Bill, as amended in Public Bill Committee, considered.
I beg to move, That the Bill be now read the Third time.
It has been an immense privilege to be a part of the campaign that has brought the Bill to its Third Reading today. I want to pay particular tribute to my hon. Friend the Member for Coventry North West (Mr Robinson), who has provided real leadership throughout the promotion of the Bill. He and I have sat through many meetings and many committees together. It has been his focus and his determination that has led us to this point where we have today an opportunity to do something very worthwhile. I know I speak for the whole House when I wish him a very speedy recovery from his recent operation.
I want to take this opportunity to pay tribute to other hon. Members who have provided outstanding support: my hon. Friends the Members for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott), my right hon. Friend the Member for Don Valley (Caroline Flint) and the hon. Member for North Devon (Peter Heaton-Jones), as well as the many other hon. Members, too numerous to mention, right across the House who have worked collectively to get us to this point today. I also want to pay tribute to Trinity Mirror. Its contribution to this campaign has been very significant and I am grateful for everything it has done. In particular, I thank Alison Phillips, Andrew Gregory, Michelle Klepper, Paul Millar and Owen Pritchard for their commitment to this important cause.
In the spirit of paying tribute and giving credit where it is due, I am looking very firmly at the Minister, who has responded in the most sensible, co-operative and constructive way. We have sat in a lot of meetings over many months. She has been an absolute pleasure to work with. The leadership that she has shown has been instrumental in ensuring we have the opportunity to pass this very important Bill today. I thank her and her officials for the important job they have done in getting us to where we are. I am also grateful—and a little relieved—that we can rely on the support of both the Prime Minister and the Leader of the Opposition. I am determined to ensure that we maintain this consensus on Third Reading today and send the Bill safely to the other place.
I want to reflect for a moment on why the Bill is so important. The bottom line is that it will save lives, but it is important to note that of all the people who died in the UK last year, only about 1% died in circumstances that would have made a donation possible, which means that, even though hundreds of thousands of people across the country are registered as potential donors, only a small handful will ever be in a situation that would allow a donation to take place. This is one of the main reasons why today in the UK there are thousands of people waiting for an organ donation and why every year hundreds of people die waiting. This loss of life is devastating, but it is not inevitable. Today we have the most precious of opportunities to save lives and give hope to many. We must not miss that opportunity. Moving to an opt-out system for organ donation, such as the one in Wales, will add thousands of names to the donor register, meaning that once the Bill is passed, hundreds of lives could be saved.
The Bill is not about the state taking control of people’s organs or shaming people into donating. If people want to opt out, that is absolutely fine, and I am entirely respectful of any decision, for whatever reason, so to do. No questions will be asked and there will be no hard feelings. Instead, the Bill is about making it easier for those who might wish to donate to do so. The current system requires people to take the time to discuss this most serious and difficult matter with their loved ones in order to reach a judgment about whether, in the event of some tragedy occurring, they would want their organs to be donated. It is incredibly important that, if people feel able to have that conversation with their loved ones, they do so. Many of us are guilty of not having had them and of putting this important task on hold. I believe that we can no longer afford to ignore this issue, that we must seek to increase the number of people on the donor register and that we must save as many lives as we can, and I believe that the Bill is an important way to do that.
That said, I acknowledge that the Bill is only part of the way to increase the number of people willing and able to donate their organs, so, in concert with the Bill, it is important that we also have an open discussion with our families and in our communities about the importance of making a contribution in this way.
I am very supportive of the Bill. It could be transformative in helping to save lives in our country. Does the hon. Gentleman agree that these conversations should be had in school so that children grow up understanding the role they can play in helping to save people’s lives and so that we encourage young people from an early age to think about becoming organ donors? The power of inertia he is talking about can make a big difference for good.
The right hon. Lady makes an important point. None of us who are here to support this Bill believe that it is in its own right a silver bullet that will solve the problem we are encountering; it is not, and therefore it needs to sit alongside some very important conversations on difficult issues. Many of us will potentially feel uncomfortable about having these conversations, but the right hon. Lady is correct: it is important that from the earliest possible opportunity we have these conversations with our loved ones so they are absolutely clear about what we would wish.
That point reinforces that, in addition to the Bill, all of us who believe in the value of organ donation should seek to ensure that as many people as possible come forward to register as organ donors. This Bill serves as another important opportunity to raise the profile of that issue and provides a platform for us to be having these conversations with our loved ones. As leaders within communities we have a responsibility and an important role to play in seeking to encourage people to have those conversations.
Time is short and I do not intend to detain the House for much longer as I am keen to make progress with the Bill, but I do want to take this opportunity to say a final word of thanks to Max Johnson, to Max’s mother Emma, and to the whole Johnson family. Many Members will recall that Max is the 10-year-old who fronted the Daily Mirror campaign on organ donation. He is an exceptional young man. He was kept alive by a tiny metal pump that was in his chest for seven months. I am absolutely delighted that, after finally receiving a heart transplant, Max is doing well. He has been given a chance to live a relatively normal life because of a donation made by a donor, Kiera Ball. I believe that Keira Ball and her family should serve as an inspiration to us all, and I would like to take this opportunity to make a request—I am sure the hon. Member for North Devon (Peter Heaton-Jones) will be happy to do this—that our collective thanks are passed on to the family of Keira Ball for their bravery and dignity and the example they have set. It has been an inspiration to us all, and I want to personally extend my thanks to the hon. Gentleman for the dignified way in which he has represented his constituents over a number of debates in this House.
Quite simply, we are here today to save lives—to save the lives of people like Max, but also of thousands of other people who would benefit from the change this Bill sets out. We have a rare opportunity at our fingertips to make this powerful and meaningful change. I hope very much that we do not miss the opportunity to save lives and that this Bill goes forward; I hope hon. Members will support the Bill.
I begin, as I suspect many will, by paying tribute not only to the hon. Member for Barnsley Central (Dan Jarvis), but of course to all those he mentioned who have played such an incredibly important role in bringing this Bill so close to, and I hope by the end of the day on to, the statute book. This is a piece of legislation whose time has come, because we live in a society that is less religious than ever before and we are ever more aware of what good medical science can do. It is of course vital that we respect the wishes of those who do not want their organs to be donated, but it is also vital that we have a conversation about the good that organ donation can do. I particularly agree with the hon. Gentleman’s central point that this is not a panacea or a silver bullet. It is a surprisingly small part of the conversation that we need to have, now more than ever, about what organ donation can mean for the people who need those organs so much.
As my right hon. Friend the Member for Putney (Justine Greening) said, it is right that we are beginning to have this conversation in schools, and it needs to be surprisingly detailed. Many people whose consent will now be presumed will not realise that their presumed consent applies not only to internal organs but to corneas, for example, and to other parts of the body. Some people will find that genuinely invasive, even though the donation of those parts would do a huge amount of good. This is one of the many reasons why this Bill’s time has come.
People who wish to opt out must have a conversation with their doctor and with their family, so that when the time comes, the information that they have opted out is known, understood and easily accessible. I was hugely envious of the progress that has been made on this in Wales. It is inevitable that the family of someone who went on to give their organs and make a huge a difference would be profoundly unhappy if it later came to light that the person had expressed a wish, which had not been discovered, that their organs should not be donated. This is an immensely complex area, and the Bill provides as many opportunities as possible to opt out in a sensible and informed way. We also need to ensure that, if those opportunities are taken, they are known about and understood, because time is often of the essence when it comes to taking organs and ensuring that they do all the good that they can.
There will be a huge burden on the Human Tissue Authority to ensure that this works as well as it possibly can, because it will be the regulator for this scheme. This is a challenge that we have not faced before, and I know that the HTA is confident of the good that it can do, but we should be careful not to put doctors in the difficult position of being asked to take advantage of the legislation. There will now, I hope, be deemed consent, but it will ultimately be down to the doctors to make the call on whether to proceed.
Does the hon. Gentleman agree that one way to ensure that there are not misunderstandings is for everyone who is concerned about organ donation to discuss it with their nearest and dearest so that they all know that the person is happy to have their organs donated?
I absolutely agree with the hon. Gentleman. This is all part of the broader conversation that we need to have. None of us wants to be in this position. We would all like everyone to have signed up to the organ donation register because they had already had that conversation. Given that we are where we are, however, the more people who have those conversations, the better.
There will be an increased burden on doctors as a result of this provision, not in workload but in decision making. If they have not been able to locate evidence of an opt-out, they will still have to be sufficiently content that they may take those organs that will be so important to others. We should be careful that the presumption of consent is not interpreted as a compulsion on a doctor to take organs. Of course doctors will not behave rashly; we know that they will be considered, cautious and sensible, not only because of the regulatory regime but because they would never seek to upset either the deceased or their family and friends in this situation.
I should like to conclude where I began, by saying that these are immensely complex matters and that this is not a panacea. It should be the beginning of a conversation to make more and more people aware of the huge good they can do, whether by donating corneas or kidneys. Such donations can now make a profound difference to multiple people, and even in moments of extreme sadness, families and friends can do a small amount of good. This Bill enables not only those individual operations, but hopefully a far broader conversation that will allow us to say that great good can be done and that presuming consent is the right balance and that, in the context of that broader conversation, we can ensure that people do opt out where necessary.
I commend this Bill and commend the bravery that some have shown in getting it through the House, because there is sensible and legitimate opposition to some aspects of it. I hope that the Bill will mark a serious bit of progress and will make the difference that everyone here hopes will be made to so many lives. In collaboration with the regulators and the medical profession, I hope that we can strike the right balance to get the maximum benefit and do not inadvertently cause pain and distress to people who are placed in a position that they would never wish to be in.
I thank and congratulate my hon. Friend the Member for Coventry North West (Mr Robinson) on introducing the Bill and on the constant campaigning that has led to the Bill reaching its final stages. As we heard from my hon. Friend the Member for Barnsley Central (Dan Jarvis), my hon. Friend the Member for Coventry North West is unable to be with us today, so I wish him well and I am sure that the whole House will want to wish him a good recovery. I thank my hon. Friend the Member for Barnsley Central for so ably standing in for today’s final stages and for his many years of campaigning, and I thank the hon. Member for Boston and Skegness (Matt Warman) for his thoughtful contribution.
Many hon. Members have brought this issue to the House over the years, and I want to pay tribute to my hon. Friends the Members for Mitcham and Morden (Siobhain McDonagh), for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott) and, again, to my hon. Friend the Member for Barnsley Central. I also commend the Daily Mirror on its sterling work, its awareness-raising campaigns and especially for supporting the case of Max Johnson, then a nine-year-old boy badly in need of a new heart. Thankfully, Max got a new heart due to the bravery of the family of Keira Ball, his donor, and it was great to hear from my hon. Friend the Member for Barnsley Central that Max is doing so well.
There is no doubt that we need more organ donors in England. As of 19 October 2018, a total of 6,198 people were registered on the active waiting list for a transplant, with 285 of them needing a new heart. That is why I am proud to support this Bill, which will hopefully help to deliver an increase in the organs available for donation and shift social norms towards donation.
The gap between the number of organ donors and patients requiring organ transplantation is higher in black and minority ethnic communities than in the general population. Earlier this year, I sat on a panel with my hon. Friend the Member for Wolverhampton South West (Eleanor Smith)—I am pleased she is here today—and my right hon. Friend the Member for Tynemouth (Mr Campbell) to review BAME blood, stem cell and organ donation and to hear real-life stories of why more organ donors are needed for these communities.
It is important to recognise that the campaign to increase organ donors will not end with this Bill. We need a comprehensive communications strategy that can reach everyone, but especially those who may not already be convinced by the call to be an organ donor. Will the Minister commit to working with Public Health England to establish a national media campaign to raise awareness and enable people to make an informed decision on organ donation? Any media campaign should be followed up regularly, to ensure that the message is spread far and wide. We will also require investment in health structures, including the workforce, to maximise the potential of a soft opt-out system. Will the Minister consider increasing the number of organ donation specialist nurses, so that families can be supported in their decision?
In closing, this Bill is so very important, but what happens next is crucial. Just one donor can save up to nine people and give them a future with their loved ones. That is why we need any future system to be supported by a national media campaign and increased resources for our healthcare structures, so that everyone has the information they need to make an informed and important choice.
It is always an immense honour to follow the hon. Member for Washington and Sunderland West (Mrs Hodgson). I associate myself with everything she said.
I have been asked to speak on behalf of one of our colleagues. My hon. Friend the Member for Eddisbury (Antoinette Sandbach), who cannot be here, is Max’s MP and she has asked me to say that Max has been inspirational to everybody, both locally and nationally, in fighting for change and that his work has been remarkable. As a nation, we need to understand how important the gift of organ donation is to others. Max has demonstrated how valuable that gift is.
Eddisbury is in an area of the country that was affected by the Alder Hey scandal, and my hon. Friend says that we must not fail to take into account the lessons of the past and that those affected by Alder Hey need reassurance that appropriate safeguards are in place. The wishes of the family must always be paramount. Without safeguards, the work of the Bill risks being undermined by people opting out. My hon. Friend is keen that we work together to ensure that the positive benefits of donation are made clear so that lives may be saved.
I am happy to act as a mouthpiece for my hon. Friend, because I, too, approach this Bill with the scars of my involvement in previous inquests. I was partially involved in the Marchioness inquiry. Horrific acts were carried out on the bodies of those who had died. I have always been interested—including, sadly, through my own experience, which we have already talked about this morning—in how we treat the bodies of those who have recently died. It is something that we really do not like talking about in our clean, hygienic society. Many people have never had personal experience of the bodies of the dead, and it comes as a tremendous shock when we do, often in the most dreadful circumstances because it is the person closest to us who we see lying dead.
I, too, approach this Bill with caution, but I pay enormous tribute to another friend on the Labour Benches, the hon. Member for Barnsley Central (Dan Jarvis), for steering the Bill through so sensitively. Those who, like him, have served bravely with the armed forces—or, as in my case, have helped support the armed forces from a safe place in London—have to have these conversations, and we have them when we are very young. It is important that the whole of society can learn from that. They are difficult conversations but they are not impossible. It is important that we get with it and say these things, however difficult it may be to do so.
The medical teams dealing with the recently bereaved family or the dying individual are themselves often traumatised by the experience and may not be the best people to have such sensitive conversations. Whatever else we learn from all the sharing we have done during this morning’s debates, training is key and we must be very careful about the training and support we put in place for hospital staff to be able to have those really difficult conversations.
I will close by speaking on behalf of another colleague who, though present, is not allowed to speak, namely my hon. Friend the Member for Bury St Edmunds (Jo Churchill). She has asked me to mention her constituent Liam Byrne, who is a campaigner. I should say in this context that he has also been a political opponent of my hon. Friend, but she speaks with great passion and vigour about him, and feels very proud of the campaigning he has done. He has received two life-saving liver transplants, and he strongly believes that we need to get on with this Bill and change the law before Christmas. He would like me, as I am the mouthpiece, and my hon. Friend to make it clear that time is not an option for people who need these organs.
It is always a pleasure to be called to speak in a debate with you in the Chair, Mr Deputy Speaker, and it has been a particular delight to listen to the hon. Member for Barnsley Central (Dan Jarvis), who is moving the Bill’s Third Reading on behalf of the hon. Member for Coventry North West (Mr Robinson), with whom I share two things. Clearly we do not share a political party, but we support both Coventry City football club and his excellent Bill, which he has diligently pursued through the House. It is a compliment to his skills that he has managed to secure such wide-ranging support across the House, and in a very sensitive area. I know that for Government Members this would be a free vote issue and I believe the same would apply on the Opposition Benches, given the issues it touches on. The fact that he has skilfully managed to assemble such a broad ranging coalition of support is a tribute to him, as is the work that has been done to assuage the genuine concerns some people have about this.
I am quite a religious person, and Members will know from some of my previous speeches the role I play in my local church. This Bill does not raise any issues for me, but I respect the fact that it does for some groups out there. I suspect that many Members will not have seen the reassuring email that has come into my inbox while we have been in the House today from the Board of Deputies of British Jews, forwarding a letter from the Minister setting out a number of reassurances and making it clear that the Board of Deputies is reassured by what has been said and does not see a reason for any objections on the grounds of its faith.
We are calling this Bill the Organ Donation (Deemed Consent) Bill, but we could just as easily call it the “Birthday someone is going to be around for Bill”, the “Job that will be kept Bill”, the “School that will be started Bill”, the “Grandchildren who will be seen Bill” or “The father or mother who will get to see their son or daughter graduate Bill”, because that is ultimately what this is about. In this debate, it is natural that we can sound as though we are just talking about anatomy, and I will probably sound as though I am doing that in a minute. It can sound as though we are talking about bits in our bodies being transplanted into someone else, and we can go through the list of things. The reality is that the benefit of transplants and making more organs available is that this gives people back their life or saves their life. We are talking about the person who no longer has to go for dialysis and is able to do other things with their life. We can keep such people alive but once they have been able to have their transplant, they are able to move on. So this Bill is very welcome.
I am clear that this Bill would not force anyone to have their organs transplanted against their stated will—that will not happen. Even if someone did not know about these provisions, protections have been well crafted by the hon. Member for Coventry North West, working together with the Government, that provide reassurance to anyone and any family who might have a concern that that would take place. It was a delight to serve in Committee where this was explored in some detail. It was made clear that people could provide evidence as to what the person’s views would have been; clear evidence could be provided showing that they were part of a particular religious group or movement that has an objection, or showing that they had raised their objection. For me, this is therefore very clear.
It is also clear that this Bill is not about taking organs from those who would lack the capacity to make that choice for themselves; clear protections are in place that would be available in respect of those who would not genuinely understand the provisions and what this Bill would mean. So for me, the Bill is welcome.
Just before I was elected, there was a well-known campaign in Torbay called the Green Star Man campaign. A chap dressed up like a superhero and went around hanging stars around the bay, and he tried to get people talking about what it was all about. He did not tell anyone until the great reveal. He had hung them off a palm tree and the town hall, and I think my predecessor, Mr Sanders, brought one up to Parliament and sat out on the Terrace with it to make it look like it had been hung here. I give him credit for supporting that campaign. It was all there for the big reveal, which was that the stars were the people who became organ donors. This chap was motivated by the experience of his daughter, who had needed a transplant, and by the fact that someone could give the gift of life when they could no longer give any other gift or make any other gesture like it. It is such a special and unique gift.
One key thing that drives my support for the Bill is that currently the conversation about organ donation comes up at what will be the darkest time in a lot of people’s lives. It will normally be in the case of a surprise or sudden death. Let us be candid: that is particularly true for those most likely to be candidates for organ donation—people in their 20s, 30s and 40s—who may have had no comprehension that something was going to happen to them. This sort of discussion will bring up some difficult memories, even for some Members present. To be sat down at that moment to have a conversation about organ donation is one of the most difficult things for anyone to do. The doctors need to do it at that time, but the Bill will rightly change the perception, and it will be done only if there is an objection. That will make the conversation at that moment easier.
I was lucky. I can remember when I was 13 and my grandfather had just died. My grandparents were getting older and my father sat me down—I did not think anything of the conversation at the time—and told me his views on organ donation and that if ever I was asked, I should say yes. My mother did the same shortly afterwards. Years later, they revealed why they had done that: their parents were getting older—my mother had lost both her parents by that point and my father’s parents were just about to turn 80—and they realised who it was who was likely to have to have that conversation if something happened to them. It would no longer be their parents, and it would probably be me. They felt that if I, as a 16, 17 or 18-year-old, was suddenly presented with that choice, it would be immeasurably harder for me to make it if I did not know what they thought. Knowing what they thought would make it much, much easier. They also shared one or two other thoughts about medical treatment in extreme situations.
I benefited from that conversation, but not many people find it an easy conversation to have, particularly if we think of someone talking to potentially teenage children about the fact that they may be presented with a situation in which their parents are in a desperate state medically and, if the parents’ views are not fully known, it might come to them, at 18, to make the choice about what happens. The Bill will make that process much easier and much simpler. That is very welcome and will have a genuine benefit in expanding the number of organs available for donation.
The provisions of the Bill cover off any technical concerns that any Member may have. Indeed, this is already the law in Wales. It has not caused particular problems in Wales and we do not see many people there raising huge objections to it. We have not seen huge demonstrations since it came into law there. I have absolutely no reason to believe that the implementation of these provisions in Torbay will be any more difficult than the implementation of the change was in Torfaen. The practical effect on the ground is there to see. Members who represent Welsh constituencies have certainly not come into the Chamber to argue that the change has been a problem. In fact, it is quite the opposite: they have come into the Chamber and made it clear that they welcome the fact that England and Northern Ireland will now go down the same path.
For me, this is a welcome and timely Bill. It is also one of the few occasions when, as a Conservative MP, I will stand up in the House of Commons and praise the Daily Mirror. It is not usually my favourite newspaper—I have been in it a couple of times and it has not normally been positive—but it deserves credit for this campaign because many ordinary working people across the country, the very people the Mirror likes to give a voice to, will benefit.
The hon. Gentleman is making an impassioned, fantastic speech. I do not know if he is aware that I have had a transplant. It came from a friend, a live donor, rather than from a deceased person. A transplant is hugely important to people who are on dialysis due to kidney failure, like I was, because of the pain they go through, what their families go through and the huge amount of care it takes, quite apart from the cost that is incurred by the national health service. That is why this measure is important and why it is working in Wales. I thank the hon. Gentleman for his contribution. Does he recognise that the old system required the consent of the next of kin, which is the difference that we are talking about today?
I genuinely thank the hon. Gentleman for that intervention. For many people, it will be inspiring to see a Member of Parliament who has benefited from a transplant playing a full part in our parliamentary proceedings, passionately representing his constituents and passionately serving his community in Birmingham. That is what this is about. I could have added to the start of my speech that this is the “Carrying on as an MP Bill”. Such examples are so important.
The hon. Gentleman is right that the issue is the consent of the next of kin. Although I can understand why that was the original process, I have always taken the view that if someone has expressed unconditionally that they wish to be an organ donor, that should be final. I have expressed that wish and it will now be on the record in Hansard. I hope nothing does happen, but I have said that even if my wife was presented with the choice, my view would be the final view.
The hon. Gentleman is right that people are not asked for their consent at a nice time when they can go home, have a think about it and then come back and have a cup of tea when everything is going great. It probably happens after they have received a phone call to tell them that their loved one is very unwell. They then get to the hospital and are sat down, and clearly the conversation is a very difficult one. It is then that the next of kin is asked to make the choice. For some people, it provides a bit of comfort at that moment that at least something good has come of the situation. Many people take at least some satisfaction in the fact that, despite what has happened to their loved one, they can still do something positive. However, for most people, it is not the easiest time to make that decision. The Bill will turn that around and make it easier.
Hopefully in future debates on this issue, more Members will be able to do what the hon. Member for Birmingham, Perry Barr (Mr Mahmood) has done and demonstrate exactly how transplants change lives, be they from living donors as in the case of his kidney transplant or from someone who has made the most special gift that they can make once they can give no more. It literally means people carrying on with their jobs, carrying on with their lives and still being there for their loved ones and their families, just as the hon. Gentleman is doing today in this House. Again, I thank him very much for his intervention.
A member of my office has recently had a transplant. I will not go into the details, because I am conscious that they are a member of staff. They are now in the process of coming back to work. We have certainly seen a great difference in them. They are looking a lot better, a lot fresher and a lot keener. Their view is that they have got their life back. Our thanks go to the family who made that difficult choice. There were occasions when the staff member concerned had to go up, only to find that an organ was not suitable. Finally, I think on the third occasion, the organ was suitable for transplant.
I have seen lives turned around and changed, and we will see more of that because of the Bill. It is genuinely a Bill that will save some of our constituents’ lives. Over the next few years, I doubt there will be a single constituency in the country that does not see at least one person have their life turned around by the provisions of this Bill.
The hon. Member for Coventry North West has been in the House for an incredibly long time, during which he has been in the Government and held numerous positions. Whenever he finally decides to retire, I suspect that he will rightly take the most pride in this Bill. I can genuinely say that it will be viewed as one of his legacies, and I am sure that the hon. Member for Barnsley Central (Dan Jarvis) is pleased that he has been able to play a role in bringing it to the House today.
I am conscious that I have now been going on for about 15 minutes, and I do not plan on trying to break one of my Friday records—not least given how much I support the Bill. I am pleased to have seen the general support in the House and to have had the chance to say a few words in support of the Bill. I very much look forward seeing it pass its Third Reading in the very near future.
It is a great pleasure to follow my good and hon. Friend the Member for Torbay (Kevin Foster), who made a typically thoughtful, telling and long contribution.
The question of organ donation, as with so many debates about what the Government can tell us to do with our bodies, can be contentious. There are deeply held beliefs on both sides of the debate. A move towards a system of presumed consent is exceptionally worthwhile, but the right to opt out must be clearly and consistently protected at every stage. There are three factors to consider: first, is there a clear need for the Government to pursue an increase in donations; secondly, does the available evidence suggest that an opt-out donation policy will lead to such an increase; and, thirdly, is such a policy compatible with the private right of the individual citizen to ultimate ownership of their own body?
On the first question, I believe that the only answer is a resounding yes. Every year, hundreds of people die waiting for a transplant and many thousands more languish on waiting lists that create a bottleneck for life-changing—indeed often life-saving—surgery. Even worse is something that I see my own constituency and have raised with the new Birmingham and Solihull clinical commissioning group: black and minority ethnic patients, who are more likely to suffer diseases that require transplants, such as kidney diseases, face an even more acute shortage due to lower take-up of voluntary donation among their communities. Such insufficiencies and inequalities demand that we address them in whatever way we can.
It was a great pleasure to see my good friend the hon. Member for Birmingham, Perry Barr (Mr Mahmood) in the Chamber and to hear his intervention. I know the circumstances of the individual donation, and the story is even more remarkable than we have heard in the Chamber today. The hon. Gentleman’s vibrancy, which we see day in, day out, is a testament not only to him, but to the medical staff who helped him through the operation.
Of course, there has been a consistent trend of more people opting in under our current regime. Indeed, there are more than 25 million people on the NHS organ donor register, and we thank every single one of them, but it is an unfortunate fact that only a fraction of people die in circumstances that make their organs suitable for transplant—just 1% percent of that 25 million, according to NHS figures. Would a shift to presumed consent address that problem? The available evidence is promising, although not wholly conclusive, but I am willing to go with an act of faith.
Several countries that have moved to an opt-out donation model have seen a rise in donations, including—this is most pertinent to us—Wales, which introduced an opt-out system only recently and has seen increases in both deceased donors and transplants. Countries such as Spain have coupled the approach with other measures, such as heightened public awareness campaigns and an overhaul of the infrastructure underpinning the donation system. That obviously muddies the waters, as does the fact that any uptick in donations often occurs years after the switch to the new system. In some countries, such as Brazil, donation levels have actually fallen slightly after the change to the new system. However, I feel that there is enough positive evidence to suggest that a switch to an opt-in system for England would be very worthwhile, provided that the rights of individuals to refuse consent are adequately safeguarded.
It is important that the deceased’s family has a role to play. For example, if they are aware of an expressed opposition to donation that was not formally registered with the NHS, I believe that they should have the right to register it. Over the longer term, the right to opt out must be reinforced by robust protections to ensure that doing so remains a simple and easy thing to do, with no questions asked. The hon. Member for Barnsley Central (Dan Jarvis) was very particular about that, which I was grateful to hear.
Individuals who refuse consent should not be subject to any pressure to change their minds or asked at intervals to think again. We must never lose sight of the fact that our bodies are ours, however valuable and useful they might be to others, and that they are not the property of the state in any way.
In summary, I support the Bill. I have considered the evidence, and while it is contradictory in part, we should look at the examples from Wales and Spain. The system should be married up with the correct procedures, encouragement and public information, and an under- standing that it is our body. I believe wholeheartedly that this Bill should be passed and that there should be a fundamental change in this area.
It is a pleasure to support this important Bill. I grew up in Huddersfield, and Barnsley are our great rivals, but despite that it is a pleasure to congratulate the hon. Member for Barnsley Central (Dan Jarvis) on this hugely important Bill. As my hon. Friend the Member for Solihull (Julian Knight) said, it protects important rights. He made the incredibly important point that our bodies are not for the state. They belong to us, and it is essential that we have the right to say no if we have objections, but I believe that the Bill includes safeguards to achieve that.
The hon. Member for Barnsley Central mentioned the case of Max Johnson, just nine years old, whose life was saved by a heart donation from Keira Ball, who had been tragically killed. I wonder whether I might also mention the Leicestershire case of Albert Tansey, whose life was saved by a heart transplant at the amazing Glenfield Hospital when he was just four years old. The hospital is home to the now saved children’s heart unit, which we have all strongly supported in Leicestershire. Thanks to the miraculous work done at Glenfield, he is now enjoying his ninth birthday, and his family are strongly in favour of the Bill. It has already been said that this could be called the “Getting on with your life Bill”, or the “Being a Member of Parliament Bill”, but it is also the “Enjoying your ninth birthday Bill”.
Although this debate could be rather bleak, there is some good news: 50,000 people are alive today thanks to organ transplants, including the hon. Member for Birmingham, Perry Barr (Mr Mahmood), who is looking very well on it, I must say. The number of people registered as donors is rising—we thank them for that—and the numbers on the transplant waiting list have fallen steadily over the past eight years. However, the Bill is still necessary because some people are missing out. Between 2005 and 2010, some 49,000 people had to wait for an organ transplant, and 6,000 died while waiting, of whom 270 were children. We could save more lives if we had more donations. I am particularly conscious that for some groups, particularly ethnic minorities, it can be particularly difficult to find a transplant. I have seen the good work done by the NHS and visited a temple just north of my constituency to see the outreach work it is doing to try to find more donations, but none the less there is still a big problem.
In 2008, only one of the top eight countries with the greatest number of organ donors per capita had an opt-in system. All the others had opt-out systems, so there is strong evidence that such systems can increase the number of donations. In 2017, we know that 1,100 families refused to allow an organ donation because they were not sure whether their relatives would have wanted to donate. My hon. Friend the Member for Torbay (Kevin Foster) made the important point that asking people to make a proactive decision to donate at an incredibly emotional and difficult moment is harsh and unfair. I think that many families would later come to value the fact that a loved one’s organs had gone on to help someone else to live.
Does my hon. Friend agree that sometimes in that situation, relatives could make a decision that they later regret, because in the emotion of the moment, they might not make the decision to say, “Let’s go ahead and make the donation”?
I absolutely agree.
Let us also think about the medical staff who need to have these incredibly difficult conversations. A long time ago, I was a medical student. I remember the first time I ever saw someone who had died and the medical staff’s incredibly difficult conversations with his family in the hospital. Imagine then having to ask the family to make the donation of an organ to save another life. It is almost an unbelievable thing to have to ask people to do.
We know that, since the introduction of the opt-out system in Wales, the number of deceased donors is up from 60 to 74. Those are small numbers, but none the less that is a rise of 23%. It is early days, but the opt-out system does seem to help. Obviously we need the safeguards that my hon. Friend the Member for Solihull described, but at the end of the day, the Bill will save lives—it is as simple as that.
It is ironic that often on a Friday, when there are relatively few of us here, we talk about matters of life and death. This is one of them. This Bill will save lives. It means more careers, more lives and more ninth birthdays. If I can have a moment of poetry, it is what one poet called the
“million-petalled flower of being here”.
This Bill will save people’s lives, and it is a pleasure to support it.
The reason that I take a particular interest in this Bill has already been alluded to by many Members on both sides of the House, but I make no apology for rising once again to refer to the story involving my constituent.
Before doing so, may I join others across the House in wishing the hon. Member for Coventry North West (Mr Robinson) all the best in his recovery? In many ways, we would not be this far in the process were it not for him, and I pay tribute to the way he has led the Bill through the House. It has been my pleasure to speak at each stage of the Bill’s passage and to serve on the Bill Committee. I also thank the hon. Member for Barnsley Central (Dan Jarvis) for his kind words, which I will pass on to my constituents.
It is to them that I turn now and the story that has been alluded to but is worth retelling. If there is anything about this Bill that we need to keep in mind, it is that it is about people—it is about individuals, it is about saving lives and it is about the double-edged sword of a life being saved, but in order for that to happen, a life has to tragically be cut short. It is one such life that I wish to retell the story of.
On a Sunday morning last year on 30 July, there was a road traffic collision on the A361, otherwise known as the north Devon link road. It happened only about five minutes from my constituency home. Tragically, we had four fatalities on that short stretch of road in the space of a week. To go off slightly left-field, I am delighted to say that since then, because of persistent campaigning by many people, the Government have granted £83 million for major improvements on the road, mainly because of the safety concerns and the poor accident rate on that particular stretch.
Last summer, an accident took place involving two vehicles. Occupants of both were seriously injured. Before going any further, it is worth recognising that those who survived this accident are still living with its aftermath, and my thoughts remain with them nearly 18 months on. One of the cars involved in the accident was carrying members of the Ball family from Barnstaple. There was Keira Ball, her younger brother Brad and their mum Loanna. The paramedics, the emergency services and the NHS staff at the four different hospitals that the victims of this accident were taken to all did their best work, but sadly, young Keira Ball passed away two days later on the Tuesday afternoon. She was just nine years old.
Keira’s mother and brother were very seriously injured in the accident, and they were in hospital. They were not able to make decisions at this time, so the agonising decision came down solely to Keira’s father, Joe. He took the decision—and what a brave and courageous decision it was in these circumstances—that, in the midst of this tragedy, he wanted the life that had just been so cruelly taken away from his young daughter Keira to be given to somebody else, so he took the decision that Keira’s organs should be donated.
Following that brave decision, four people are alive today who otherwise almost certainly would not be. This is the power and the strength of organ donation, and this is why it is incredibly important that we get this Bill on to the statute book today: it is about these people. Keira donated her kidneys, her heart, her liver and her pancreas. One of her kidneys was given to a man in his 30s who had been on the waiting list for a transplant for two and a half years. The other kidney was given to a woman in her 50s, and she had been on the waiting list for nine and a half years. A young boy received Keira’s pancreas and liver.
Then we come on to Keira’s heart. It was given to a very brave and very sick 10-year-old boy, who has since very much become the figurehead of this campaign. I refer of course to Max Johnson. Max has been mentioned, quite rightly, so many times in this House and so many times during the passage of this Bill through Parliament. The media are calling it, quite rightly, Max’s law. I have a slight preference for it to be Max’s and Keira’s law, but it is actually the law for everyone who has found themselves in this situation—every parent, every relative or loved one, who has had to make the sort of agonising decision that Keira’s father made on that day—and for everyone who has benefited from the donation of an organ from a deceased person, as Max Johnson did.
It is Keira’s story, it is Max’s story and it is a story of how a very brave and, I am sure, a very difficult decision to allow Keira’s organs to be donated has given life to other people who would otherwise almost certainly not be here today. Surely, of all of the arguments for supporting this Bill and for securing its swift passage on to the statute book, that is the strongest one—that this Bill is about saving lives. It is about giving people the gift of life just at the point when it might be taken away from them, and just at the point when it has been cruelly taken away from somebody else.
More organs are going to be available for donation as a result of this Bill, and that is crucial. We have heard some of the statistics from other Members, so I will not rehearse all of them, but I want to mention a couple of figures that I think are important. According to the latest NHS statistics, only 1% of people who die each year do so in what the NHS describes as “suitable circumstances” to allow their organs to be donated. I think we can probably guess, without going into too much detail, what lies behind that careful use of language. It means that only a very tiny proportion of people who die each year are not only suitable to have their organs donated, but have signed up voluntarily to the organ donation register.
If we cast our minds back to O-level or GCSE maths— depending on our ages—and the world of Venn diagrams, we can see that we need to have a lot of people in the middle bit where the circles intersect to ensure that enough organs will be donated to save lives. Because of the current way in which the law operates, that bit in the middle is not big enough: it does not have enough people in it. Bluntly, we do not currently have a system that allows for enough organs to be available to save enough lives. This Bill changes that, and that is why it is welcome.
My hon. Friend is talking about the circles in a Venn diagram. I just make the point that many people would actually like to give their organs so that other people could live, but their relatives simply do not know that at present. This Bill is one way of solving that terrible problem.
My hon. Friend makes a perfect point. That is indeed the case, and another reason why the Bill is incredibly important.
I commend the bravery of Keira’s father in making that decision at the very difficult point of the end of her life. Importantly, the Bill will allow families to discuss this issue before things get to that stage and, as has been said, a difficult decision made at a difficult time could become somewhat easier to confront, and other lives could be saved.
That is correct. As someone said earlier, we do not like talking about this stuff, although we should be talking about it more. If the Bill provides us with such an opportunity, that is another reason why it needs to be welcomed.
Although three people a day die from a lack of suitable organs, the situation is worse among people from the BAME community who are more likely to suffer from illnesses that require an organ transplant. The National BAME Transplant Alliance has highlighted that issue, and said in its submission that consent to organ donation must be increased among ethnic minority communities, because transplants are more likely to be successful when the donated organ is a closer match to the recipient. Sadly, however, within that community there is a lack of organs available for donation. That has to do with many issues, including a lack of willingness —perhaps for cultural reasons—to discuss the issue within the family, or perhaps a lack of access to knowledge about the way that the organ donation system works. There are a number of issues, but is simply iniquitous that the BAME community should suffer more, for whatever reason, and that is why the Bill is so welcome and necessary.
That is a key part of this Bill because it will allow BAME communities to discuss this issue. I know that there are barriers in terms of some religious thought on this matter, and we are working with the kidney transplantation unit at the Queen Elizabeth Hospital in Birmingham to try to make people aware of this issue during Ramadan and other periods. More such campaigns would enable us to get the message across to people that organ donation saves lives, and in terms of religious matters, we have a letter from the Board of Deputies to recognise that. We need more support from within the Muslim community to say that this is permissible.
That is an extremely interesting point, and just the hon. Gentleman raising the issue in such a way will help to raise awareness. We are doing part of the job merely by discussing it in this way.
I have fully supported the Bill through all its stages, and it is significant that it sailed through Committee in record time—I think we were there for about 35 minutes. There were no amendments, which is a legacy of how well it was drafted in the first place, and a tribute to the fact that the Bill enjoys cross-party support. However, one issue raised in Committee is worth mentioning again, although I am sure the Minister will address it in her remarks. To understand it we need to look to Spain, where a similar Bill to the one under discussion has been in force for some little while. In Spain, it appears that the legislation has significantly increased the number of organs available for donation and saved lives, but—and this is an important but—the Bill introduced not only a change to the legislation, but additional Government investment to ensure that people could access an education and information campaign and understand that the law had been changed. The campaign encouraged people to hold conversations with their families, and to ensure there was no misunderstanding, and that the Government or the state were not saying “We’re taking your kidneys and liver from you whether you like it or not”. It was extraordinarily important that the public information campaign went hand-in-hand with the change in legislation.
In Committee, the Minister said that the Government would commit £30 million over three years for a public information campaign, with an additional £2 million for one-off spending at the start when there will be a spike in interest and administration. That is most welcome. However, in fully supporting the Bill I gently make the point that I look forward to hearing confirmation from the Government that they will support the Bill with the necessary financial backing.
It is very important not only that everyone has their say but that we pass the Bill in the time available, so I will conclude my remarks. I fully support and welcome the Bill. Many people deserve credit for getting it to this stage, not least the hon. Member for Coventry North West, the hon. Member for Barnsley Central and many others. The Government have supported the Bill. The Minister has been tireless in personally driving it forward and I thank her for that. I also thank the other parties in this House—the Bill has received cross-party support. It is refreshing in these times, when we seem on a daily basis to talk about conflict in the political arena, that we have an issue that has rightly brought all sides of politics together. I join my hon. Friend the Member for Torbay (Kevin Foster) in thanking the Daily Mirror. That is perhaps unusual on the Conservative Benches, but, working with Max Johnson’s family, it has been instrumental in pushing this forward.
It has been a pleasure to support the Bill at every stage. I have done so while thinking of Max and Keira. It is their Bill. Let us not forget that it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people are alive today who otherwise might not be. I can think of no better reason than that to ensure the Bill reaches the statute book as soon as possible.
It is a huge pleasure to be in Westminster today. I genuinely believe that the vast majority of people who stand for Parliament do so because they want to make the world a better place. I have to admit that on many days I wonder, when I sit on the train on my way home, whether we have actually achieved very much in that regard. Today, however, we have done three exceptional things.
The first Bill will enable tenants to take action against rogue landlords. It will make a real difference to the lives of many of my Chelmsford constituents. The second Bill will mean that mothers will have their names on the marriage certificates of their daughters, a step forward for equality that should have happened many years ago. It will also mean that anyone who wants to can join their partner in a civil partnership, which is so much the right thing to do. Finally, I am so proud to be here for this Bill on organ donation and a register. I know that lots of people, when they look at our proceedings, think that there are only a tiny number of Members in the Chamber. Actually, there are many, many more hon. Members in Parliament today just in case a vote is needed.
I would like to put on record my huge thanks to the hon. Member for Westminster North (Ms Buck), my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) and the hon. Member for Barnsley Central (Dan Jarvis), who have helped to drive these Bills through Parliament. As an Essex woman MP, I give huge thanks to my hon. Friend the Member for Thurrock (Jackie Doyle-Price) on the Government Front Bench, who as the Minister responsible has steered the Organ Donation (Deemed Consent) Bill. I also thank the other woman Essex MP, my hon. Friend the Member for Castle Point (Rebecca Harris), who is hiding behind the Speaker’s Chair right now—she has actually just come back—and who as Whip has been key in making sure there are lots of Members here to support the Bill.
I am pleased to support the Bill because organ donation saves lives. For many people, it is the only way their life can be saved, but the system needs changing. According to statistics from the British Heart Foundation, as of last Friday, 6,198 people in this country were waiting for an organ donor, and 285 of those were waiting for a heart transplant. The good news is that more and more people are putting themselves on the register, which is excellent, but the sad news is that it is not keeping pace with the number of people who need a transplant.
Eight out of 10 people in the UK support organ donation, but only one in three are on the register. We need to change that, especially for people from black and minority ethnic communities—one in five of the people who die while waiting for a transplant are from those communities—so I thank the Minister for the helpful toolkit in our inboxes today. It will help us as Members of Parliament to reach out to those communities and give them the necessary information and reassurance to encourage them on to the register.
My hon. Friend rightly references the very important toolkit, which will be useful in sharing information about this new policy with our constituents, but does she agree that for it truly to work we need to educate people about why the Bill is so vital?
I thank my other fellow Essex MP for his excellent point. Essex MPs get things done, as do we all.
I try to think about what has worked in other countries, and it is clear from other countries that an opt-out system makes a difference. As my hon. Friend points out, however, it must go hand-in-hand with information systems and improving the resources available to our excellent health service staff. That is key to ensuring best practice. In countries that have introduced an opt-out system as part of a wider package of measures, it is associated with an increase in the number of donations and lives saved.
I support the soft opt-out system, as it is called, under which family members can say that they do not want their love one’s organs used for donation. It is important that family members have that choice. I have been struck listening to family members who have made that difficult decision after losing a loved one—we just heard the beautiful example of the young lady whose heart went to Max—talk about how much pride and hope it has given them to find out that their loss has resulted in many other lives being saved. That said, it is important, where family members feel strongly that a loved one’s organs should not be used, that they have the option of that soft opt-out.
Having said all that, I believe that with a clear and detailed communications strategy following the introduction of the system, and with investment in the right health structures to give our outstanding NHS workers the resources they need, the Bill will make the world a much better place for many of our constituents. Thank you Mr Deputy Speaker, for making sure we all came here today to pass these Bills.
This private Member’s Bill has my full support. It was introduced by the hon. Member for Coventry North West (Mr Robinson) and inspired by the Daily Mirror campaign to find an organ donor for a little boy from Cheshire, Max Johnson, whom we have heard so much about this afternoon from the hon. Member for Barnsley Central (Dan Jarvis) and many others.
In preparing for this debate, I was saddened to learn of just how many people lose their lives due to the lack of a suitable donor. In adopting this Bill, England would have a similar system to Wales, essentially an opt-out system where consent would be presumed unless otherwise stated.
There is already overwhelming public support for organ donation. According to the NHS Blood and Transplant website, over 80% of adults in England say they would definitely donate or would consider donating their organs, but only 37% of the UK population have registered as a donor on the NHS organ donor register.
While the then nine-year-old Max was the inspiring story behind the Daily Mirror campaign, at any one time there are more than 6,000 people waiting to have life-saving transplants. I spoke to one such person, a chap in my local West Cumberland Hospital, during his dialysis treatment in our new renal unit just last month. There are still many desperately sad accounts of lives being lost, with families destroyed and children without their parents.
The Johnson family spent almost eight months on a transplant ward; they said it was a “rollercoaster” of a year, sometimes worrying that their son’s weight might have dropped too low to continue on the transplant list. After 196 days of waiting, a tragically fatal car crash resulted in a suitable heart donation from a little girl, Keira Ball. I echo the comments of the hon. Member for Barnsley Central, and of my hon. Friend the Member for North Devon (Peter Heaton-Jones) in his emotional speech, in expressing admiration for Keira’s family.
Being a mum of four daughters myself, I was devastated to learn of other accounts, particularly that of Jade Gulliver’s sister. Jade, a mum to two little boys, died at just 27 while waiting for a liver transplant. She had viral hepatitis. Her sister said:
“You hear about transplants on the telly, but you never expect it to happen to someone you know. She kept getting sicker and sicker. I can’t explain what it was like—waiting every day for a phone call that never came. We take the boys to the bench we have in Jade’s memory for birthdays and anniversaries and we show them pictures.”
Jade’s sister went on:
“I will be the first to admit, before this tragedy, I also was almost ignorant to organ donation. Now I want to do everything in my power to prevent this from happening, so that no more families have to go through what our family has been through, and is still going through.”
It is not at all difficult to opt in. In fact, while preparing for my speech last night I decided that, in order to speak with any conviction and to be in an honest position to encourage the country to take the decision to donate, I at least needed to ensure that I had joined the register, so that is exactly what I did. But what dawned on me at that time, working late in my office here in Parliament and enjoying a mug of coffee and looking forward to getting back up to Cumbria to see my family and friends at the weekend, was how relatively relaxed I felt about making a decision that could only come into effect after my death. Online, I made a choice to donate all the bits of me that could ever be useful, and was rewarded for my choice by being informed that my decision could improve or save up to nine lives. I could instead have individually chosen my heart, lungs, kidney, liver, corneas, pancreas, tissue or small bowel, or any combination of them.
After I had registered, the website encouraged me to take three next steps to make clear my decision to my loved ones. It gave me advice on how to introduce the conversation, how to explain that my decision could improve or even save a life, and how to tell them why and how I had arrived at my decision. I have had this conversation many times at home; it is a popular topic around our kitchen table with my four daughters. Personally, I have a positive outlook on life and understand that the only certainty in life is death, but it is a much more difficult to have that conversation with my husband. We are all different. One thing is sure: if the worst had happened, and if my daughters and husband, or my mum and dad, had been forced to make that decision shortly after my sudden death, it would have been very difficult for them.
For me, last night, registering was a simple choice, made without any doubt in my mind, but it is important to note that of the 500,000 deaths each year in this country, only around 5,000 people die in circumstances, or from conditions, that mean their organs could be considered for transplantation. I am sure the Minister will agree that the Bill will significantly improve the chances of finding a suitable donor for the 6,100-plus people currently waiting for that phone call to tell them of a suitable donor who could improve or save their life. It is a tragedy that three people will die today because of the lack of a donor.
The Bill seeks to improve and save lives, but it also seeks to take out some of the decision making at a time when families are suffering the worst possible ordeal of losing a loved one. There are nearly 25 million people on the NHS organ donor register, and such high rates of voluntary donation should be applauded, but I realise that there will be people who, for a range of religious or other reasons, do not want to become full or even partial donors. That choice must be respected. I hope that the Minister can reassure the House that opting out will be possible under the Bill. We know that the numbers of registrations have significantly increased following public awareness campaigns—I hope that this afternoon’s debate will result in such an increase—but that is still not enough to prevent the unnecessary deaths of an average of three people each and every day. Thousands of lives are needlessly being lost, and in thinking of all those who continue to suffer and the inevitable devastation for their family and friends, and in the belief that the Bill will save and improve so many lives, I will be supporting it through its parliamentary stages. I hope that colleagues across the House will do the same.
It really is a pleasure to confirm the Government’s support for this important measure from the Dispatch Box today. I join other Members in sending my good wishes to the hon. Member for Coventry North West (Mr Robinson), who has been the driving force behind the Bill, and I am grateful to him for choosing this as the subject of his private Member’s Bill, because it will save lives. I also want to thank the hon. Member for Barnsley Central (Dan Jarvis), who actually began this journey for me with his Westminster Hall debate on the subject, which took place before we launched the campaign to take this Bill ahead. This has been quite a journey for us, and it has been a pleasure to work with him and the hon. Member for Coventry North West. They have made it very easy for me to work with them; we were all very focused on the outcome that we were trying to achieve, which was to save more lives, and we have approached the matter practically and pragmatically. I wish the Bill God speed to the other place, from where I hope it will emerge unscathed to take its place on the statute book very soon. I shall certainly be saying my prayers to ensure that it does so.
Lots of colleagues mentioned the debt that we owe to Trinity Mirror for a campaign that captured the public’s imagination, and we are grateful to Max and his family for their role in it. However, we cannot thank the family of Keira Ball enough, and my hon. Friend the Member for North Devon (Peter Heaton-Jones) has been fantastic at telling their story. One of the joys of doing this job—I always feel inadequate and utterly humbled—is meeting donor families. It is great to have the hon. Member for Birmingham, Perry Barr (Mr Mahmood) here, because we should not forget live donors and their altruism. It is incredible that people will make such donations voluntarily and, it must be said, at great personal risk. Giving the gift of life is something that donors and their families should be proud of, and I never fail to be inspired by those stories. We think today not only of those who benefit from organ transplants and those on the waiting list—we hope to be able to save more of them—but of donors and their families, without whom we would not be having this debate. I thank them all.
The real objective of this Bill is to ensure that we improve the chances of the thousands of people who are desperately waiting for a transplant. Again, I totally associate myself with the comments of the hon. Member for Barnsley Central when he introduced the Bill, because it will not achieve the degree of change that we want on its own, but one of the happy advantages of this Bill and of the Daily Mirror’s campaign is that we have raised awareness of organ donation. Such things were rare 40 years ago, but donation has almost become so commonplace that people may think, “That is somebody else’s problem. I don’t need to worry about registering my preference. Somebody else will do it. There isn’t the need.” Well, there is a huge need. We also need to remind people that dialysis is a life-saving process, but it is not nice. We have become desensitised to just how challenging such illnesses are.
The Bill provides us with a fantastic opportunity to raise awareness of the whole organ donation issue, which I have been pushing NHSBT to take full advantage of, and I am pleased to say that it has. We will obviously have to build on that progress as the Bill moves forward. My hon. Friend the Member for North Devon pressed me on that, and if the hon. Member for Coventry North West was here, he would have done the same. I can tell the House that we will be investing £18 million over the next three years to raise awareness of the new scheme and to encourage people to register their wishes and have conversations with their families, which is by far the most important thing. There will be £18 million over the first three years, but ongoing communication to raise awareness will very much be part of how we take things forward.
If Members and anyone watching today have not had that conversation with loved ones about their wishes in the event of their death, please have it. The last thing we want is for loved ones, in the unhappy event of a loss of a life, to be put into a position where they have to make a judgment not knowing the true wishes. We have heard how people have approached that and doing so is immensely brave. I sometimes hear from donor families that the decision was easy because they had had that conversation, and I cannot repeat that message often enough.
I associate myself with the comments of the hon. Member for Barnsley Central when he said that the Bill is not about the state taking control of people’s organs. Organ donation is a gift, and that is a fundamental principle of the Bill. We are altering the basis on which people’s wishes can be expressed, which will have the effect of altering the conversation at the bedside when it most needs to take place. However, we will continue to invest in the specialist nurses who are trained to have those conversations in the most sensitive way. It is important that they are specialists, because the surgeons and medical staff who are emotionally invested in trying hard to save a life should not be the ones who then must have that conversation with the family—that clearly would not work.
I totally endorse the argument that, in addition to the new system, the accompanying measures relating to all support staff and communication will contribute to an increase in the number of organs available for transplant. It is only by taking those measures together, rather than in isolation, that the scheme will be successful.
In the time remaining, I want to address some issues that have arisen. There is a lot of nervousness. People are inhibited from signing up to organ donation mostly by a sense of mistrust—of institutions of the state and of medical professionals—and because they do not really know what happens. I want to put some points on the record to calm the situation and provide reassurance.
We have talked extensively about the need for more donors from black and Asian communities because they are more likely to suffer from conditions that require a transplant. Obviously, the most successful transplants are those with a strong genetic match, so we need more of those donors.
We know that the issue is taboo in some communities. Some people believe that there are reasons of faith for not supporting transplantation. We have been working with various faith leaders to develop messages and materials to reassure people that the practice is consistent with their beliefs. I am grateful to my hon. Friend the Member for Torbay (Kevin Foster) for mentioning that the Board of Deputies of British Jews supports the Bill. We have had similar conversations with representatives of the Hindu faith, the Sikh faith and the Muslim faith, as well as with Christian churches.
That dialogue needs to continue. It is clear that people will respond to messages from people whom they trust and respect, so it is very important that we continue to engage with faith communities. It cannot all be done at once; we need to keep chipping away and sending messages. I hope Members will use the toolkits I have circulated today. They are designed to equip Members of Parliament, who are trusted in their communities and are good advocates for the proposal, with the material to engage directly with communities.
Much reference has been made to the role of families at the bedside. There is concern that families often overrule the wishes of people who want to donate, but we need to protect the family’s ability to have that final consent. It is very easy for us to imagine situations in which we would want our wishes to be respected, but we do not know the circumstances when it comes to matters of life and death. It is very important that families have that final consent, and I emphasise that that will remain the case. I cannot emphasise enough that if people have that conversation with loved ones, their wishes are less likely to be overruled.
I remind the House that guidance on the current system of consent is detailed in a series of codes owned by the Human Tissue Authority. We will update those codes and people will have the opportunity to make representations. The idea is to have a complete, up-to-date document providing information on the approach taken in England. The guidance will cover how consent can be expressed; how people can register their wish to opt out; the role of the organ donor; and how specialist nurses will interact with families. It will also give people the opportunity to record that their faith is important, if they wish that to be an issue of consideration.
It is also worth noting that as we develop technological solutions to addressing things in the NHS, people will be able to amend their views on donation regularly by direct interface with an app. They will be able to change their mind. One day they might decide that they are happy to give their corneas and then on another decide that they are not. People will be able to make that selection and make anything that they would wish to be considered clear.
On timing, we hope that the Bill will receive Royal Assent by March, in which case the HTA is all set to go to produce a first draft of the code by May. That will be followed by a 12-week consultation on the draft guidance with stakeholders, including faith groups, so there will be another opportunity for us to address any concerns properly at that time. We expect to lay that guidance before Parliament next September. I can therefore assure the House that we intend to make use of this Bill speedily once it has received Royal Assent.
I wish to make a point about children. Obviously, children below the age of 18 will be exempt from the Bill, as they are not at the age of majority in order to make their choices known. As before, the family will be fully consulted. The safeguard will be as it is now, and children are always dealt with extremely sensitively.
I have mentioned that we will continue to engage with faith groups. I wish to emphasise that NHSBT is updating and extending its faith training, so that as we can expect more conversations to be taking place on the part of specialist nurses following this change, people will be kept fully up to date with any religious and cultural issues that might need to be considered.
Finally, I wish to say something about an issue that Members may have been lobbied about: novel transplants. We have all talked a lot today about kidney, liver, heart and lung transplants, and these are the organs we are all used to talking about. Clearly, medical advances being what they are, other things will materialise; I have heard evidence of hand, face and uterine transplants. They will not be covered by the Bill. They will be exempted by our introducing regulations that exempt certain organs from the deemed consent procedure. We have done it that way because this Bill needs to be able to have a life and to respond to medical advances, so it is better to have regulations that enable us to exclude rather than to have a list of organs that are covered. In that way, it is easier to keep this law in date.
Does my hon. Friend know whether the proposals she has set out on protecting parts of the body such as hands and the other things she mentioned will be marrying up with legislation going through the devolved legislatures now? Will we therefore have a similar code of practice across the entire UK?
Just as this Bill has progressed with good will from those in all parts of this House, so it has progressed with good will from all nations. We have all been sharing our experience to make sure that we get this right. So I am sure that that will be taking place in a consistent way.
In conclusion, as I said at the beginning, I am so proud that I have been able to play my part in taking this Bill forward. I am so grateful for the good will from both sides of the House in taking this forward. It has been a fantastic piece of cross-party working. It has made the process quick and speedy, and we have all been focused on what we are trying to achieve, which is to save more lives. I am very confident that Max and Keira’s law will have a very positive impact on how we treat people with organ failure and that it will also kick-start a cultural change in how we address these issues. In fact, it already has: people are talking about organ donation much more and joining the organ donor register at increased rates. I hope that the House will give the Bill its wholehearted endorsement.
With the leave of the House, and on behalf of my hon. Friend the Member for Coventry North West (Mr Robinson) as well as myself, I thank all Members who have contributed to and supported this important debate. We have seen the House at its very best with Members from right across the political spectrum working together to deliver meaningful, real change on behalf of their constituents. I take this opportunity to extend formally my thanks to my Front-Bench colleagues for their support, to the Minister, of course, to the Government, and to all the officials who have made this possible.
The Bill is a welcome measure that will make a huge difference to thousands of people right around our country. Max and Keira’s law will save lives and give hope to many. I look forward to the Bill receiving Royal Assent at the earliest available opportunity. As many Members have said, this is only part of the process by which we increase awareness and encourage the most important conversations around organ donation. I thank all Members who contributed to the debate and supported the Bill’s safe passage through the House. It is much appreciated.
Question put and agreed to.
Bill accordingly read the Third time and passed.