouraged people to have those conversations. It has been a real driver of cultural change in that sense”.—[Official Report, Commons, Organ Donation (Deemed Consent) Bill Committee, 12/09/18; cols. 11-12.]

I think that puts it very well. I am confident that, if enacted, the Bill will play a significant role in changing the culture towards organ donation in England and help hundreds of lives in the years to come. I beg to move.

Photo of Lord Lansley Lord Lansley Conservative 10:18 am, 23rd November 2018

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 deceased person’s view would have been. On that basis, I hope that the House will give the Bill a Second Reading.

Photo of Lord Patel Lord Patel Chair, Science and Technology Committee (Lords) 10:28 am, 23rd November 2018

My Lords, first, I congratulate the noble Lord, Lord Hunt, on his appointment to the General Medical Council. I do not know whether I should also sympathise with him—I hope it bodes well for the GMC—because he certainly needs it.

I support the Bill, which proposes new opt-out legislation for the organ donation register. It is not a position I have held before when I have previously spoken about deemed consent, but I have had a change of mind.

Before I go any further, I am very pleased to see that the noble Lord, Lord Elder, will speak in this debate. I very much look forward to his contribution. I also put on record my gratitude to all those involved in organ donation. Every transplant is a reflection of the exceptional altruism of the donor and their family, and a testament to the care and hard work of many in the hard-pressed NHS. This has led to the organ donation and transplantation numbers reaching an all-time high. Last year, for the first time ever, 5,000 people benefited from a transplant in a single year.

Despite this, several challenges remain. As we have already heard, there is an increasing gap between the number waiting for a transplant and the number of organs available. Every day, three people who are in need of an organ die. As of 15 November 2018, 6,163 people are on active waiting lists for an organ. Over 300 are children, and over 300 are in need of a new heart. Change in legislation may not by itself be the magic wand, but together with other necessary measures, it may well begin to narrow the gap between those on the waiting lists and the number of organs available.

There is also the challenge of the huge imbalance between the number of people in black, Asian and ethnic minority communities who are in need of a transplant, and the number of suitable organs available for them. More organs from these communities are needed, as blood and tissue types must match, particularly for things like kidney transplants.

Surveys suggest that opt-out legislation leads to higher rates of organ donation, but at the same time, evidence of direct cause and effect is lacking. Clearly, as has already been mentioned by the noble Lords, Lord Hunt and Lord Lansley, other factors must also play an important part in raising the numbers. We need to be aware of what these might be. I agree with the Nuffield Council on Bioethics when it says that opt-out systems can be ethical,

“if people are well-informed, families are appropriately involved (well-supported … ), and trust in the organ donation system is not compromised”.

This means that this Bill must pay serious attention to three key areas. The first is a well-informed public: the public should be informed on an ongoing basis—that point has also been made. Information about organ donation should be easily available.

The second area is the importance of families: families must stay at the heart of the decision-making process. In this respect, the role of the specialist nurses is crucial—again, this has already been emphasised. We need to make sure that there are enough specialist nurses available, as they play an important role at a very sensitive time in families’ lives, both for the donor and the recipient of an organ.

The third area is the importance of maintaining trust in the organ donation system. Public information on the new system will need to be backed up by the continuous education and training of the health professionals involved.

Let me now turn briefly to the challenges in relation to black and Asian communities and organ donation. Over 1,800 patients from black and Asian communities are on the waiting list for organ donation. Some 901 received a transplant last year, but had waited much longer; 114 people donated organs. Some 35% of the total number of patients waiting for kidney transplants are from black and Asian communities, partly because of the increased rates of diabetes and renal disease that occur in these communities, and partly because kidney transplants require a closer matching of blood and tissues than other transplants.

It is important that these communities understand what opt-out means, and that they are involved. While the government campaign will focus on black and Asian and other ethnic minorities, it will require a sensitive approach on the back of opt-out legislation, providing culturally sensitive information, a targeted awareness-raising campaign, and issues that need to be addressed to gain the trust that will be required.

This legislation is widely supported by the medical and other health professionals and charities, particularly those such as the British Heart Foundation, and we should support it too. I hope that the House will not hold it back.

Photo of Baroness Crawley Baroness Crawley Labour 10:35 am, 23rd November 2018

My Lords, I too congratulate my noble friend Lord Hunt on his important work in bringing the Bill before us today, and of course on his new appointment—we are very proud of him.

In so many ways, the business of politics should be to minimise unnecessary pain and marginalise premature death, as the noble Lord, Lord Lansley, said. According to the latest NHS figures for the year ending March 2018, the total number of patients whose lives were saved or improved by an organ transplant increased by 7% to 5,090, as the noble Lord, Lord Patel, said. It is a mercy that we live in a time when, thanks to science and innovation, sick children can be given new hearts—but really they are old hearts. This is the most wonderful form of recycling we can ever hope to see. Like all good recycling schemes, the more people who get involved and take action and tell their kids about it, the stronger and the healthier our society becomes.

The statistics show that the incidence of every kind of organ transplant is rising, from donors both living and deceased. But hundreds still die every year while waiting on the list, hoping for a donor who does not appear. We are told of the 426 patients who died last year on the waiting list for new organs; of those, 17 were children. There can be nothing more gruesome for their families—all those loved ones who know that the science is in place and the doctors are ready, but the phone never rings. Their souls must be truly sealed up with tears.

Everyone knows a relative or a friend—I certainly do—whose lifespan has been extended by the good will of a fellow human being whom he or she will most likely never meet. The silent solidarity of one particular young man who has bone marrow drawn out of his pelvis so that an older man can defeat blood cancer is the most precious human currency we can ever store. The kidney, the pancreas, the liver, the heart and the lung can all be used more than once. A thousand tons of relief and joy must pour into families every year because of this modern, scientific and miraculous reality.

I congratulate Dan Jarvis and all those from all sides of the House in another place who have pushed so hard to make Max and Keira’s law not merely a step forward but, with this opt-out provision, a turn of the ratchet. The Mirror’s campaigning activity, sustained over several years, is a credit to the editor and the journalists concerned, as well as to all the brave families who told and retold their stories in its pages. Such a sustained campaign has been needed because, although 80% of people said they would be willing to donate their organs when asked last year, only 37% had recorded that decision on the NHS organ donor register. The gap is important.

Finally, as the noble Lord, Lord Patel, mentioned, we are surely all glad that, where in the past there have been cultural and religious inhibitions about post-mortem transplants, that now seems to be something of a losing force. I hope that continues. We have to hope that the whole of England, in all its glorious diversity, absorbs the message of deemed consent and that every community teaches its young that organ donation is one of the highest forms of good.

Photo of Baroness Chisholm of Owlpen Baroness Chisholm of Owlpen Conservative 10:40 am, 23rd November 2018

My Lords, I am delighted to support this Bill and thank the noble Lord, Lord Hunt, for bringing it before us today. Its importance cannot be overestimated. It is a good and—thank goodness—simple Bill, and it will save lives. As the noble Baroness, Lady Crawley, and the noble Lord, Lord Patel, mentioned, there are encouraging signs of donors coming forward, but the statistics are still depressing and distressing. As we have heard, Wales already has a presumed consent or opt-out system, and Scotland intends to follow suit. As the noble Baroness, Lady Crawley, mentioned, research has shown that 82% support organ donation, and the public consultation showed unprecedented support, yet we know that only 37% are on the organ donor register.

This simple but effective Bill has the support of doctors and health campaigners. It will not, on its own, solve the problem of getting more donors on the register, but it will enable us to move forward and launch an awareness campaign. I am sure all noble Lords remember the huge publicity around the early transplants, when the successful recipients were household names, seen on TV and interviewed in newspapers and magazines due to the rarity of the procedure. Thank goodness that is not the case today and transplants are now an everyday occurrence, but that headline news was an incentive for people to come forward as donors. The general public are, on the whole, unaware of how important it is for donors to register. Most do not register unless they are personally affected.

Therefore, to be as effective as we hope it will be, this Bill depends on the awareness campaign around it. As the noble Lord, Lord Hunt, mentioned, there needs to be a cultural change. I think I am right in saying that, at present, family refusal rates in the UK are considerably higher than in many parts of mainland Europe. There needs to be education in schools, colleges and universities; an awareness campaign on the radio and TV, in newspapers, magazines and social media; a campaign on lives saved, with examples from donors and recipients; and, perhaps most importantly, a campaign to encourage families to have the conversation. As the noble Lord, Lord Hunt, mentioned, letting the relatives know the organ donor’s decision will make it much easier for them to be supportive at a time of immeasurable grief. I still remember vividly how difficult it was, when I was nursing, to have this conversation with relatives and loved ones, who more often than not were unaware of a donor’s wishes.

This Bill does not change families’ rights. They will continue to be included and will not be overruled; it will not close families out. But the way in which the possibility of donation is presented can have a critical impact on the decision that relatives and loved ones make. Timing, language and the right healthcare professionals are all important factors, and I was pleased to see confirmation in a letter from my noble friend the Minister that there will be specialist nurses for organ donation and a key focus on training to enhance skills in supporting grieving families. It is also vital that those who opt out and relatives who do not give consent feel no shame, and that we respect their decisions.

This Bill is a no-brainer, as far as I am concerned. With the right campaign, it will become apparent that this is not a forced choice and that organ donation is still a gift, perhaps one of the greatest gifts that can be given from one human being to another. One donor can help many recipients. The donor process benefits not only recipients, but also the families of donors and recipients. Recipients’ families have the joy of having their loved ones returned to health, while donors’ families find meaning and gain peace from knowing that lives have been saved as a result of the unfortunate death of their loved ones.

Once again, I thank the noble Lord, Lord Hunt, for bringing this important Bill to our attention, and I am grateful for all the clear explanations of it from both the noble Lord and the Minister, my noble friend Lord O’Shaughnessy. I am delighted that the Government fully support it. Let us now get on with it and get the Bill through Parliament.

Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords) 10:45 am, 23rd November 2018

My Lords, I congratulate the noble Lord, Lord Hunt of Kings Heath, on bringing this important Bill to this House. It will bring organ donation legislation in England in line with that of Wales and Scotland for the benefit of all. I should declare that I was involved in the early stages of consultation in Wales, and I introduced the Kidney Transplant Bill in 2008 for presumed consent to donate one kidney, provided there was no evidence either from a central registry or from the dead patient’s relatives that he or she had opted out of being a potential donor. My Bill did not progress but I continued to have an involvement in the developments in Wales.

Many years ago, I conducted a study of bereaved parents and was struck by the comfort that donation gave them after their terrible, tragic loss. Some regretted not being asked about transplant donation and one regretted having declined.

Laws send social messages. When we were considering such legislation in Wales, we undertook very widespread consultation and carefully considered the pros and cons. I hope that England can now learn from our experience, because all the planning and consultation was essential to the success of the legislation when it came into force.

I want to cover how we went about it, the results of our process overall and things that I hope the Minister and the team will implement to take this forward. I am grateful to Professor Vivienne Harpwood from Cardiff University school of law for giving me the latest data. She has worked on this issue for years. I also pay tribute to the noble Baroness, Lady Randerson, whom I would like to call a friend—she is indeed a friend—for the important role she has played in Wales.

A tremendous amount of careful thought and planning contributed to the success of the legislation: there was very careful consideration of the ethical issues; we studied the outcome of similar legislation in other countries and consulted with many sections of society, including faith groups and ethnic minority groups to help us understand their sensitivities, respect their views and address their concerns; and numerous meetings and consultations took place. Although the Human Transplantation (Wales) Act obtained Royal Assent on 10 September 2013, the system did not begin to operate until December 2015 to allow adequate time for people to absorb and understand essential information about the new law.

As we had decided to introduce a “soft” opt-out system, we realised that it was necessary to have a large-scale information/education process, during which families were encouraged to discuss their wishes and people were urged to make their views about organ donation known to their relatives. Every household in Wales received carefully designed bilingual written information on more than one occasion, and there was an extensive media campaign, roadshows in supermarkets and other places, and a national countdown clock. This campaign informed people clearly that they could either opt in or opt out of the organ donor register, or do nothing if they did not object but wished their family to decide. A 20-second TV advert urged, “Talk about your organ donation decision or someone else may speak for you”. It was very powerful.

By 2017, over half the adult population in Wales had talked with family about their wishes. The widespread publicity about the benefits of organ donation helped people understand the gift of life, and we saw an early rise in the number of organs donated and transplanted. We also invested in training specialist nurses in organ donation. As the noble Lord, Lord Hunt, stressed, these nurses are key to the legislation working well. They sensitively explore the family’s recall of those conversations and their feelings.

It is essential that the bereaved family are able to express their views and know that they will be respected, as the Bill before us ensures. There must never be pressure on families. They are being asked to consider donation when they are numb at the sudden loss of the person they love—their child, spouse, fiancée, partner, brother, sister or a parent. Their grief at that time is overwhelming, and they live for the rest of their lives with the events of that tragic day. They remember every word of the conversations they had, second by second. That is why a soft opt-out, as in this Bill and in Wales, is so important.

Remembering donors and thanking families with national events, such as the Order of St John services of thanksgiving, are important to recognise that they have given the gift of life. In my own family, the service honoured the man who died, bringing enormous comfort to all the bereaved, including his children.

Three and a half years after we implemented our legislation in Wales, we now have the highest combined donation rate in the UK of 80.5% after brain stem or circulatory death. Currently, England runs at 66.2%, Scotland at 63.6% and Northern Ireland at 66.7%. Donation after brain stem death now has consent rates in Wales of 88.2%, as opposed to those in England at 73.3%. Donation after circulatory death consent has also risen in Wales to 68%, compared with 59.8% in England. These figures are better than we were expecting when the legislation was going through the Assembly, and the accompanying publicity campaign might account in part for this latest good news and, importantly, that we have not had the problems or backlash predicted.

There has been a steady increase in Wales. On 1 December 2016—the first anniversary of the implementation of the new legislation—the figures indicated that 39 organs were transplanted from patients whose consent was deemed. Welsh Government reports published on the same day were accompanied by positive statements by both the First Minister and the Cabinet Secretary for Health. By February 2018, 39% of the Welsh population had opted in to donate.

When you speak to people from donor families, you realise how glad people are to have been able to transform the lives of complete strangers, despite having faced the overwhelming tragedy of losing a loved one. You realise how important the recognition of their gift is, through these services of thanksgiving and so on, as they go forward in their own lives.

I seek two reassurances from those taking this forward. The first is that the public education campaign will be as thorough and carefully planned as ours in Wales. The second is that it will be accompanied by enough intensive care beds and specialist nurses in organ donation. Families must never feel hurried, and there can be a need to maintain hydration and oxygenation while waiting for the transplant to be set up. Even those waiting for a transplant always keep the phone by them, anxiously waiting for that call to the operating theatre, but it can take some time to get there. I am grateful for the assurance given in the letter from the Minister and the noble Lord, Lord Hunt, that preferential donation, which I argued hard for in 2009, will not be jeopardised. Where a family member is awaiting transplant, and the tissue is compatible, relatives must be able to ask for that specific organ to go to that person, while other organs go unconditionally to others waiting.

On a solemn note, I hope with this Bill we will see an end to transplant tourism, where desperately poor people sell an organ—nearly always a kidney—or, even worse, organs are harvested from executed prisoners. We should follow Italy, Spain, Israel and Taiwan in legislating to confront this abhorrent human rights issue, but that is for another day.

The Bill before us today is incredibly important. It can help the 5,000-plus people waiting for a transplant to join the 50,000 now living thanks to organ donation. It is truly the gift of life, and it deserves a smooth passage.

Photo of Lord Ribeiro Lord Ribeiro Conservative 10:54 am, 23rd November 2018

My Lords, I support the Bill and hope it will pass. I thank the noble Lord, Lord Hunt, and my noble friend Lord O’Shaughnessy for the briefings they gave us before today. However, I have a few reservations, which I will address shortly.

As we heard from the noble Lord, Lord Patel, the black, Asian and minority ethic—BAME—community is one group of patients most in need of a change in legislation. BAME people are often the most in need of transplants—particularly kidney transplants for renal failure due to secondary high blood pressure—but, for various reasons, they often refuse consent because of faith or cultural concerns. In 2017-18, 1,487 BAME patients were on the renal transplant waiting list, many as a result of high blood pressure—a particular problem for this ethnic group—but only 49 deceased kidney donors from BAME backgrounds to help out. That represents a fraction of the need. As a surgeon and an African, I understand the difficulties faced by BAME people in becoming donors. There may be religious, cultural or ill-informed reasons for saying no.

I have experience of working as a patron of Transplant Links Community, or TLC, a charity that has transformed the lives of many people in Africa and the Caribbean who suffer from kidney failure, especially children. Without transplantation, such people have to endure regular dialysis, often three times a week, which can be challenging in a rural setting and extremely expensive. The charity was founded by two kidney specialists from Queen Elizabeth Hospital in Birmingham: Dr Dwomoa Adu, a fellow Ghanaian and a nephrologist, and Dr Andrew Ready, a transplant surgeon.

In 1974, Dr Adu and I worked in the renal service at Korle-Bu Hospital in Accra, Ghana, the hospital chosen by the Birmingham team for their first live-donor kidney transplant in Ghana in 2007. We have heard about a boy called Max, but Felix, the young boy on whom this transplant was performed, has completed a chemistry degree and hopes to become a doctor. The programme has now been extended to Trinidad, Jamaica, Barbados and Zambia and is supported by my fellow patrons, the noble Baroness, Lady Benjamin, and my noble friend Lady Cumberlege. By their very nature, live-donor transplants can help only a small number of patients, while cadaveric donation has the potential to help many by offering more than one organ for transplantation.

As a surgeon working in the UK, I know how difficult and distressing it can be to approach the deceased’s family with a request for organ donation, often after heroic efforts to save the person’s life. As we have heard, it is not surprising that at this most sensitive time, some families say no—even if the deceased had indicated a desire to donate. Eight out of 10 patients on the transplant waiting list are hoping for a kidney; currently, 4,375 people in England are waiting for a kidney. A change from opting in to opting out will make an enormous difference and provide more organs for transplantation.

However, the noble Lord, Lord Hunt, said, unless the infrastructure is improved, with more specialist nurses, transplant co-ordinators and so on, we will not see much change. The British Transplant Society warns that,

“assessments of the effects of opt-out laws on donation rates are hampered by differences in cultural attitudes, economic conditions, availability of intensive care units, numbers of transplant co-ordinators, degree of governmental support and other factors, whose influence may be important but uncharted”.

Spain, as we have heard, has the highest rate internationally of transplantations with the opt-out policy, but it introduced the system in 1979 and saw a significant increase only,

“ten years after the law was introduced. Much of Spain’s success is attributed to the establishment of a new national transplant organisation to co-ordinate the donation and transplantation process, including the appointment of transplant co-ordinators who instigate conversations with the family of potential donors”.

As I said, doctors faced with repeated rejections by families often fail to press the case and so opportunities are lost. We must invest in more staff as well as raise public awareness of the need to donate. The Government will, I am sure, launch a campaign to highlight the need for more organ donors. Public awareness will, we hope, lead to an increase in donors, especially from BAME communities, who face the greatest challenge with donations, as the noble Lord, Lord Patel, told us.

I started by referring to live-donor transplants. These reflect a personal commitment—a gift, as has been said, from one loved one to another. This altruistic giving should continue and not be impacted by the belief that it is no longer necessary as the opt-out programme will remove the need for it. Tissue- matched live-donor transplants give the best results and we must encourage families to continue to engage in the programme.

The noble Lord, Lord Hunt, referred to an organ donation consent rate in Wales of 77%. I have a publication here from the Welsh Government, dated 16 November, which suggests that Wales has reached the highest organ donation consent rate in the UK, at 80.5%. This compares to 66.2% in England, 63.6% in Scotland at and 66.7% in Northern Ireland. This is the first sign of Wales’s opt-out programme working. It is time for us to catch up, but let us not assume that a change in the law will be the end of the matter, like waving a magic wand—it will not. It will require preparation and information to drive a public awareness campaign and I look to the Minister to tell us how this will be achieved. I can also tell the House that I have spoken to the president of the Royal College of Surgeons, who personally supports the Bill and will be raising it with his council in December.

Photo of The Bishop of Carlisle The Bishop of Carlisle Bishop 11:02 am, 23rd November 2018

My Lords, the Church of England is wholly committed to both the principle and the practice of organ donation, believing as it does that giving oneself and one’s possessions voluntarily for the well-being of others and without compulsion is a Christian duty and that organ donation is a striking example of that. Like many other noble Lords, I am personally glad to have my name on the organ donor register. I was closely involved with the so-called fleshandblood churches campaign, which we ran in partnership with the NHS from 2012 onwards and added thousands of potential donors to the list. We therefore have absolutely no wish to be remotely churlish about this Private Member’s Bill which is so very clearly well intentioned, and with whose overall objectives we are in complete agreement. We are most grateful to the noble Lord, Lord Hunt, for bringing it forward.

However, I cannot let this moment pass without mentioning three caveats which have all been raised elsewhere and by other noble Lords but which bear repeating and need to be borne firmly in mind as the Bill proceeds. First, “deemed consent” is not some sort of magic wand—as the noble Lord, Lord Ribeiro, referred to it—that will automatically increase the number of effective donations. More important by some distance, as we have been reminded, is the raising of awareness, the encouragement of conversations about this subject in families and a new willingness to talk about death. This was stated by the Bill’s author as one of its principal aims, but I do not see the Bill achieving that aim in itself. As some have observed, it could have the opposite effect. This would be highly unfortunate since, as we know, for understandable reasons, grieving relatives are often a stumbling block to donation, even when it was manifestly the deceased person’s wish.

My second hesitation is that our present system, which is referred to as a hard opt in but is really a soft opt in, reflects a very careful balance between individuals, relatives and the state, with a presumption that the state does not have a right to dictate either to individuals or their families how their bodies should be used. An opt-out system represents, whether it means to or not, a major shift in the state’s relationship with its citizens. The noble Lord, Lord Lansley, touched on this. As the Catholic Bishops’ Conference of England and Wales observed, an opt-in system emphasises the positive ethos of donation as a free gift with informed consent. Despite the assurance from the noble Lord, Lord Hunt, that the Bill is still very much about giving, this suggests that we need an overwhelming case that numbers of lives saved or enhanced would be significantly increased. That overwhelming case would have to be made before a change of this kind is introduced.

That brings me to my third caveat. There is at present, I suggest, no overwhelming case. The evidence, such as we have, is rather ambivalent. I fully acknowledge the February 2018 BMJ article cited in our Library briefing, which says that Wales has seen more registered donors and fewer family refusals than any other part of the UK since the introduction of the opt-out system in 2015—the noble Baroness, Lady Finlay, and the noble Lord, Lord Ribeiro, referred to the very high consent rate in Wales. However, at the same time, as the same briefing records, the Welsh Government indicate that, as yet, opt out has had no impact on the number of actual organ donors in Wales. It is three years on: perhaps we do need to wait 10 years, as the noble Lord, Lord Ribeiro, suggested, because at the moment the evidence is not clear.

I note the comments of the highly regarded Nuffield Council on Bioethics, which is concerned that making a legislative change based on poor evidence risks undermining public trust in the organ donation system. Indeed, as we have been reminded, especially by the noble Lord, Lord Ribeiro, examples from countries such as Spain indicate that improvements to transplant protocols and procedures are more important than a change to the consent system. That is why the Church of England would prefer to build on the current opt-in model to increase the number of organ donors and transplants. However, we accept fully the head of steam, as it were, behind the Bill and will certainly not oppose it. None the less, we ask that in the almost certain event of its successful passage three very important considerations are taken into account.

The first—we have heard a great deal about this already—is that there should be very good communication, not least in schools and in BAME communities, where, as we have heard, the need for donors and transplants is often greatest. We heard some statistics on this from the noble Lord, Lord Patel. The second is that adequate resources should be made available for the implementation of this new system, including specialist nurses for organ donation. That has been mentioned by almost all noble Lords who have spoken. The third is that more effective use should be made of potential donors, in ways highlighted by the transplant pathway. Only then do we believe that the pressing need for more organ donations will be met.

Photo of Lord Oates Lord Oates Liberal Democrat 11:09 am, 23rd November 2018

My Lords, in speaking on this Bill, I should first declare my interest as a non-executive director of NHS Blood and Transplant, as set out in the register of Members’ interests.

There are many people who deserve credit for their role in this legislation, but as a number of noble Lords have said, the most profound recognition and honour should perhaps be given to Keira Ball and Max Johnson. Keira, as many noble Lords will know, died tragically at the age of nine in a car accident. During a time of unimaginable grief and shock, and with his wife also seriously injured, Keira’s father agreed to organ donation. Keira saved the lives of four people through that precious gift. One of those patients, as we know, was Max Johnson, who received her heart. His campaign was instrumental in inspiring this Bill that we are debating today.

As the noble Lord, Lord Hunt, stated, we also owe a huge debt to Geoffrey Robinson and Dan Jarvis, who introduced the Bill in another place. We also owe a debt to the noble Lord, Lord Hunt, who has brought this Bill before this House.

As many noble Lords have also recognised, every year hundreds of people continue to die while awaiting a transplant, due to lack of availability of organs. Hundreds more come off the transplant list because their health has deteriorated so greatly that they cannot receive a transplant. The noble Lords, Lord Lansley and Lord Ribeiro, and other noble Lords are of course absolutely right that the Bill on its own will not change that, but the experience in Wales demonstrates that such a Bill, accompanied by effective communications—and most importantly, a public debate and family conversations—can mark a profound shift. The latest figures from Wales have shown such a shift, and I pay tribute, as other noble Lords have, to my noble friend Lady Randerson for her part in that process.

Already, there has been extensive engagement from the public in England as a result of this Bill being brought forward. Over 17,000 people responded to the public consultation, a figure that is well in excess of normal response rates to government consultations. NHSBT’s ongoing public surveys indicate that over 80% of the UK population supports organ donation. As part of the consultation process, NHSBT also undertook work to seek the views of those who are most closely involved in the donation process: intensive care clinicians; clinical leads for organ donation; and specialist nurses for organ donation. Over 700 responses were received. The results show that over 76% of respondents supported the change in legislation. There are also many people who not only responded to the formal consultation but who have given further help to review and scrutinise the Bill to ensure it achieves its objectives without adverse or unintended consequences. The contribution of the faith communities has also been critical.

So the Bill has the support of the public, it has stakeholder support and it has medical and nursing support, and that support will need to be honoured by doing everything possible to make sure that every family of every single potential donor is approached and, where consent is in place, that every single organ that can be safely transplanted is transplanted. First, there is the importance of the communications strategies and campaigns, which have been spoken about already as having been important in Wales, that can raise awareness of the change in the law and encourage conversations in families, so that people have an understanding of the new legislation and also have reassurance that the decision still lies with the individual. Secondly, there is a need to ensure that the infrastructure is in place to manage the increase in donation and transplant activity. Medical and nursing teams need to be able to keep pace with the anticipated rise. Thirdly, we need to ensure that everything is done to use all organs that are donated.

It is anticipated that the change in legislation will increase the availability of organs from donors after circulatory death, from whom currently fewer organs can be successfully transplanted. Organ usage from these donors can be dramatically increased if the retrieval teams are able to use technologies that preserve the organs. For example, between February 2015 and July 2018, the introduction of machine perfusion for hearts led to 66 additional hearts being available for transplant. Service evaluations for the use of abdominal organ machine perfusion also demonstrate significant increases in the number and quality of organs that can be donated. Using these new technologies will help ensure that no potential for a safe transplanted organ is missed.

The fourth and final approach needed to deliver successful change is to continue to publicly recognise and celebrate organ donors in the way that a number of noble Lords have already mentioned. Organ donation is the last, greatest gift that anyone could possibly give. It is giving the gift of life and it must continue to be celebrated, even when this Bill is passed.

During the debate over the proposed changes to the law, a number of important issues have been raised by the public and a variety of stakeholders, particularly around family and faith. The public and stakeholders have been very clear that it is vital that the family should continue to be involved in discussions regarding organ donation after a change in the law. As the noble Lord, Lord Hunt, made clear, that must, and will, always remain the case. The next of kin of potential donors will always be approached prior to donation. If the family is not present when the patient first enters hospital, the NHS goes to great lengths to find them. That starts when the ambulance crews first arrive at the scene and continues until the next of kin can be found. If necessary, the police are asked for their help, and other records such as passport applications are checked to identify next of kin. Where there is no family, others are approached, such as friends of long standing.

Family discussion is vital for three reasons. First, it is the right thing to do. Secondly, speaking to families is necessary to determine whether their loved one would have wanted to donate, and that will continue. Thirdly, information is needed from the family regarding past medical and lifestyle information. Without this, it is much more difficult to determine whether it would be safe for retrieved organs to be transplanted.

Many noble Lords have paid tribute to the specialist nurses and highlighted their importance in this process. They are vital, and anybody who has had the privilege of speaking with them about their work will know their dedication to the very difficult job they do, in such a professional, sensitive and caring way. They ensure that, as far as possible, the family are given sufficient time to consider organ donation. NHSBT data shows that family consent rates are significantly higher if a specialist nurse is involved in the family approach.

Families are also aided by knowing whether their loved one had recorded a decision on the organ donor register. The consent rate is 92% if the family know that their loved one had recorded a decision to donate on the register. It will remain important to encourage people to register a positive decision. The family will always be asked for their views on whether any special considerations should be taken into account, including whether their loved one had a particular faith or beliefs and whether the family would like to speak to a faith leader or counsellor.

Finally, there are strict policies and protocols in place to safeguard the process, with many checks throughout the donation, retrieval and transplant process. Consent is checked on multiple occasions, by several different medical, nursing and support teams. NHS Blood and Transplant is audited and inspected on this aspect by the Human Tissue Authority.

In conclusion, it is absolutely right to say that this Bill, in itself, is not a panacea, but it is an important contribution. It will help start the debate and deliver—in the way that has been shown in Wales—profound changes, we hope, in levels of donation. I pay tribute to the noble Lord, Lord Hunt, and to all those who have brought this Bill forward. I recognise the work of officials in the Department of Health and Social Care, and the great work that has been done by the Minister in another place, Jackie Doyle-Price, and the noble Lord, Lord O’Shaughnessy. Most importantly, our tributes, thanks and recognition should go to the donors and their families, whose decisions are the gift of life. We hope that this Bill will allow far more people to benefit from such donations.

Photo of Baroness Sater Baroness Sater Conservative 11:20 am, 23rd November 2018

I thank the noble Lord, Lord Hunt of Kings Heath, for his sponsorship of this Bill. I also pay tribute to all those here and in the other place for their tireless endeavours so far on this important matter. That it has cross-party support in both Chambers is also very welcome and will, I hope, facilitate smooth passage into law.

My Lords, the briefing for this debate has been clear and informative, so I will not take up time telling the House that which they already know. The stats are deeply distressing and concerning, as many noble Lords have mentioned today. As the noble Lord, Lord Patel, mentioned, three people die each day due to a lack of suitable organ donation. Over 6,000 people across the United Kingdom are actively waiting for transplants that will save or significantly prolong their lives. On average, those from ethnic minority backgrounds may wait much longer than others for a suitable match.

It was as a trustee of the British Lung Foundation that I became aware of the crucial need for and success of organ transplants and their transformational effect on not just those whose lives they saved, but their families and friends as well. The saying “a new lease of life” never rang more true. But I confess, my support for the British Lung Foundation may not have come about had I not witnessed my own mother succumb to emphysema some years before. It was heartbreaking to watch my much-loved mother’s most vibrant life deteriorate, to the extent that she struggled to simply breathe. An organ donation would not have saved her, but what we do know is that today there are hundreds of people afflicted with lung disease, and many whose condition could be improved or life saved by a transplant. It is right that we do all we can to finalise and pass this very necessary Bill, but also provide the sustainable environment in which it will need to operate.

I was pleased to note that the money resolution for this Bill was passed in September. It is important recognition of the additional work an opt-out system would require and the costs that will need to be borne by the NHS and its blood transfusion authority, for example. I recognise and respect the absolute right of individuals to opt-out of organ donation, and we must make it easy for those people to do so. Establishing the practical infrastructure for those who do wish to follow through is also vital. Funding for these elements is indeed key. The United Kingdom has a very low level of organ donation consent—a sobering point which illustrates a great and profound need for a public awareness and education campaign on this subject. Both here and in the other place, attention has previously been drawn to the example set by Spain, whose noteworthy successes in this field include both educating its people and reaching families who wish to override consent previously given.

When considering the Bill’s financial implications, I would encourage the Government to continue reflecting on the huge importance of public awareness. It is at the age of 18 that a person becomes eligible to determine whether or not they opt out of organ donation. In order to make an informed decision and ensure their wishes are carried out, they must be able to speak with ease about it to their families, friends, teachers, doctors, faith leaders and so on. The only way to ensure that everyone is comfortable having this conversation is by giving them the knowledge they need through open, transparent and easily accessible means. Public health campaigns have had significant impact and huge success in the past, but invariably they require co-ordination across government portfolios and the money to back them up. It would be devastating to win the day but lose the battle because of a lack of information.

I am delighted the Government are supporting the Bill. I feel grateful to be able to play some small part in furthering the cause today and I look forward to supporting the Bill going forward.

Photo of Lord Elder Lord Elder Labour 11:25 am, 23rd November 2018

My Lords, I rise to support the Bill and, in doing so, congratulate my noble friend Lord Hunt on his role in this and Geoffrey Robinson, in another place with other colleagues, for introducing a timely and important Bill.

I start by declaring something of an interest. As many of you will know, I am a recipient of a heart transplant myself. I was reflecting recently that, when I had my heart transplant by the excellent team led by John Dark at the Freeman in Newcastle, all those years ago, they said that the half-life of a transplant patient was about seven and a half years and I would be very lucky to last 30. There was the important rider of a new drug being introduced and, with a bit of luck, that would improve things. I do not know what has happened but, as that was now slightly over 30 years ago, I am particularly grateful for developing technologies in this area.

All I have done and been able to do over the past 30 years has been the by-product of a decision of either an individual or their next of kin, or both, to allow someone they did not know to benefit from the tragedy that they were facing from the loss, often sudden, of a loved one. So I come to this debate knowing and understanding the benefits for the patient or the recipient of a transplant, but of course I am very conscious that every recipient is one part of a process that involves either an individual making a commitment to the transplant programme by saying that, should their life be cut short, their organs should be used to help others to live—an act of great generosity—or, if not them by them, by their next of kin or others, so that others could benefit from their tragedy.

I appreciate that a register is important, but nothing is quite as important, in my view, as speaking to friends and relatives, and having an understanding of what they want and how to do it. This can mean either that the donor has made clear directly their view that their organs should be used or that the next of kin takes that view themselves. It can also mean people taking a decision in the most difficult of circumstances. For many, the decision will be sought at the point when all they can think of is the need to mourn, to cope, and to help their family and friends to do likewise. The danger is that if they take the entirely understandable decision to leave the decision about transplant for later, it will not be possible, because it is too late. I pay tribute, as others have done, to the members of the transplant teams—the co-ordinators and specialist nurses—who have the crucial and difficult task of talking to families, on both sides of the process, and taking them through the fraught times they are facing. They are vital to the success of the scheme.

Of course, as a recipient of a transplant, I support the Bill. It is not because it will transform everything—it will not—but because it is another essential step in making the process of transplantation more accepted, better understood and more common than it is at the moment. This may mean not just this change of policy; I hope it will not be the end but the continuing of a serious attempt to have a public, open discussion and argument about the importance, understanding and benefits of signing up to the transplant process, and all that that means for individuals, their families and friends.

What the Bill does not mean is a change to the position whereby, if anyone has made clear their wishes not to have any part of the transplant programme, they should not be overturned. But it opens the way for those who have not made their views known, still to be eligible, with safeguards, for their organs to be used in the event of their untimely death. It should therefore increase the number of transplants possible and reduce the number of otherwise avoidable deaths from the lack of available organs. For that it has to be supported. As I say, it will not end all problems, but it will be a step change in the movement to what some of us think would be a more rational use of the bodies we have been given after these bodies have ceased to be of use to us. I wish the Bill well.

Photo of Lord Leigh of Hurley Lord Leigh of Hurley Conservative 11:30 am, 23rd November 2018

My Lords, I join in the congratulation to the noble Lord, Lord Hunt of Kings Heath, on his promotion of this Private Member’s Bill. This is of course a very difficult and sensitive subject. First, one must recognise the importance, for those awaiting transplants and their loved ones, of increasing the number of donors as much as we can. I note that the number of donors has been steadily increasing, both in absolute amounts and as a percentage, for the last 10 years—from 771 in England in 2008-09 to 1,349 in 2017-18—and this is of course very welcome.

I have no medical training whatever but I wish to draw your Lordships’ attention to my register of interests, which discloses that I am a vice-president of the Jewish Leadership Council and the president of Westminster synagogue. As such, speaking as a progressive rather than Orthodox Jew, I point out that, as some of your Lordships might be aware, as in many religions there are many strands within Judaism. The Orthodox community would probably be guided by the traditional biblical prohibitions against making any cuts to a body. The body is regarded as a holy vessel, because it has housed a soul created by God. The body therefore has to be honoured, as much as if it still contained a living person. However, I have discussed this matter directly with the Chief Rabbi, Ephraim Mirvis, and he believes that all Jews would temper that view by recognising that there is a higher value of saving a person’s life, and that that trumps all considerations.

Needless to say, every rabbi has a view and the old saying that for every two Jewish people you will find three opinions seems as valid in this field as any other. I am also a member of Hurley’s local synagogue in Maidenhead. The rabbi there, Dr Jonathan Romain, points out that there is the issue of personal autonomy and the fact that our body belongs to us, not to the Government or the NHS. So while it may be very worthy to donate organs after our death, we alone should make that choice. This was before he concluded that whatever the ethics of personal autonomy, and despite biblical objections to making cuts to the body, saving life is the highest objective.

Other rabbis, particularly Rabbi Sylvia Rothschild, point out that, ethically, for any medical procedure a person should be informed about and understand what is to happen, including any risks, and should consent explicitly to each procedure. That would not be possible with an opt-out system, which she encapsulates by pointing out that presumed consent would arrogate to the state rights that were hard won, including the right to own and make decisions about our bodies. The right reverend Prelate the Bishop of Carlisle pointed this out. But she goes on to say—and others make this point—that perhaps the better way to increase the number of organ donors, which I believe currently stands at 24.9 million, is to invest in educating the public to understand the importance of registering if they wish to be a donor.

I am, however, supportive of this Bill, mainly because of the letter that the Minister, Jackie Doyle-Price, wrote to the president of the Board of Deputies of British Jews on 25 October in which she stated that,

“organs and tissue will not be taken without full consultation with persons in a qualifying relationship”.

The Minister specifically stated in that letter:

“There will always be a personal discussion with the family and full consideration … given to the views of a person’s loved ones”.

I thank her for that clarification but it does of course raise certain questions. First, should not this commitment be in the legislation rather than a side letter? Secondly, if this is to be a requirement, do we need the Bill? If in every case there will be a consultation before organ donation, which the letter confirms will require organ donation staff to go to extensive and far-reaching lengths to speak to family members, the opt-out does not really seem to change that much—particularly as there is a commitment that if family members cannot be reached, organs will not be taken from the deceased. I understand and am reassured to know that NHS organ donor teams will in any event need to talk to families as a matter of best practice, to try to determine whether the deceased had any allergies, history of drug abuse or other medical issues.

Leaving my reservations aside, I look to the Minster to confirm today that the terms of this letter will be honoured in full. This commitment is very important; of course, it raises some unresolved issues. For example, some families, such as mine, are mixed. My mother is Orthodox and may have reservations about organ donations, while other family members do not share this view. How will a consensus be reached? If any one person has reservations, will there be a prohibition? It is very hard for someone to determine another person’s faith and ethical views, and rational analysis of what a person would want could be very difficult and stressful at a moment of grief. It is much easier if the deceased has chosen to donate organs by opt-in, but that may be impossible, in reality, if we move to an opt-out system. Accordingly, we need legal recognition of the organ donor register, which is not in the Bill. Indeed, recognition is needed of other first-hand wishes, like the codicil of a will, which frequently specifies such matters in addition to selecting preference on the nature of burial or cremation.

In conclusion, a person’s decision to donate their organs to save the life of another human being is a wonderful act of humanity which deserves the utmost respect and support. Giving the state the right to take those organs, and depriving individuals of the ability to do so as a gift, is a very big step for our society to take. It must therefore carry with it respect for people’s ethical and religious views. I personally would not stand in the way of this Bill, but seek at this Second Reading the assurance from the Minister that I have set out in my remarks.

Photo of Lord Carlile of Berriew Lord Carlile of Berriew Crossbench 11:36 am, 23rd November 2018

My Lords, I too join in congratulating the noble Lord, Lord Hunt, and indeed the two colleagues in another place he mentioned, on bringing this Bill to Parliament. His characteristic modesty meant that he did not remind us of his enormous experience of the National Health Service, in the management context before he came to your Lordships’ House, as a member of the Government and as a Member of this House. That experience gives us some extra reassurance about the integrity of the Bill and what it proposes.

Debates such as this raise serious, and sometimes acute, ethical dilemmas. I think the ethical dilemmas in relation to the Bill are strongly affected by the fact that this issue is about saving life, not ending it. As your Lordships know from previous debates, I take a very different view on issues that affect the ending of life. I am happy to support the Bill, because it seems to make an entirely positive ethical contribution to the debates we have on such issues, perhaps uniquely, in your Lordships’ House.

I know that repetition rarely improves the quality of any argument. However, the support for the Bill, repeated from all parts of this House, and from all walks of life represented here, provides further important affirmation for it. We know that we are a somewhat unusual institution in this House; if a Martian were to walk in and look at the rules by which we come here, we would not pass the Martian test. Nevertheless, where else in the parliamentary world can we hold such ethical debates? Where else do we hear the kind of evidence that we are hearing in this debate? We very recently heard a wonderful speech from the noble Lord, Lord Elder, who told us of the heart transplant he had over 30 years ago. As we have seen today, it left him a very fit person: he has climbed more mountains than most of us have looked at. I hope he has also been able to enjoy some of the more traditional Scots remedies for exhaustion and other concerns.

We have also heard evidence from my noble friend Lady Finlay, who has spoken about the changes to the law in Wales and how effective they have proved. I think she gave some reassurance to the right reverend Prelate the Bishop of Carlisle about the increasing transplant figures in Wales.

I also look forward to hearing the contribution from my old friend the noble Baroness, Lady Randerson. She and I have known each other for many decades and I pay tribute to her determination. What she did in Wales on this issue was of great value, and I am sure she will provide very valuable evidence in a few minutes’ time.

That leads me to Wales. For many years I was an MP in a Welsh rural constituency and I am completely unsurprised that this system in the United Kingdom was first introduced in Wales. People in Wales tend to think more empirically than many in politics realise. Also, the devolution settlement in Wales, in which the noble Baroness, Lady Randerson, played a very important part, has made it much easier to bring to the statute book changes such as this in matters not reserved to the United Kingdom Parliament. Wales has been able, as has Scotland in some things, to be a trailblazer on this issue and has provided a great deal of evidence.

My belief is that the system in Wales has worked very well. My noble friend Lady Finlay described the advertising campaign, which means that everybody in Wales, unless they spend 24 hours a day asleep, knows about this system and it is discussed in families, as well as in more public forums in Wales. It has worked very well and has widespread popular support, as it will have in England.

I turn to the duties of the medical profession and return to something that the noble Lord, Lord Hunt, said at the beginning of his speech. He told us that he is fortunate enough to have just been appointed as a member of the General Medical Council. I was a lay member of the GMC for 10 years, albeit in its former incarnation as a much more parliamentary-style body than it is now. At the heart of the General Medical Council—I am sure this is true of the much smaller and very distinguished current council—are strong and heartfelt debates about ethical matters. The GMC translates those ethical decisions made by the council into guidance for doctors. If you look at its website, you come very quickly to the guidance currently given to doctors on after-death care and organ transplantation.

I say to the noble Lord, Lord Hunt, that one of the most useful things he can do in his first few weeks on the GMC is to persuade it that that guidance needs to be expanded somewhat so that the section relating to cadavers, parts of which can be used for transplantation, are much more explicit and so that the genuine concerns about that area are addressed. When doctors breach such guidance, of course it should be treated as serious professional misconduct which can bring the most condign remedies against them. However, for doctors to know where they are in these matters, it needs to be set out more explicitly.

The ethical responsibility is laid firmly on the regulator, the GMC, which passes it on to doctors. I hope that the General Medical Council will recognise that what I hope will be the passing of this Bill and the creation of a new system in England as well as in Wales means that it must be very vigilant about the behaviour of doctors in this area. There have been some horrendous cases—such as the Alder Hey case, which has not been mentioned so far in this debate—that have made one a little cautious about presuming that doctors can always be assumed to behave with superb ethical judgment. Sometimes they fail, and they need a stronger regulator to protect the public and themselves from such failures. I add that one of the principles that was often discussed when I was on the GMC was the responsibility of doctors to report other doctors who fall below appropriate standards. That failure, too, can be serious professional misconduct.

With those slight reservations, I support the Bill strongly, and look forward to England, once again, following Wales.

Photo of Baroness Brady Baroness Brady Conservative 11:45 am, 23rd November 2018

My Lords, as always, it is an honour to speak here and to follow such knowledgeable contributors as we have heard today. I congratulate the honourable Member for Coventry North West from the other place on a well-targeted, balanced and proportionate Bill, and of course I congratulate the noble Lord, Lord Hunt, on bringing it before us today. After all, on such a sensitive subject as organ donation, when there is any action or intervention from the state or a change in policy, change must be proportionate, justifiable and properly communicated.

We have all heard about the virtues of “nudge economics”, and indeed have seen its success in areas such as the opt-out for workplace pensions, which has had such an impact on saving rates. But of course, organ donation is more sensitive than pension savings, so we must tread carefully. The Bill does so. It does not impact on children or minors, or those who have already opted in, and, significantly, it will not impact on those who have not consented where reasonable evidence can be presented by the family that they would not have wished to be a donor. It concerns only those who have thus far taken no action to specify their wishes. This is a proportionate approach, and I hope that those in any doubt can be persuaded by considering the consequences of the Bill.

Quite properly, the Bill focuses on the treatment of and the impact on donors and their families. However, the benefits will be felt by the recipient, and those benefits are nothing short of the gift of life itself. We have heard today that three people die every day waiting for an organ, and thousands languish agonisingly on waiting lists. Upliftingly, however, statistics from 2017 estimate that 50,000 people—I emphasise that—are alive in the UK today because of organ donation. This is the impact that changes in policy towards donors must be weighed against. But enacting this policy change—which I believe we must do—should be only the first step. It needs to be followed by communication and campaigns to highlight the benefits—the life-changing, even life-preserving, impact that organ donations can have. This is for two reasons.

The first reason is to raise awareness and bolster support for the changes in approach. Changing to an opt-out regime should not be seen as an opportunity to take people by surprise. Even if, as I hope, the default position changes to opt-out, we should still try to deliver a regime that is as close to informed consent as possible. Secondly, the object of the Bill is to increase the number of organs available for donation to help preserve life. It should be noted that, for example, the US has very high rates of organ donation under an opt-in regime, while Greece on the other hand languishes near the bottom of the league tables despite having a similar opt-out regime to the one we are proposing today.

My point is that policy change is the beginning, not the end. There are cultural factors at play that we need to understand and speak to if we are to achieve the ultimate aims of the Bill, which are to boost organ donation while treating organ donors fairly and with respect. However, I am optimistic. As we have heard, Wales has seen an increase from 58% in 2015 to over 70% in 2017, since it introduced the opt-out regime, which surely gives us comfort that the Bill will be impactful and will change lives, especially if it is accompanied by a national campaign that can preserve confidence in the regime and boost organ numbers still further.

The British Medical Association is in favour of this change. Its members see the tragic consequences and wasted life every day caused by the status quo—consequences that can be mitigated by the Bill before us today.

Photo of Baroness Deech Baroness Deech Crossbench 11:49 am, 23rd November 2018

My Lords, at first sight this Bill is welcome and straightforward. It certainly is welcome, and appreciation is due to the noble Lord, Lord Hunt, and to all those who have promoted it.

I admit that my views are coloured by having been chair of the Human Fertilisation and Embryology Authority, dealing with associated but by no means identical matters. During my tenure, we had to deal with the Diane Blood case, where sperm was removed from her husband just before and just after his death without any consent. Of course, consent is absolutely central to the Human Fertilisation and Embryology Act. The lack of consent was got around by referring in part to the European law on the free movement of goods and services, which apparently included sperm. Nevertheless, the removal of the sperm was a flagrant breach of the law. The law was re-emphasised in the later statute, which pointed out that one cannot take anything from a body, alive or dead, without consent. This Bill goes the other way. Of course, sperm is not an organ, but I thought I should refer again to this notorious case, which highlighted the importance of consent.

As has been said, the BMA supports the shift to an opt-out system. In Wales, which has an opt-out system, consent rates rose from 58% to 72% in the two years to 2017, albeit reflecting very small numbers. So I give a hearty yes to the principle, but with a few words of caution and support. The BMA calls for the appropriate,

“publicity and engagement with the public”.

It highlights the need to balance increased donation with,

“the wishes and autonomy of those who donate”, and their families.

Somewhat surprisingly, the very expert Nuffield Council on Bioethics did not originally recommend a change to an opt-out system, because, as it said, there was a,

“lack of evidence that such a change alone would increase organ donation rates”, and because of ethical concerns about the operation of the scheme. Now, the Nuffield Council, accepting the situation as it is in this Bill, emphasises how it can be made to work ethically. It says,

“it is vital to have measures in place that encourage people to express and document their wishes about organ donation during their lifetime”.

A free choice in this or any other field is only legitimate if people are well informed and aware of the significance of their choice.

The Nuffield Council further says that,

“information about the donation process must be easily accessible”.

It is not enough to have a publicity campaign when this Bill is passed. It needs to be maintained on an ongoing basis so that those who might donate, but are not thinking about it now, are as aware in the future as those who benefit from the publicity that will no doubt accompany this Bill’s success.

The Nuffield Council also says that families must,

“stay at the heart of the decision-making”, process, and that their refusal of consent should be respected even where the deceased indicated a willingness to donate. To appear to have lower regard for the wishes of the family in their moment of bereavement would make their dilemma even more poignant and might make others suspicious of what might happen when a loved one dies.

The Nuffield Council suggests that a solution is to invest further in the network of specialist nurses for organ donation, who can support bereaved families. So the Nuffield Council is opening up the debate to the wider context and emphasising the need to maintain trust in the system. This is important when one recalls the Alder Hey scandal of retained organs 30 years ago, which led to the Human Tissue Act and dealt a serious blow to public trust in the handling of tissues and organs by hospitals—trust which has only now recovered and should not be risked again.

I should point out that one can also foresee legal disputes over the meaning of the provision in the Bill that there is no deemed consent where friends or family provide information that would lead a reasonable person to conclude that the deceased would not have consented to donate in his lifetime. That is in Clause 1(4) inserting the new subsection (6B) into the Human Tissue Act 2004. Any legal delay in decision-making would necessarily be fatal to the successful removal of the organ, which has to be done swiftly. I envisage that any information brought forward at the time of death that the deceased might not have consented, reasonable or not, would act to stop the removal.

There were also concerns on the part of faith groups, which I believe have been successfully addressed and handled. The Government should be thanked for listening. In Judaism, as the noble Lord, Lord Leigh, said, there is nothing more important than saving a life. Religious strictures yield to that, and donating organs is invaluable. Jews and some other faith communities have a commitment to bodily integrity that extends through life to death. Therefore it is critical for them to retain an element of donor and then family control in the system.

The letter from Ms Doyle-Price, Parliamentary Under-Secretary of State for Mental Health and Suicide Prevention—what a bag of responsibilities she has—which the noble Lord, Lord Leigh, referred to, was sent to the to the Board of Deputies of British Jews, dated 25 October, and was very welcome. The Board of Deputies represents mainstream Judaism. In that letter, the Minister confirmed that the concept of deemed consent only applies in the absence of a decision by the deceased or their appointed representative to consent or not consent, and that the method for signifying non-consent is not limited by the Bill.

The letter also said that, if an individual cannot be identified or a person in a qualifying relationship cannot be found, the organ donation will not take place, since they have to be consulted. Individuals will also be allowed to consent to donate organs selectively or conditionally. And a new faith option will be included in the organ donor register, where organ donors can request that their faith is taken into account when organ donation is in issue; the text on the register will say, “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”; and appropriate agencies will engage with faith and minority communities in developing guidance that addresses those concerns.

This letter provided faith and minority communities with the comfort that the change in the organ donation system will respect beliefs while helping to save lives. Along with the noble Lord, Lord Leigh, I ask the Minister to confirm that those assurances will be upheld.

Photo of Lord McColl of Dulwich Lord McColl of Dulwich Conservative 11:57 am, 23rd November 2018

I too congratulate the noble Lord, Lord Hunt, on bringing this Bill through. I should declare an interest as a former transplant surgeon. I found kidney transplantation the most exciting operation that I did in my 50 years of surgery. Kidneys would be flown in from all over the place in order to try to achieve a good match. One would connect up the vein and then the artery and to my surprise I found that some of the kidneys would start peeing on the table immediately, which was wonderful, but I noticed it was only the French kidneys that did this. I asked what it was about these French kidneys, and they said, “It’s the French wine, you know”. Well, in fact there were other factors involved.

At present, around 6,000 people are on the UK transplant waiting list, and last year over 400 people died waiting for a transplant. With so much at stake, it is not surprising that the question of how the donation system should operate is a source of strong emotion. The increased public awareness of the great benefits of donation is to be welcome, but—and there is a “but”—I have been rather taken aback by the way in which the evidence of what works, even the facts about the current law, has been manipulated and inflated by the media, in parliamentary debate and even in the consultation materials themselves. I do not think this is the way to support and maintain trust in our transplant system, nor to demonstrate commitment to evidence-based policy.

The 2011 Nuffield report, Human bodies: Donation for Medicine and Research, which has been mentioned quite frequently, strongly supported organ donation,

“where this is in accordance with the wishes of the donor”, but it did not advocate a change in the current law to the opt-out system. It concluded that,

“such a system could be ethical, as long as a number of potentially onerous criteria were met. People need to be fully informed in order to be able to make an active choice about whether or not to donate, which implies a long term and expensive commitment to public information and education. Families need to be appropriately involved—recognising not only that they are likely to have the best knowledge of their loved one’s attitudes to organ donation, but also that they themselves, in their bereavement, have a stake in what happens to the deceased person’s body. Critically, the system must operate in a way that ensures that public trust in the donation and transplant system is not undermined, for example through perceptions that the state is intervening to ‘take’ organs against family wishes. We only have to look back two decades to the outcry caused by tissue retention in the NHS to be alert to the way in which trust can be undermined, not least by failing to take into account the complex family and personal meanings associated with the body in death”.

In considering these questions of trust, the report also assessed, in more general terms, whether such a change in the law would increase donation. As it said,

“the quick answer is that no one knows. In contrast with the claims (confidently asserted over past months) that opt-out will save ‘thousands of lives’, the Department of Health’s own Impact Assessment, published alongside the consultation document, described the evidence on the impact of opt-out on donation rates as ‘inconclusive’ … Despite all the emotional rhetoric, the jury is still out on whether changing the law in this way will make any difference at all to the numbers of organs available for transplant”.

In beginning to assess the efficacy of presuming consent, we have to confront a misunderstanding about how donation works in England today. All too often, the assumption is made that only those who have signed the organ donor register are potential donors. Given that just 37% of the population in England have signed the register, it is thought that a shift to presumed consent will increase the pool of potential donors dramatically. Even if 10% of the public opt out, one would still increase the total pool of donors from 37% of the population to 90%. The difficulty with this logic is that it fails to appreciate that, at present, it is not only those who have signed the organ donation register who can donate. As Answers to Parliamentary Questions I tabled in July demonstrate, most donations in England at the moment come from families of people who have not left instructions about what they want done with their organs. To put the same point another way, at the moment, most organs are donated by people who have not signed the register. Critically, this means that clinicians in England are not limited to a pool of the 37% of people who have signed the register—they can approach the families of 99.3% of people. The missing 0.7% relates to those who have signed the opt-out register in England, and cannot be approached.

Rather than increasing the pool of potential donors, moving to informed consent reduces it. Whenever consent is presumed, some people take offence and sign the opt-out register. In Wales, prior to the instruction of its deemed consent law in 2015, there was no opt-out register, so 100% of people were potential donors. As a consequence of introducing presumed consent, however, 180,000 people, or 6% of the population, have now opted out. It is no longer possible for clinicians to talk to families about donation, when previously they could all have been approached. The organs of those 180,000 people are simply lost to the system. Rather than increasing the pool of potential donors, the introduction of presumed consent in Wales has involved spending public money to reduce that pool from 100% to 94%.

The truth is that, regardless of what system is operated at the point of donation, the key player is the family. Not having signed the organ donor register does not prevent doctors talking to the family about donation. Presuming the consent of the donor does not enable doctors to avoid talking to the family about consent. It makes no difference whether the donor had signed the register or had his consent presumed. At the end of the day, they will be unconscious, and the key conversation must take place between the clinicians and the family. In this context, the focus of our attention should be, as many speakers have said, on the family.

We know from the detailed reports published each year by NHS Blood and Transplant that the key factors associated with high consent rates are support for families by specialist nurses, and families knowing what the deceased person wanted. Consent rates are as low as 27.5% when families are not supported by a specialist nurse. They increase to 68% when a specialist nurse is involved, and to more than 90% where families are confident of the deceased’s wishes, as the noble Lord, Lord Patel, the noble Baroness, Lady Finlay, and my noble friends Lord Lansley and Lord Ribeiro have already said.

This is consistent with the experience of Spain, which, as has been mentioned, has sustained the highest donation rate for more than 20 years. Rafael Matesanz, the leading light of the Spanish transplant system, ascribes the well-known successes of the Spanish system to its focus on efficient systems and excellent family support. He is on record as calling the opt-out system a “distraction”. Despite being classed wrongly by some as an opt-out country, Spain operates neither an opt-in nor an opt-out register, and relies entirely on family authorisation for the legal basis of donation.

The official evaluation of the Welsh law was published in November 2017, two years after it came into effect. It showed that if you compare the resident Welsh donor rate for the 21 months before the introduction of the new system with the 21 months since, far from increasing, the numbers fell slightly from 14.6 donation decisions per quarter to 13.4 donation decisions per quarter. This is less than encouraging. Admittedly things have since improved, but it will take at least five years to show any meaningful trend. In assessing that trend, it will be critical to allow for increased investment in specialist nurses in organ donation and critical care beds, which has nothing to do with presuming consent but will increase donation rates. The official evaluation concludes that longer period of time is needed to draw firmer conclusions about the impact of changing the law.

In the context of 400 people dying while waiting for a transplant, and when we do not have limitless public funds, I find the prospect of spending millions of pounds of public money on presumed consent rather concerning. Any money that we spend on presumed consent, for which we have no robust evidence of success, we cannot then spend on things that we know will increase donor donations. We should wait to see what happens in Wales and spend any additional monies on more specialist nurses in organ donation and more critical care beds. If the Government are determined to back this Bill, it will be imperative to limit the potential scale of withdrawal from donation by assuring people on the face of the Bill that their families will be properly consulted. This statutory guarantee of consultation must be genuine and not limited to simply to giving the family a right to provide evidence that the family member did not want to donate, as in Wales.

Finally, I have another interest to declare. My daughter is a potential transplant recipient.

Photo of Baroness Randerson Baroness Randerson Liberal Democrat Lords Spokesperson (Transport) 12:11 pm, 23rd November 2018

My Lords, I thank the noble Lord, Lord Hunt of Kings Heath, for bringing this Bill forward, and for his excellent speech. We have heard moving contributions from across the House this morning. I want to thank the Government for their indication of support for the Bill. I also thank the noble Lords who chose to say kind words about me.

Of course, the important thing is that the greatest tributes must be paid to the donors and their families. There is, however, rare cross-party unity on this issue. That, you may think, is not surprising, because 80% of people say they would consider donation, but only 37% are on the donor register. Importantly, the percentage on the register from ethnic minority groups is a lot lower than that, and yet some of these groups face a greater than average likelihood of developing some of the illnesses that lead to the need for a transplant.

My party has supported this policy since 2002. At a personal level, I believe passionately that a system of presumed consent, a soft opt-out system, is the answer to addressing the gap between the number of donated organs and the number that we really need to save as many lives as possible. As the noble Lord, Lord Hunt of Kings Heath, indicated, I have some experience of this issue. As an Assembly Member in Wales, I was a member of the Health Committee. I was also spokesperson for my party on health issues in 2008 when the Kidney Wales Foundation and the BMA, together with other health groups, started to campaign for a system of presumed consent. I should declare that I was a trustee of the Kidney Wales Foundation from 2010 to 2012.

There was a well-co-ordinated campaign which had an impact on civic debate in Wales and on politicians in the Assembly. It led to the Health Committee deciding to do an inquiry. As part of that, we looked at evidence from across the world. We have heard a lot of statistics today but if you look at the evidence from across the world you will see that rates of donation vary considerably. But one thing you can draw out of it is that in countries with presumed consent, the rates tend to be higher than in countries without. When presumed consent is introduced, the number of donations increases over time as a percentage of the population.

As part of our inquiry, we also visited Madrid. Spain has been mentioned several times in this debate. There, we learned how soft consent works. We also learned that, as well as the legislation, you need the infrastructure to develop the system properly. You need improved training for staff as well as the best equipment. Meeting the clinicians, nurses and counsellors involved in the process in Spain had a huge impact and made us aware of the issues that we needed to tackle. In due course, after taking evidence from many groups, including patients and health campaigners, the Health Committee in the Assembly produced a report, which in fact at that point did not recommend a move to a soft opt-out system because some members were concerned that it might not be within the powers of the Assembly. These were early days for the Assembly and it was feeling its way.

Therefore, along with some other Assembly Members, we produced a minority report supporting a change to a soft opt-out system. Fortunately, the Health Minister at the time, Edwina Hart, was a lot bolder than some Assembly Members and decided to support the change, and she did excellent work in making it happen. It took a long time and years of consultation to get it right. The new Human Transplantation (Wales) Act was passed in 2013 but, even then, preparations took until December 2015, when the new system was eventually introduced.

I have some observations to make about that process. At the time, I was surprised at the extent to which the establishment—some in government and even some health organisations involved—closed ranks against the idea that the new Welsh Assembly could take such a radical path. It is a measure of how the debate has moved on—and I strongly welcome that—so that the Government now welcome it. In 2008, the Government’s Organ Donation Task Force, in its second report, unanimously opposed a change in the law. The UK Government have now accepted that the Welsh Government did indeed have competence to change the law. That happened during the coalition Government, when I was in the Wales Office, and it was not challenged.

In our original debates we were bolstered by the extent of the support from many faith communities. There were thoughtful contributions to the debate and overall support from faith communities. I very much hope that the right reverend Prelate the Bishop of Carlisle will study the Welsh experience in detail and look at exactly how much care was taken on the key and very important issues that he raised. The noble Lord, Lord Carlile of Berriew, is right that devolution in Wales made this a manageable initiative, with Wales being the first part of the UK to adopt the system. The noble Baroness, Lady Finlay, was right to emphasise the extensive public information campaign, and there has been no backlash, as some predicted. In addition, I emphasise that the public information campaign came not just from the Government but from third sector organisations, so it involved not just public money.

The fundamental objection is the fear of coercion. That has to be addressed through thorough information and careful explanation. It is called a soft opt-out system for a reason. By convention in this country we have always put the wishes of the deceased and their next of kin at the forefront so, whatever the legislation in this situation, it is important that that care over the wishes of the deceased and their relatives continues. You cannot rely on the law alone; you need a big investment in intensive treatment units and many more trained nurse counsellors. The conversation prior to or at the point of death is difficult but crucial. We cannot expect clinicians to do it as an adjunct to their work. Their mission is to save lives. It is very difficult for clinicians to be working to save a life at the same time as talking to the family about the point after death.

Difficult conversations need to be had as well in preparation in advance of death, where that is possible. Along with this approach to individual cases, you need, as several people have mentioned, a big national conversation, a campaign to encourage people to tell their loved ones what they want to happen to their body after death. I do not know if noble Lords have had those conversations. My son came out and told me that he wanted to donate his organs but I found it very much more difficult emotionally to raise that issue with my daughter, and it was the public information campaign in Wales that made me feel that I had a duty to discuss these issues within the family. So the open conversation is really important.

Evidence from Wales is also there to say that people also talk about not allowing cardiopulmonary resuscitation, which is often something on which there is confusion. Our system in Wales is being widely commended within the medical world, and we have evidence of overwhelming change in that too.

I want to spend a moment or two on the outcome because it is difficult to keep up when the situation is changing so fast. The Wales studies, prior to legislation, allowed for a 19% opt-out rate. In fact, as we have heard, it has been very much lower at 6%. At the same time consent rates in Wales have increased from 58% in 2015 to 72% in 2017, compared with 65% in England. Specifically, consent rates for brain-dead donors are now 89%, and for donors after circulatory death, donation rates have increased from 53% in 2015 to 68% in 2018.

The donation of eyes is always a particularly sensitive issue, and there is worldwide evidence to show lower rates of donation on those. The deficit between the number of corneas being donated and the number of transplants needed is increasing rapidly; it has gone up by 157% in five years. However, by increasing the donor pool across the UK we should be able in the long term to address that shortage.

Overall Wales now has the highest rate of consent for organ donation in the UK. There is also a hidden factor here that I draw to noble Lords’ attention: organs cross borders. There is anecdotal evidence in Wales that additional donations have helped in England, Scotland and Northern Ireland, and indeed beyond, in the EU, to produce better outcomes. The number of organ donors has gone up, from 60 in 2015 to 74 last year, and 44 in the first six months of this year. Wales has a population of only 3 million, so the numbers are necessarily small.

It takes time to build the new system but I am delighted that it looks now that, thanks to the change in Wales, things have improved there. I am very pleased indeed that it now looks as though, thanks to this Bill, England has the chance of following in the footsteps of Wales. I urge those who will, I hope, have the responsibility of introducing a new system to look carefully at the procedures and experience in Wales. As several of your Lordships have said, deemed consent is not the whole answer, but it is the golden key to unlock the door. This is an excellent Bill because, most importantly, it retains the key principle that organ donation is a gift, and it must remain freely given.

Photo of Baroness Thornton Baroness Thornton Shadow Spokesperson (Health) 12:26 pm, 23rd November 2018

My Lords, I first congratulate my noble friend Lord Hunt on introducing this Bill and all noble Lords on an excellent debate. As the noble Lord, Lord Carlile, said, this is the place where we have these debates—sometimes they are painful, sometimes they are excellent and sometimes they are very enlightening. I also thank the Library and others who have given us such excellent briefings in preparation for this debate, including the British Heart Foundation, the BMA, Fight for Sight and many others.

I was heartened by many of the contributions we have heard today, including those from the noble Lord, Lord Lansley, the noble Lord, Lord Patel, who mentioned the issue of organ availability among BAME communities, and the noble Baronesses, Lady Chisholm, Lady Sater and Lady Finlay. As my noble friend Lady Crawley said, in a moving speech which I know was in part based on her family’s experience, the blessing of modern science, which allows lives to be saved, is not fully realised because of the lack of organs.

I also congratulate the noble Baroness, Lady Brady, on her contribution—it is a pity that she is not in her place now—and I welcome the speech of the right reverend Prelate the Bishop of Carlisle. I think I understood that the Church of England is now moving, as it ever does, in a slow and considered way, in what I hope is the right direction and ending up in the right place.

I particularly welcome the remarks of my noble friend Lord Elder, and his bearing witness to the successful outcome of organ donation, for which we are all—particularly those of us in the Labour family—very profoundly grateful.

I think the noble Lord, Lord Leigh, came close to suggesting that the Bill gives the state the right to take organs, but I do not believe that is the point of this Bill at all. I think, as many noble Lords have said, that this Bill is part of a process of shifting the debate, the commitment and the resourcing of organ donation as well as the thinking about what it means and how it should go forward. I congratulate the noble Baroness, Lady Randerson, on her pioneering work. Personally, I am very happy to follow Wales in this matter.

Without doubt, across the parties it has been agreed that the current law needs to be changed, and I believe that this Bill is the best first step forward in achieving the change we seek to move towards an opt-out system. With so many people who will benefit, it becomes difficult not to support this Bill and it is an honour to be able to support it. As my honourable friend Jon Ashworth said in the House of Commons, it is Labour policy, and I am very pleased to say that is the case. I congratulate Geoffrey Robinson MP and Dan Jarvis MP on the wonderful speeches they made in the Commons, and the Daily Mirror for its tireless campaign to bring about this change.

Like many noble Lords, I have been an organ donor for as long as I have been a blood donor and could sign the forms. All of my family are donors and we have discussed our wishes in this regard. This legislation will mean less ambiguity at what is probably the most stressful and sensitive time for family members. The idea that adults and children die waiting for an organ that could save their lives is painful and unnecessary. The gift of giving is part of our human condition. Following the death of my father-in-law, Henry Carr, I know that my family felt proud of and comforted by the fact that people benefited—at least two or three lives were transformed through the gift of organ donation.

Given that the Prime Minister and the Government have expressed support for legislation of this nature at various stages, I hope that the Minister can assure your Lordships’ House that the remaining stages of the Bill will take place early in the new year. Doing so will send a strong signal to the outside world and bring hope to many families across our country.

Photo of Lord O'Shaughnessy Lord O'Shaughnessy The Parliamentary Under-Secretary for Health and Social Care 12:30 pm, 23rd November 2018

My Lords, I join the noble Baroness, Lady Thornton, and the noble Lord, Lord Carlile of Berriew, in congratulating noble Lords on a superlative debate on a vital and highly sensitive issue. It is a credit to this House. I thank the noble Lord, Lord Hunt, for bringing the Bill to the House and presenting it in such an authoritative way. I also thank MPs in the other place, Geoffrey Robinson and Dan Jarvis, both for bringing the Bill forward and for their collaborative work with the Government on it. I thank them and everybody else who has worked so hard to get the Bill this far for their ongoing dedication.

As has been remarked, the passing of the Bill would mark a significant step towards transforming and saving the lives of hundreds, if not thousands, of people in the UK waiting for a life-saving transplant. As my noble friend Lord McColl said, what is at stake could hardly be more important. While we have made great strides in recent years, we can and must do better, as we were reminded by the moving story of the noble Lord, Lord Elder.

The Government are committed to the Bill. In October 2017, the Prime Minister committed to changing the current system of consent to shift the balance of presumption in favour of organ and tissue donation in England. Her position gained support from leaders of all parties and Members in both Houses, for which I am truly grateful. As I said, the Government welcome the Bill and support it wholeheartedly as an additional and necessary measure to address the tragic death rates due to the lack of organs and tissues available for donation. As the noble Lord, Lord Oates, reminded us, public support for higher donation rates is already there, as it is among critical organisations in the healthcare family. Our job as legislators is to put in place a system that responds to public demand, but in an ethical, practical and effective way. I think that the Bill succeeds in this regard.

As has been said, the passing of this legislation is neither a silver bullet nor a magic wand, but I believe that it will play a significant role in changing the culture towards organ and tissue donation in England. Like the noble Lord, Lord Hunt, I pay tribute to Max Johnson and the family of Keira Ball. Max, whose plight captured the hearts and minds of the public and whose bravery has been remarked upon, was fortunate enough to receive the gift of life from nine year-old Keira Ball, whose family took the extraordinary and generous decision to transform and save the lives of others by making her organs and tissues available to those in need. We should never forget the importance of such gifts. I want to be absolutely clear that under the new approach set out in the Bill, organ donation will be a most precious and joy-giving gift, to use the phrase of the noble Baroness, Lady Crawley.

NHS Blood and Transplant does tremendous work in recognising the generosity of donor families in various ways, including by awarding them the Order of St John. I reassure all noble Lords that celebrating donation will continue; it is an important aspect of making organ donation part of our culture. Enough gratitude cannot be given to families who, at a time of such grief, take the big-hearted decision to transform or save the lives of others. I assure the right reverend Prelate the Bishop of Carlisle that, as I said, organ donation will always be a gift; that will remain the case. The decision of donation will remain: everyone will continue to be able to opt in or opt out of donation. To save more lives, we will still need more people to take the positive step of registering their decision to donate, so that if they die in circumstances where donation is a possibility, their organs and tissues can be made available to help those so desperately in need and the family can support that positive decision.

I should like to reflect on some important changes made to the Bill in the House of Commons where, as has been remarked, there was broad cross-party support. A set of amendments were made in the other place, including a power to remove novel forms of transplantation, such as faces and limbs, from the scope of the Bill. On this point, I want again to reassure noble Lords that the Bill will not change the list of organs and tissues currently considered standard donation. These are heart, lung, kidney, liver, pancreas, bowel, and tissues such as corneas, skin, bone and tendons. To ensure consistency with Wales and the proposal in Scotland, I confirm that for the rarer, more unusual types of transplants, known as novel transplants, as we will set out in regulations, there will continue to be a requirement for express consent to be given for donation to proceed.

If, following advice from medical experts and NHS Blood and Transplant, there is a need to update the list of novel transplants, we will consult on the relevant regulations, which will be laid under the affirmative procedure so that there will be full parliamentary scrutiny. On the point made by the noble Lord, Lord Hunt, I can go further today and confirm that the Government will lay a Written Ministerial Statement after any changes are passed by Parliament to give absolute clarity on how regulations have been updated and what they mean in practice for deemed consent.

We all know that this change in the law is important, but it is not the whole story. Making sure that the public are aware of the change and of the importance of organ donation is the critical change. The consent system needs to be accompanied by a comprehensive public awareness campaign to give the public time to understand the changes, have a discussion with their family and make an informed decision about whether they wish to donate their organs and tissues. The Government will develop easy-to-understand material, kept up to date with information about the options, what organs and tissues can be donated and other details.

I take seriously the points made by the noble Baroness, Lady Thornton, the noble Lord, Lord Patel, and my noble friend Lord Ribeiro about the importance of this campaign reaching the BAME community. A campaign on that front started in July but clearly, we need to do much more and have much greater opting in and awareness in these communities. We have had some success on this front with blood donation; we need the same kind of success in these communities with organs and tissues.

On the point made by the noble Baroness, Lady Randerson, I can confirm that, following Royal Assent, working with charitable and other groups—and learning very much from the Welsh example—we will launch a 12-month communication campaign to support donation. The new system will go live in 2020, after the initial transitional communication campaign has ended. However, the Secretary of State will continue to uphold his duty to promote organ and tissue donation, as set out in the NHS Act 2006. We know that changing the culture around organ donation requires continuous engagement with the public and is not a one-off exercise. I can reassure the noble Baroness, Lady Deech, that we are committed to follow-up campaigns in the years to come, and the noble Baronesses, Lady Finlay and Lady Randerson, whom I applaud for their extraordinary work in Wales, that we are keen to learn from the Welsh experience what works and what, if anything, we can improve on.

Another issue that noble Lords have raised is the importance of the family. As my honourable friend the Member for Thurrock highlighted several times during the Bill’s passage through another place, one of its important aims is to encourage everyone to think about what they want to do and talk to their friends and family about their wishes, so that they are left in no doubt about what their loved one would have wanted. As the noble Lord, Lord Elder, said, no consequence of the Bill could be more important.

Of course, some find such conversations difficult, but the benefit is that in the sad circumstances when a family is involved in discussions with the specialist nurse following a death, they do so in the knowledge that they are doing what their loved one would have wanted. Registering a decision on the Organ Donor Register is the best starting point for that conversation, and the most effective, as the noble Lord, Lord Oates, reminded us.

When families have not spoken to their loved one about organ donation, they are much more likely to reject donation. Some families come to regret that decision when they realise that they could have helped someone who was still alive. But let me leave you in no doubt that, as now, there will always be a discussion with the family on the best way forward. To reinforce the point made by my noble friend Lady Chisholm and in reply to questions from my noble friend Lord Leigh and the noble Baroness, Lady Deech: no family will be forced to agree with the donation if they are strongly opposed to it. My noble friend Lord Lansley spoke from great experience about the importance of good guidance for staff when implementing this regime. I will turn to how we will deal with that issue shortly.

As has already been mentioned by the noble Lord, Lord Hunt, and my noble friend Lady Brady, I confirm that children under the age of 18 will be exempt from deemed consent. That does not mean that they cannot donate but, as is current practice, children of any age will be able to register if they wish to donate or not donate their organs; the parents of the child will always be asked about the child’s decision to donate.

A third issue raised today, and an extremely significant one, is the importance of working with faith communities. I was pleased to hear the noble Baroness, Lady Deech, recognise that the Government have made concerted attempts to work with faith communities to build safeguards into the new system. We have announced various specific measures in the Government’s response to the consultation. For example, from next month, a new option on the organ donor register will allow those who register to ask that their family, or anyone else they wish, has a personal discussion with nurses and doctors about how donation can go ahead in accordance with their religious and cultural customs.

I can state categorically, to reinforce absolutely the point made by the noble Baroness, Lady Thornton, that the state will not take control of anyone’s body as a consequence of this Bill. We will update the current codes of practice on organ and tissue donation for healthcare professionals; in doing so, we will set out how religious and cultural considerations will form part of the discussions with the family and we will involve the different faiths in its development. NHS Blood and Transplant will supplement this with training for healthcare professionals. That work is progressing well and I reiterate the Government’s commitment to working with all faith groups to make sure it is successful.

I mentioned the importance of a new code of practice to implement the new system that we hope to move to; that will be developed by the regulator, the Human Tissue Authority. The existing codes will be updated to reflect the changes and, for ease, we will pull them together in a single code, on which there will be a 12-week consultation period. The noble Lord, Lord Carlile, pointed out that there will also be important implications for the professional regulators. I am sure that the noble Lord, Lord Hunt, will also want to take that on board in the new role we are all pleased to see him playing.

The issue of the NHS’s capacity was raised by my noble friend Lady Sater and others. The Government recognise that it is absolutely necessary for the NHS to manage the increase in donations and to carry out these life-changing operations. My officials have already started early work on planning with NHS England and NHS Blood and Transplant to make sure that the system is ready for the changes. Following these discussions, NHS England will consider the financial and service commissioning implications, so that we have the capacity and expertise to benefit from increased donations.

I will address a couple of issues raised by my noble friend Lord Leigh and reinforced by the noble Baroness, Lady Deech. They asked about the letter written by my honourable friend Jackie Doyle-Price explaining how the Bill would work. I emphasise that the letter is not a supplement to the legislation; it is an explanation of how the system of deemed consent will work in practice. The points that she set out on this hold absolutely. With their permission I would be delighted to share the letter with all noble Lords who are interested in the debate so that they can see the reassurances that we have provided. I believe it will provide some of the answers to questions raised in the debate.

My noble friend also asked whether the organ donor register should be given explicit legal consent. I do not think that is a necessity as the system has been working successfully for 30 years. The Secretary of State continues to have a duty under the NHS Act 2006 to make arrangements to facilitate tissue and organ donation. We believe the system is there; it is about using it to the maximum of its potential.

Before concluding, I will talk about the most important issue of all in getting this right, and that is staff. Specialist nurses for organ donation are highly trained professionals, usually from an intensive care or emergency medicine nursing background. When nurses join NHS Blood and Transplant, they initially receive extensive training over a six-month period. This covers all aspects of organ donation.

A key focus of the training is to enhance nurses’ skills in supporting acutely bereaved and grieving families, as this is an important, indeed essential, element of their role. When a patient has registered their decision to donate or when a family wishes to donate their loved one’s organs, the specialist nurse will skilfully and sensitively navigate the family through the detailed paperwork and mandatory medical history taking. When the family does not agree with the donor’s decision, the specialist nurse is trained to help the family come to terms with that decision. Experience from Wales tells us that this works and I can reassure noble Lords that we will make sure that there are enough highly trained staff to make the most of the changes resulting from this Bill. Our current estimate is that 27 more nurses would be required but, of course, if that number were to rise, we would make sure that they are fully trained and fully financed for the future.

The Government are confident that this piece of legislation will be pivotal in helping to transform and save hundreds of lives. Deemed consent in Wales is already showing promising results, with many more families now agreeing to organ donation when approached for this important discussion with specialist nurses. For those noble Lords concerned about the evidence base for change, we have seen in Wales, as the noble Baroness, Lady Randerson, pointed out, an increase in the number of deceased donors, from 60 in 2014-15 to 74 in 2017. Indeed, she talked about there being 44 in the first six months of this year. So there is evidence for its effectiveness, and our Chief Scientific Officer states in the impact assessment for the Bill that he can say with “moderate certainty”, that systems of opt-out, when introduced with a range of other support, such as logistical support, public awareness and so on, do increase donation rates.

I just pick up one point made by my noble friend Lord McColl on providing an opt-out in the Welsh system which in theory reduces the pool of potential donors. That means that, beforehand, there could have been donors who were having organs taken from them when they were not happy for that to happen. If anything, the Welsh system has provided greater individual autonomy while also increasing the number of donations. That seems to me to tick both the boxes that we would want for any system. The evidence for that is very powerful and gives us cause for hope and encouragement.

I conclude by reiterating the Government’s support for this Bill, congratulating the noble Lord, Lord Hunt, on bringing it forward and thanking all other noble Lords for their excellent contributions. If any noble Lords have continuing concerns about any part of the Bill, I would be more than happy to meet with them to discuss it. The Government are very keen to make progress with this. There is of course a risk that, as the time towards the end of the session get short, we will not manage that, which would be highly regrettable.

Photo of Lord Hunt of Kings Heath Lord Hunt of Kings Heath Labour 12:47 pm, 23rd November 2018

My Lords, I thank the Minister for that very authoritative response and to echo what he said about the time pressure that we face. I also thank all noble Lords who have taken part in what the noble Lord, Lord Carlile, was surely right to describe as a very moving but also ethically and intellectually based debate. Where else indeed could we do it? I am also grateful to the noble Lord for his advice on the GMC. I realise I am not going to be short of advice, but I am in that glorious honeymoon period where I am not actually responsible yet. On 1 January, I might hide round some corners if I see the noble Lord coming.

This has been a very moving debate. Essentially, it is a celebration of the gift of donations to help others. I thought that my noble friend Lord Elder put so aptly what this really means to so many people in our country. It is also interesting that the noble Lords, Lord Patel and Lord Lansley, said that they had changed their minds. I am in the same camp. I was responsible for organ donation between 1999 and 2003. I also had to deal with the aftermath of the Alder Hey debacle and I well remember some parents having to go through three or even four burial ceremonies as more organs and tissues of their children were found. I have therefore always taken a very cautious approach to this issue but, like the noble Lords, Lord Lansley and Lord Patel, I have become convinced that it is time to make a change. The evidence for presumed consent is stronger, I think, and I am very grateful to the noble Baroness, Lady Randerson, for what she had to say. Public opinion has changed, and the infrastructure has improved immeasurably. We should acknowledge that in relation to capacity, transplant teams and specialist nurses, there have been very significant improvements. I welcome what the Minister said about future developments, particularly the increase in the number of these key specialist nurses.

All noble Lords—the noble Lord, Lord Ribeiro, the noble Baronesses, Lady Finlay and Lady Chisholm, and my noble friend Lady Crawley—have emphasised that alongside the change, we need to have a public campaign. The noble Baroness, Lady Brady, said something which I thought was really important: no one should be surprised by the change. I think we should set that as our aim in the campaign. This is not a waste of money; this will have a big impact to the good on the public.

I echo what the noble Lords, Lord Patel and Lord Ribeiro, said about the shortage of donors from black and minority ethnic communities. I welcome the campaign this summer; we just need to build on it. I also welcome the discussions with faith leaders and the assurances given by Ministers. I echo and endorse those assurances and the contents of the letter that the Minister referred to.

The noble Lord, Lord McColl, and the right reverend Prelate the Bishop of Carlisle expressed some concerns that this Bill will have the opposite effect to its intended one. The noble Lord, Lord McColl, has grave doubts about the figures used for outcomes. Clearly, this is a significant step change; I acknowledge that. The right reverend Prelate thinks the balance between individual families and the state will be disturbed by it. It is a change, of course, but I believe that, with the safeguards, there is still balance in the provisions, and the change is being made in line with public opinion and the improvements in the infrastructure.

On organ trafficking, I agree with the noble Baroness, Lady Finlay, but I do not think this Bill is the right place to debate it. I pay tribute to the noble Baroness, Lady Deech, whose distinguished work in the area of human tissues is unequalled. I agree with her about the need to maintain trust. She referred to the Nuffield Council and its comments about how to make this work ethically; I agree with the points about easily accessible information, families being at the heart of decision-making and the network of specialist nurses. We heard a really reassuring view from the Minister about how that will be taken forward; clearly, we need to hold the Government to account on that.

As my noble friend Lord Elder said, this Bill is not a panacea. It will not, by itself, lead to a large increase in donations. However, it is a step change. It will help to raise awareness, encourage family conversations and change the culture, and that will lead to a higher consent rate in England. In that way, hundreds of lives will be saved. I am convinced this is the right way to go.

Bill read a second time and committed to a Committee of the Whole House.