It is a great pleasure to see the Minister in her place. I was very pleased that yesterday afternoon she put out an official statement of support from the Government. They will be supporting the Bill, not just on Second Reading but through all its stages. That is very welcome and I appreciate that very much.
I am also very pleased with the support—I had no doubts at any stage—of the shadow Minister who will be speaking from the Opposition Front Bench. I must also mention that early on the Prime Minister indicated to me she had a personal interest and lent the Bill her personal support. I would like to say a sincere thank you to the Prime Minister for that. Rounding off this stage of my thanks, I have to mention the Leader of the Opposition. His leadership and support, and that of his office, has been invaluable. I have seldom seen such unanimous support across the House, with the 11 Members who have sponsored the Bill representing seven political parties in this House. Carrying that unanimity and commitment to the country and reaching a consensus there would mean that the Bill can become a very effective Act.
I pay tribute to my hon. Friend for using this opportunity to bring the Bill to the House. I hope that the House gives its endorsement to the Bill today. I note that the Government have welcomed the Bill. I assure him that if the Government work with him to ensure its speedy passage, they will have the Opposition’s full support.
I am grateful for that and thank my hon. Friend very much indeed. His support throughout has been consistent, welcome and a great help. I am pleased to tell the House we also have the support of three previous Prime Ministers. Only Sir John Major felt that he could not support us. He said he did not know enough about it, which was sometimes his problem as Prime Minister.
As I was saying, we should try to carry the unity of the House on this issue to the country and raise public awareness about the need for the opt-out solution we are proposing. That would be a major achievement. The Government have launched a consultation on the matter. My hon. Friend Dan Jarvis, who was with me in the early meetings, urged that course upon the Government. They responded quickly and to great effect: the response has been unprecedented. I am informed, unofficially, that the number of individual responses—separate, individually written letters—is now over 11,000, which is a record for any public consultation of this kind. The consultation does not finish until
The predominantly positive response that we have been led to understand the public consultation is producing is hardly surprising—it is very welcome, but hardly surprising. According to recent reliable polling from the British Heart Foundation, up to 90% of the public said they were in favour of donation in principle, but that only 36% get around to signing the register. I think that many people are guilty, as I was for a number of years, of finding themselves in that position. That in itself suggests how effective an opt-out register could be.
Why are we actively looking towards implementing an opt-out solution at this stage? In England, for example, the situation is disappointing. We have some of the lowest rates of consent for organ donation in western Europe. Low family rates of consent have been one of the major barriers to the donor rate increasing. In effect, that prevents one third of available organs from being used. They go straight to the grave or to the crematorium. None of us likes to think about the worst happening, and it is challenging to have conversations with family and loved ones about one’s wishes after death. However, one of the Bill’s principle aims must be to encourage open discussions among families, so that an individual’s real wishes are known to their nearest and dearest. I think it reasonable to say that in the majority of cases, given the outcome of the consultation and what we know from the polls, people would wish to donate their organs after their death.
However, there will be those who take a different view. Perhaps even one or two in the Chamber feel that way and will make their feelings known in the debate. In no way do I wish them to feel that they have been railroaded into decisions that they do not wish to take. Therefore, I emphasise to those who feel that they cannot lend their support or have doubts about the Bill at this stage that soft opt-out provisions will be built into it. Naturally, I imagine that there will be a fair amount of discussion about those in Committee. I assure hon. Members that, as the Bill’s promoter, I give them my fullest personal commitment to approach discussions about the opt-outs in the spirit of sympathetic open-mindedness.
I am here to support the hon. Gentleman’s Bill, but I ask him to engage with the Jewish community to see whether he can allay their concerns about how it might affect observance with their religious teachings.
I am very pleased to have taken that intervention. I remember that one of the former Prime Ministers who supports us—Gordon Brown—wanted to introduce an opt-out system, but came up against a fairly immovable block in the then Chief Rabbi, Rabbi Sacks, who said then that at no cost could he commit the Jewish community to supporting it. That rather held matters up and the Government were then overtaken by other matters with that Bill, but yes, we will do that. I have been in touch, and we believe that the council itself has made an official statement supporting the Bill.
I congratulate my hon. Friend on his Bill, and I know that he has put in a lot of hard work into securing it. As any Member who has dealt with a Bill in the House of Commons knows, a lot of effort goes on behind the scenes. He has given important assurances on an opt-out, particularly to communities such as the Jewish community, and it is important to convey that message across. I hope we will get further support on that basis.
I am grateful to my hon. Friend and my honourable colleague from our shared city—we are both immigrants to it, but we hold it very dear to our heart—and his support along those lines is most welcome. I notice that my right hon. Friend the Leader of the Opposition has come in. I repeat my warm tribute to his leadership on the issue and to the tremendous help that I have received from his office in backing up the Bill. I am deeply grateful. I also took the opportunity to express a sincere thank you to the Prime Minister, who has taken a personal interest and lent her support. I know that he will welcome that, too.
I apologise for having just arrived, Mr Speaker. I thank my hon. Friend for what he said. It is wonderful that he has got this Bill introduced, and I hope that today the House can pass it and thus save an awful lot of people’s lives in future.
That is indeed our aim. However, I shall sound certain notes of caution about what we need to do to ensure that we get and successfully utilise that increase in organ donation. We have to watch out for certain things, and I will mention those as part of the serious approach that my right hon. Friend would expect from me and that, in due course, he would want to see his Government adopt and perhaps have to implement. I hope that that is the case, too.
We have a proud history of innovation in the field of transplantation. I think that time prevents me from going into any detail on that—indeed, I am getting the message from you, Mr Speaker, that time is of no essence, so let me mention a few things that have been achieved. In our proud history, Britain’s first living donor transplant took place on
I thank my hon. Friend for introducing this Bill. I think that he will move on to the point that transplant surgery is now becoming routine and people are living normal, long lives as a result. When I was growing up, a heart transplant was the No. 1 item on the news, and now they are being carried out every day.
Indeed, and the consequence is that to some extent we are victims of our success. We now have a growing need for organs and a growing waiting list for them, as I will mention. That problem must concern us all, and as a country, we must find a proper resolution.
I congratulate my hon. Friend on his campaign. There are 90,000 residents in Doncaster who are on the organ donation register, and I am proud to be one of them. However, 54 patients in Doncaster are waiting for transplants. Unfortunately, Andrew Lake, the brother of my constituent, Amie Knott, died waiting for a double lung transplant. Is it not the case that we need to secure more people who are prepared to be part of this service, so that we can save more lives?
The whole House will be touched by the constituency case that my right hon. Friend raises, and it will wholly agree with what she says about the need to increase the availability of organs. We believe in an opt-out system that everybody is part of unless they choose to opt out. I have made it clear that the opt-out procedure would be simple and that we would respect those who choose to do so. If we can get the Bill through, it will not make an immediate difference tomorrow, but I am sure that over a period of years, as the activity rates and our capacity to handle donations successfully increase, the availability of organs donated will also increase. That is why I am so keen to get the Bill through Second Reading today.
Since those early successes, some 50,000 people in the UK have been given a second chance and a new lease of life, thanks to organ donation. I am sure that the whole House will join me in expressing the gratitude that we all feel to the NHS for that. Even if our history is a proud one, we cannot rest on our laurels. Unaccountably, over the past few years, the steady increase in the rate for donation and transplantation has slowed. In the past four years, to be more precise, it has in effect plateaued in England.
Against that background, there has been growing concern about the fact that a certain amount of inertia is setting in. The most recent figures for the whole United Kingdom make disquieting reading. As of March 2017, 6,388 patients were registered on the active waiting list for a transplant; in the same year, 457 died while on the active waiting list. Perhaps more significantly, over the same period, 857 people died after being removed from the active waiting list because while on it they had become too ill to receive a transplant. That shows how severe the situation is.
I congratulate my hon. Friend on the Bill, which I support. Many of my constituents have contacted me about children who have died for want of a suitable organ donor. I wonder whether my hon. Friend will explain at some point how the Bill will benefit children who need an organ donor.
I think that that is one of the most moving aspects. We held a reception last night. Many of those present had benefited from organ donations, but in a number of cases it was their children who had benefited. I will indeed say more about that shortly.
My hon. Friend is making an excellent speech, and I am, of course, here to support him. The sad reality is, however, that behind every organ donation is someone who has died. It is right and proper for there to be facilities for children to receive donated organs, but that means a very sensitive time for the donor’s parents, who have lost a child of their own. How might it be possible to deal sensitively with those families whose children have died?
We would encourage that across the board. Although my hon. Friend draws attention to a vital area, it is only of those that we hope to address. As I am sure he will understand, different issues seem equally important to those who are in other categories. I do not claim that my Bill on its own is a panacea for our problems, but I am convinced that it is a vital prerequisite to the imparting of a new impetus to the increase in organ donations that we know the country urgently needs.
I congratulate the hon. Gentleman on the Bill, which I support. May I pursue the point made by Tony Lloyd? I believe that in 2016-17, after Wales had introduced presumed consent, 13 out of 33 families withdrew that consent when they were asked about it. Can the hon. Gentleman assure me that the Bill will allow room for relatives still to be consulted and to withdraw the consent? After all, it is being asked for at a very sensitive time. I want us to ensure that families are given that latitude, while trying to do everything possible to increase organ donation.
The right hon. Lady raises a difficult but important issue. As part of the soft opt-out, there will certainly be arrangements for families and close friends to express their opinions. It is interesting to note that in Spain, which has no register and operates what is effectively an opt-out system, there is always consultation with every family who can be reached in time in the absence of a register, and as a result of those consultations there is a tremendous rate of consent. It can, of course, work the other way as well, and the Bill will make full provision for that. It needs to be carefully worded, and I invite those with a particular interest to look at it, but the intention is to give families in that position an effective veto. I may not have fully picked up the point made by my hon. Friend Tony Lloyd.
I, too, congratulate the hon. Gentleman on the Bill, which I support. Does he agree that the point about Spain highlights the fact that the Bill is not actually the answer, but only part of the solution? After its Bill was passed, Spain took 10 years to increase the rate of donation by investing heavily in transport and infrastructure and a national organ donation system.
Yes. I shall refer to some of the circumferential investment that will be necessary to ensure that our own system is successful. Of course we would be starting from a much higher level, because our infrastructure—the nursing provision that is so vital, the body of professional surgeons and the specialist units—is much greater than it was in Spain. However, we recognise the success of the Spanish system. At its heart is the ability to reach the families and talk to them. That should happen in any event, but we believe that when it happens against the backdrop of an opt-out system, it starts from a different position and is—we hope—likely to produce a more positive result.
I think it fair to say that most, if not all, Members who are present today are here because we support the Bill and want to see it on the statute book. But—and it is a “but”—the hon. Gentleman said in his response to the point made by my right hon. Friend Dame Cheryl Gillan that friends and family would be consulted. I think it important for the Bill to be very precise if the matter is not to be brought into dispute and if a wave of withdrawals is not to be generated, which is the last thing that we want. Will the hon. Gentleman ensure that that issue is very clearly addressed when the Bill goes into Committee, as we hope that it will?
I am grateful for the hon. Gentleman’s thoughtful and apposite intervention, and I can give him that assurance. Obviously, as the Bill’s promoter, I shall take a personal interest in ensuring that the right balance is struck. We should bear in mind that the balance will be struck in a context in which opting out is the law of land, which I think changes the starting point of the discussions with families, but those discussions should nevertheless be handled with proper caution and respect in view of the moments of agony and the awful decision making with which families are faced.
I am here to support the Bill, but, as a Wales Member, I want to provide some reassurance. Wales already has legislation that has been working and that deals specifically with that point, and we have a higher donation rate than any other nation in the UK. I welcome the Bill, and I hope that everyone present will support it today.
I am very grateful for that intervention, in every sense. I was going to come on to the situation in Wales, which has been unfairly and prematurely judged to be a failure—even by as eminent an authority as the Nuffield Council on Bioethics, which yesterday opined on the basis of figures produced only one year into the scheme. However, the latest serious peer-reviewed article in The BMJ expresses a different opinion, some three or four years into the scheme. It was written in February this year, so it is up to date, and there have been a few years in which to observe the trends. According to the author, a respected journalist, Wales has more registered donors and has experienced fewer family refusals and more living donations than any other part of the UK since the introduction of an opt-out system. The article concludes that
“none of the concerns about deemed consent”
—concerns rightly expressed by Members this morning—
The signs from Wales are very good, but these are early days, and I think it behoves us to note the caution expressed by then Nuffield Council on Bioethics. We want to proceed carefully and with all the necessary infrastructure in place. One of the great aspects of our present system is that it is trusted by the public, and we cannot and will not put that trust at risk. We must ensure that the new system is introduced properly. What I have seen at first hand of NHS Blood and Transplant suggests that it is a very well organised outfit.
We do have a functioning register; we do know what we are doing; and we are building up our essential counselling nursing capability. As we build it up, some limited investments will also be needed in facilities, for any growth in demand will lead to a growth in the requirement for facilities. I say to the Minister, who is looking rather grim at the moment—[Interruption.] That’s better. I say to her that the NHS is very much in favour of this; I will quote a figure in a moment. Its thoughts as to the extent to which we can benefit in terms of increased numbers of organs and saved lives are encouraging, but it adds that its requirements for additional resources must be met. All I can say to hon. Members in that respect is that the amount of money required—the small requirement of resources in terms of software, mainly for the training of the nurses, and hardware and some facilities—is minuscule in relation to the good it can do. I think of the sheer joy we can see in those, particularly the children, who have had the benefit of a transplant.
The hon. Gentleman glossed over Wales in his remarks, but Welsh Assembly Government research showed that the introduction of the opt-out has had no impact on the number of organ donors in Wales, while the organisation CARE has said it has led to a reduction, not an increase, in the number of donors. What learning has the hon. Gentleman taken from the experience in Wales, and what measures are there in his Bill to address some of the flaws there might have been in that system in Wales?
That is a very moderate intervention from the hon. Gentleman, for which I am grateful. He is probably looking at the recent remarks and quotes from the Nuffield Council on Bioethics, which relate back a year, if I am not mistaken, to 2016 or ’17, but we are now in 2018 and the situation has evolved. I recommend to him an article I have here in the BMJ; I will leave it out for him if he would like to read it. It gives a full account of the situation in Wales, and is very hopeful. But, as I have said, we are going to monitor this carefully, and we should be cautious, practical and realistic in our approach to the introduction of the system in the UK.
May I give the hon. Gentleman some good news on Wales? The legislation in Wales was pioneering, and was much discussed when I was Secretary of State for Wales. I have been looking at the details of some of the statistics from Wales in the latest report on organ donation and transplantation activity data, and the hon. Gentleman will be pleased to note that back in 2013-14 some 1,005,213 people were opted into the organ donation register in Wales, while for the first three quarters of the years 2017-18 that number increased to 1,220,331. The fact that more people are opted into that register is very positive news from Wales.
It was because the figure was so low in 2013 that the Welsh Government decided to move to an opt-out system. I agree with the right hon. Lady, and disagree with those who, for some reason or another, will not look at the most recent facts and move with the situation that is developing. The situation in 2013 was bad, which the Welsh Government recognised and then went for an opt-out system. Then there was a period of bedding-in and there appeared to be no change, but the most recent figures for 2018—as opposed to 2017 or ’16—are showing a marked improvement, and I am sure we can all rejoice at that. This is not a matter of trading economic figures across the Chamber; that is a sheer fact and one that I think we can all take great satisfaction from.
My interest in this matter arose from a constituent—a young man—who came here and lobbied. A year later I attended his funeral because, sadly, he did not get the transplant he wanted, but he had suffered enormously in the preceding period. We have now had the opt-out in Wales, however, and, regardless of what people can do with the statistics, the fact is that people in Wales are still alive who would have died before the law was passed, and people are dying unnecessarily in England.
I am grateful to my hon. Friend. It was his Bill that sparked my personal interest, and I pay great tribute to the work he did in preparing that Bill, which we have adopted almost in its entirety. He will be pleased to know that we are hopeful that his Bill—from the beginning, as it were—will now find its way alongside my own on to the statute book; I know that will give him great pleasure. What he says about that individual case is certainly true. The positive news from a cautious assessment from the NHS is that, provided the opt-out system—the quintessential starting point for all these forward projections—is introduced and backed up with the necessary limited revenue and capital spending, up to 500 lives a year could be saved by deemed consent.
I am delighted to appear as one of the supporters of the hon. Gentleman’s Bill, and am very pleased to have my name on it. I hope he will be able to look at just one thing in Committee: the issue of deemed consent involving people who lose capacity towards the end of their lives. I hope there will be more clarity in Committee to enable people who have made the decision that they want to make their organs available to do so, when just their brain is no longer of much use to anybody else and they do not have the capacity. I hope the Bill will be clear about such circumstances when people lose capacity towards the end of their lives but when the rest of the body can still be of use to others.
I thank the hon. Gentleman for his intervention and the fact that he agreed to be a supporter of the Bill—his name appears on the face of the Bill, he will be pleased to note. He raises an area of great concern, but it is something we will have to deal with in Committee; I am sure he will agree that it is not for Second Reading, so I will not go further into it now.
I thank my hon. Friend for bringing this Bill to the House, and I will of course support it. He mentions the modest investment in capital and resources needed to give effect to this when it has become law, but does he agree that by saving lives and making people healthy enough to play a full part in society, we will be increasing the ability of our country to succeed, and also—although this is obviously a secondary issue by comparison with the saving of life—we will be reducing the ridiculous amount of spend on just keeping people alive when they actually need organ donations?
I entirely agree with my hon. Friend and thank him for his intervention, but I would rather not go down the route of cost-benefit analysis; these are matters of life and death and are best left as such when we look at what we can do to save lives that we know can be saved.
I strongly support my hon. Friend’s Bill. Alongside this measure and a number of the other things he describes, does he agree that the most important thing we can do is have that conversation with our families and loved ones, to make it absolutely clear to them that when we are gone we wish whatever bits of us are still of any use to be given to others so they might continue to live? Is that not what we really need to do to make sure that, when that difficult conversation comes to be had over a loved one who has died on a hospital bed, as many people as possible know and the family can say, “Of course”?
I entirely agree with my right hon. Friend. I do not know whether he was in the Chamber when I remarked on the importance of family conversations, which are absolutely vital, and also the importance of public awareness. The Government consultation has contributed enormously to public awareness. We must ourselves now set the example in terms of being registered and not opt out—I certainly have no intention of even considering that.
The other great contribution that we can make in personal terms is to hold those conversations with our own families and encourage others to do so. Public awareness will not necessarily lead to that happening, yet we know that it is at that moment when families are confronted with the awful situation that they often back off, sometimes even overriding the wishes of the deceased who happens to be a registered donor. We can do no more important work than to hold those difficult family conversations and encourage others to do so.
My hon. Friend is making a good point about making people aware of the difference this can make. Yesterday, I found out about the British transplant games, which involve live donors and people who have received an organ transplant. This wonderful event will take place in Birmingham on
I feel inclined to say that I rest my case, but I cannot quite do that just yet. I think I am okay for time, despite all the interventions. I will, however, proceed to a conclusion now, if I may.
I have quoted some disquieting statistics, including the 500 saveable lives—or avoidable deaths because of the unavailability of an organ—a year. To put it another way, if we continue with unchanged policies, some 500 of the 6,500 people on the present waiting list will, in effect, be on a life sentence and will die in the next year if no organ becomes available. I believe that the House will agree that that is simply not good enough. We can do better as a nation. We have shown that we can do that through the creation of the NHS, which is something that no other nation achieved. Here again, we can be pioneers in making transplantation more successful, principally through an increase in organ donation.
As I have said, I do not think that my Bill is the answer to all the questions—we have discussed many of the points that need addressing in the course of this debate—but my God, I am convinced that it is a necessary start if we are to regain the momentum and the impetus that we lost by moving to an opt-out system. After all, that is why this measure has been introduced in Wales, and that is why I am putting my proposal to the House today.
My hon. Friend Emma Hardy talked about the British transplant games. Last night’s reception, given by the Daily Mirror—very fortunately—in the Terrace Room, was very moving. I met Max’s mom, as she has come to be known—Mrs Emma Johnson—and she gave us the most up-to-date news on Max, who has become something of the face of the campaign. I make no excuse for being emotional about this, and I am sure that everyone will be delighted to know that Max is still doing well. He went back to school part time last September, and it is hoped that next year he will be back full time. Peter Heaton-Jones represents the donor family—the Ball family, whose daughter, Keira, was killed in a terrible car crash; a most unfortunate incident—and he brought to my attention something about the Max story that I did not know. Keira gave her heart to give that young boy his life, and Max’s mom, Mrs Johnson, has said how much she is looking forward to meeting the family. She says she wonders how they will feel when they put their hand on Max’s heart and feel their daughter’s heart still beating. I had a call alerting me to the fact that the hon. Gentleman wanted to take part in the debate and to refer to this, and I said that that would be great. I am sure that he will catch your eye in due course, Mr Speaker.
There are many in this House who have been affected in one way or another. If I may, I would like to mention my hon. Friend Julie Elliott, who was also at the reception last night. Her daughter, who unfortunately could not attend, has been on daily dialysis for 12 months now while waiting for a kidney. I know that my hon. Friend will also want to catch your eye if possible, Mr Speaker.
I hope that the party opposite will take it in the best spirit when I say that I would like to thank the Daily Mirror for its magnificent campaign on this issue. It shows just what a free press, fighting courageously, can achieve for a brave cause. It is, in that sense, the best of the best. I said that to their representatives very openly last night in thanking them for the campaign, and I know that they feel that they have achieved something—perhaps more than some newspapers achieve in 24 pages of exposure. The representative of the Daily Mirror told me that my thanks were welcome, but they were nothing compared with the happiness felt at the Mirror every time there was a successful transplant as a result of the campaign, especially among the young.
I have had many letters on this subject, although it is properly not appropriate for me to read from them now, as I was intending to. I shall just say that the House has an opportunity today that, while not unique, might not occur again for several years. We have the opportunity to introduce a Bill whose enactment we could achieve by the end of this year, if it receives its Second Reading today, and whose effect could begin to be felt in the following year. I believe that the House is in the mood to rise to the occasion, and I am sure that we will seize this opportunity to pass a Bill that will come to be regarded as an Act for life.
Thank you very much for calling me to speak so early in the debate, Mr Speaker. I add my congratulations to Mr Robinson on the compassionate way in which he introduced his Bill, and on bringing it before the House. I hope that I am not assuming too much when I say that I think there is good support for it on both sides of the House. More importantly, I believe that the Under-Secretary of State for Health, my hon. Friend Jackie Doyle-Price, who will be speaking from the Front Bench today, will also be giving it her support. For me, this is a bit like déjà vu, because I went through all these arguments back in 2010 when the Welsh Assembly was looking at introducing what finally became the Human Transplantation (Wales) Act 2013, which took effect in 2015.
The permitting of a system involving deemed consent is quite a complex concept. To be truthful, it received many objections from a large number of people in Wales at the time, on a large number of grounds. I was approached by the Kidney Wales Federation, which did a fantastic job, along with a lot of other organisations, in lobbying politicians and explaining the position of families who were waiting for organs and families who had been approached to donate the organs of a deceased relative. The debate got quite heated at times, and it also gave rise to a lot of myths. Looking at the evidence, I have always found that the medical profession and others surrounding bereaved relatives, or those who are about to become bereaved, have handled these matters with great sensitivity and achieved good outcomes. Indeed, the legislation in Wales still permits families to withdraw the so-called deemed consent, which means that their views can be taken into consideration. That is extremely important.
One thing I looked at was the success rate of the 2008 organ donation taskforce, which helped to increase donation rates greatly in the five years of its operation. There was a 50% in increase in donors and a 30.5% increase in transplants, which are impressive statistics. At the time, I was exceedingly worried that, by introducing controversial legislation, we might do damage to a campaign that was yielding positive results—that needs to be taken into consideration.
The truth is that there are more people on the donation list than there are organs available. For many people in this Chamber, and beyond, it is worth noting that there was a particular problem in the black and minority ethnic population because, in those days, 23% of the people waiting for organ donation were from the BME population and only 1.2% of the people on the register were from the BME community. That huge discrepancy and disparity caused a lot of aggravation.
I was unsure about the legislation in Wales, but I am pleased to stand here as a politician and openly admit that I have changed my mind. There is no disgrace in that—when the facts change, I change my mind, which is important. One reason why I changed my mind is that I have a dear friend who, for the purpose of this debate, I will call Jane. I have known her son since he was born, and I will call him John.
John has primary sclerosing cholangitis, a chronic liver disease whereby the bile ducts, the passages that carry bile from the liver to the intestines, become blocked and narrowed by inflammation, so scar tissue builds up and the liver itself stops functioning. The symptoms can include tiredness, aching, itching, pain in the abdomen, jaundice, chills and fevers. The progression of the disease, although highly variable, usually leads to one conclusion—that the patient needs a liver transplant.
John has been told that, because of the shortage of transplants, he has to be in cirrhosis before he can be put on the list, and then he will have to wait for a match. By that time, he may not be well enough to have a transplant. I am close to the family and have seen the effect on them. Jane wrote to me:
“This has obviously affected the whole family. John still lives with us at 25, and we are, in fact, his carers in some respects, as we know he will only get worse in time. We do not know how much time he has, and he cannot plan for his future. As well as physically, mentally it takes a great toll on him, as he does not know if he will get a transplant when he needs one. Organ donation would help a great deal in this.”
When you have a friend with a boy—he is now a man, and he is a highly intelligent and wonderful human being—in that position, you have to reconsider where you stand on such legislation.
The Bill will not be enough in itself, but it will do absolutely no harm and it will again stimulate a debate. If the Bill continues to be accompanied by campaigns to encourage people to register and to donate, it will help to raise awareness, which will help to increase the statistics, as we did in the first five years following the organ donation taskforce.
We are all living longer, and if we in this House can prolong the life, and improve the quality of life, of people such as John who suffer from rare diseases, we should do so. I will give this Bill a fair wind. Obviously the devil will be in the detail, and we will need to consider the Bill carefully. I would like us to consult, and to learn from the experience in Wales, because there will be a lot to learn—Wales has forged the way.
I do not want a hard system, as in Austria—that is not what I envisage. I want this whole area still to be surrounded by the care and consideration of the medical profession, and I want the latitude that allows families and people with genuine reasons not to participate, but I want to see increased numbers of people on the register. I want to see increased organ donation and more lives saved. I give the Bill a fair wind.
I congratulate my hon. Friend Mr Robinson on his success in the private Members’ Bills ballot, which is no mean achievement, and on choosing this most important topic. I have always supported an opt-out system, as opposed to an opt-in system. What I will talk about today has not resulted in my decision that an opt-out system is right, but it has amplified the importance of my decision.
I pay tribute to my hon. Friend Dan Jarvis, who has done so much good campaigning on this issue. I also pay tribute to the Daily Mirror, which has already been mentioned, for its campaign, and to the Prime Minister and the Government for their statement this week in support of the campaign—that is very important.
Today I will talk about my family’s story. I rarely talk about my family in public, because it is me, not them, who entered public life. There is nothing special or unusual about my family, and what has happened to us over the past 18 months could happen to anyone. Young or old, rich or poor, there is no differentiation when such things happen, and they highlight the reality of the need to change the law to deemed consent.
I have four grown-up children, all now either married or with long-term partners, and five wonderful grandchildren. We are a very close family, and I am lucky that we all live within two miles of each other in Sunderland—when I am not down here. My eldest daughter, Rebecca, is now 36. She is married and has a six-year-old daughter, and she was referred to the renal unit of the Freeman Hospital in Newcastle after routine blood tests showed a problem with her kidney function. That was in October 2016, so not that long ago.
After Rebecca spent a week or so in hospital, it became clear that she was quite ill with significantly reduced kidney function that could at some point lead to her needing a transplant. That was where we thought we were, which was a big enough shock in itself, but the medical team at the Freeman thought that they could stabilise her condition.
Rebecca had been reasonably okay until that point. She had had a few issues health-wise, but she was okay, so the diagnosis of chronic kidney disease came as a huge shock to her, to me and to our family and friends. To face the reality of the fragility of life is very hard at any time, but facing it for one of my children, although she is an adult, is one of the hardest things I have ever had to do.
My daughter had until recently been a healthy, happy young woman. She was quite a serious runner in her spare time, and she regularly ran half-marathons and, occasionally, marathons. In fact, in the weeks before she took ill in October 2016, she had gained a place at the 2017 London marathon—she did not run it, obviously. It is impossible to describe the shock of someone like that suddenly becoming so ill. I have to say that she did not get her fitness drive from her mother, who goes to watch her run but does not run herself.
Sadly, Rebecca’s condition deteriorated very quickly, and in June 2017 she had surgery to enable her to start dialysis. One of the few positive parts of the general election campaign for me was that I was at home for six weeks, so during the time when her health was deteriorating rapidly I was able to drop everything and get to the hospital quickly. It is a lot harder to do that when I am 300 miles away.
Rebecca started dialysis last July, and I want to talk a little about the daily reality of her life. In the two or three months leading up to her having surgery she became increasingly unwell, to a point where, daily during those last few weeks, she was just lying on the sofa after she got up and she was not eating particularly well, if at all. She had the odd slice of toast or bowl of cereal. One thing that happens when people have kidney failure is that they feel very sick and generally unwell, with no energy. She could not really walk to the end of the street and she certainly could not take part in all the things that her daughter did on a day-to-day basis.
When dialysis was first mentioned to us, it was a terrifying prospect, but its arrival has given Rebecca a quality of life again. She does PD—peritoneal dialysis. She has a machine at home and links on to it every night, and for eight hours her body dialyses on it. That means that she has got some quality of life back. She is back at work, but she does have restrictions. She has to have a restricted diet, which for her means no coffee, chocolate or cheese—three things she loves. She gets two of those from her mother, but I am a tea drinker, not a coffee drinker. She is here and she is alive. Whenever she has a bad day—she does have bad days emotionally, because this is a difficult thing to be dealing with—and she says, “I am sick of this dialysis”, I say, “Just think: what’s the alternative, Rebecca?” That quickly focuses the mind and she picks herself up.
As a family, and with close friends, we have all rallied round to support Rebecca and each other through this challenging time.
My heart goes out to the hon. Lady for what she has been going through, and I am sure everyone in the House today would say the same. She mentioned dialysis, and I am going to mention a constituent of mine, a very young girl. This Facebook post hits home:
“Today 1,608 days with total kidney failure. Today 19,296 Hours spent on Dialysis. Today waiting for the precious call, a match has been found.”
Does the hon. Lady agree that when we think of such children, and people like her daughter, it is very hard not to support the Bill today?
Absolutely. As I have said, this sort of illness strikes indiscriminately, and when we attend appointments—I attend just about every appointment with Rebecca—we see everyone from very young people through to older people; we see people from all walks of life. It is heartbreaking seeing people with this sort of illness. Every one of those people has a family, has a story and has loved ones, and it is very difficult.
I want to talk a little about the impact of this kind of illness on the wider family. As Rebecca’s health rapidly deteriorated, she had to be off work sick quite a lot. She has had some considerable time off sick. Even though she is now back at work, she still gets days when, as happened this week, she is not very well in the middle of the day and has to come home. Dialysis does not mean that someone is fit, well, healthy and leading an absolutely normal life. She has been very lucky, as her employers, True Solicitors of Newcastle, have been an amazing support to her. They have done everything they can to help her. They have done fundraisers for kidney charities—I am thinking particularly of her colleagues Kay and Lindsey. If I am trying to get to the hospital from wherever I am when Rebecca suddenly takes ill, they will take her to hospital from work and sit with her until one of the family can get there. I want to thank them publicly, because many people in this situation are not so lucky and face losing their jobs, with all the hardships and problems that creates. So it is important to say thank you to people who have been fantastic.
Next I want to mention the renal unit at the Freeman Hospital in Newcastle. Not only is that a world-class unit, but it has some of the most amazing and dedicated staff I have ever come across. From the time someone walks through the door at the out-patients unit, the receptionist, Ann, is always smiling, always welcoming and always looking after them, and the same is true of everyone right through to the most senior doctors. We have seen a lot of different doctors as this illness has progressed. The whole team are amazing, particularly the PD nurses who are looking after Rebecca’s dialysis. They look after Rebecca, but they also look after her family and they have got to know us all, because we have all been there with her at different stages. They are the essence of everything that is great about our health service. They are working under enormous pressures on their time and resources, but they always have time for us. I want to say a personal thank you to them.
I know that this is not a political debate as such, but I am a politician, so I hope Members will give me a moment’s licence. I am going to say that I think the health service staff need a pay rise and the NHS needs more investment, because they are such amazing people and they literally make the difference every day between people living and dying.
The impact on our family has been huge. You go through a period of shock, disbelief and anger as to, “Why Rebecca?” More than one doctor has said to us through that period that it should not be happening to her, as she has been a fit, healthy young woman who has done everything right in looking after her health. They cannot find the reason this has happened. The emotions and journey you go through are like a rollercoaster, because we have to deal not just with the direct impact of what is happening medically to Rebecca, but with the emotional impact of seeing that what is happening to her might mean that my daughter might not be there when I am still here. That is not something any parent ever wants to consider. Although all my children are grown up, they are having to deal with seeing their mother coping less than I normally do. I am a fairly strident, coping kind of woman normally. All of them are dealing with the idea that their sister might not be here. That is all very, very difficult. So we have rallied round and all supported each other, and we remain very positive. Rebecca is very lucky that she has a brother and sisters, my sister, her husband and a great mother-in-law, who have all played their role in supporting this journey we are on, and continue to do so.
It is very difficult being on call for a phone call. My phone is with me all the time. It is very difficult working 300 miles away when you are in this situation. As we all know, we sometimes travel out of this country in this job, so whenever I travel out of the country on business with Parliament, I have a plan of how I am going to get back. It is important to thank colleagues in this place, from all parts of the House, who have given me a huge amount of support. The Whips have been fantastic; they have basically said, “Just go. Text us and tell us you’ve gone.” There is a slight personal thing in that as well, because our Deputy Chief Whip, my right hon. Friend Mr Campbell, has known Rebecca since she was a child. As many Members will know, I was his agent in 1997 when he got elected to this place, and Rebecca, being my daughter, ran one of the committee rooms. The support has been really lovely. A lot of the time in this place the differences that we have are highlighted, but at the end of the day we are all people trying to do the best for our constituents and we all care about people.
For me, as a mother, my natural instinct has always been to make things better for my children—that is what we all do. Rebecca is always going to be the baby I gave birth to 36 years ago; you love that child instantly and unconditionally, and that never changes. It is terrible to be in a situation where I cannot fix something that has gone terribly wrong. But what I can do, from the privileged position I have of being a Member of this place, is raise awareness and campaign for a change in the law, to that of deemed consent. The change in the law needs to come, and I want to touch on the investment that needs to happen on the back of that change—this has been alluded to in a number of contributions today.
This issue needs to be discussed in schools and among families, so that transplantation becomes a normal part of the conversation of life. We also need investment in the health service to support what I believe will be an increase in the number of available donor organs.
I wish the hon. Lady and Rebecca all the very best for the future. The Bill is really important, which is why I am here to support it, but will she also acknowledge, as I am sure she will, those live donors who give an organ? My friend Jane has recently given a kidney to her nephew-in-law. That is an incredible thing to have done—for many of us, it is difficult to imagine it—and it has turned around the life of her nephew-in-law, in the same way that, I hope, Rebecca’s life will be turned around eventually. Although the Bill does not cover such people, they also deserve the House’s praise. Hopefully, another good thing that will come out of this debate is raised awareness of that possibility.
Absolutely. Five members of my family, including me, put ourselves forward to be donors, but none of us matched. Matching is really difficult. One family member is now entering a pool situation, which is a bit like a swap shop of organs, in case somebody has an organ that fits Rebecca and my family member’s fits somebody else. That is a marvellous thing to do and the hon. Gentleman is absolutely right to draw attention to it.
As has been mentioned, presumed consent does mean that people have the right to opt out of giving their organs, and some people will. It is very important for that to be in the legislation. I absolutely respect people’s decision to opt out, because it is not the right thing for everybody. That is as important as changing the law.
My final words are for the families of donors: your selflessness in donating your loved ones’ organs at a time of such personal grief, to save the lives of people you do not know, is such a wonderful thing. Everybody should be grateful for that and thank those people. The grief of having lost a loved one carries on forever, but I am sure that there is some comfort in the fact that their family has helped and their loved one’s organs have gone to help someone else. It is important to say thank you. As a family member of, hopefully one day, a recipient, I want to say thank you from the bottom of my heart. They are very special people.
Let us send the Bill to Committee and change the law to save more lives, for the thousands who are waiting for transplants. Today, we see Parliament at its best, overcoming political differences for something that just needs to change. It is a day we should be proud of.
It is an honour to follow Julie Elliott. We have all learned that her daughter Rebecca is just as strong and brave as her mother. I congratulate Mr Robinson on bringing the Bill to the House and thank him for the compassionate and positive tone he has taken and for the collaborative way he is working across party lines to make sure that we drive this legislation forward.
The Bill is vital; we are talking about a genuinely life-or-death issue. It is a true tragedy that 456 adults and 14 children lost their lives last year while on the organ donation list. Every single day, somebody dies because they do not get the transplant that they desperately need. There are around 6,500 people waiting for organs who do not want to become a part of those statistics. This legislation is for them, and it is about saving lives. Organ donation does save lives: around 50,000 people in the UK are alive today because they have had an organ transplant. Some 80% of the population support organ transplants in principle and 25 million people are on the NHS organ donors list—including, I am proud to say, me. That number has risen by 75% over the past 10 years, and transplants are up 56%.
The Bill, as I am sure its author will agree, is about removing obstructions to donating while at the same time allowing anyone who does not wish to donate to opt out. As many colleagues have said, it is important that we do not attach any stigma to anybody who chooses to opt out for a variety of perfectly valid reasons.
Mr Robinson has identified a real issue that he supports, and I certainly have no intention of blocking his Bill. Nevertheless, does my hon. Friend share some people’s misgivings about the principle of the state presuming that people have consented to something when they have not, and the potential implications for public policy? Does he have any understanding of those misgivings about the state presuming that people have done something that they have not actually done?
My hon. Friend makes a perfectly valid point that I am sure will be raised again in this debate, but we are talking about a matter of life and death. All the surveys show the large number of people willing to support organ donation in principle, so it is alarming that the number who are actually on the organ donation list is relatively low, despite the fact that it takes literally two minutes. In an ideal world, everybody would be completely educated and would voluntarily make their own choice, but that is not happening. Many such issues will be raised in Committee; I hope we will be able to find a reasonable alternative.
Is my hon. Friend aware that in the past 10 years the number of organ donors has increased by 75% and the number of transplants by 56%? Is there really a need for the Bill?
There is indeed, because there is still a long way to go and people are still dying because they are not getting the donations or transplants that they need. There absolutely is a need to move forward with the Bill.
Let us look at the alternative systems around the world. The example of Spain is often mentioned. We are looking at the system there as some kind of model, although perhaps not an exact one. Spain leads the world with 43.4 deceased donors per million. It is joined at the top of the statistical league table by other opt-out systems in countries such as Croatia, Portugal, France and Italy. All these countries have better donor rates than England and all have opt-out rather than opt-in systems. Another advantage of such “soft” opt-out systems is that they do not deny or restrict the role of bereaved families, and they allow families to be consulted on the wishes of their loved ones. That is important.
One thing that surprised me about that 43.4 per million figure was how incredibly low it is. Half a million people die in the UK every year, yet just 1% of them die in circumstances or conditions that allow them even to be potential donors. It is important to note that just because someone is on the donor list, that does not mean that they will end up donating their organs, but we need to get the figure as high as possible to help as many people as we can.
We also need the supporting infrastructure to enable those who wish to donate actually to do so. We have all heard about people who have been willing to donate their organs but have, for example, passed away at the weekend in a hospital in which there is no capability to take the organs out of their bodies and transplant them. We need to look carefully at the supporting mechanisms for any changes that are introduced.
Quite a few colleagues have mentioned the need to raise overall awareness, which is linked to the need to encourage family consent. It is telling that in cases where a specialist nurse is involved, donation consent rates are 68.6%, whereas if a specialist nurse is not involved, consent rates plummet to 27.5%. That is clear statistical evidence that when people are provided with impartial but expert information about the possibility of donating, they are more likely to consent to donating their organs.
One problem is that there is still an awkwardness or queasiness about the idea of one’s body being examined and operated on post-death. We are often comfortable about that ourselves, but, in the horrible circumstances of someone passing away, particularly if the circumstances are tragic or the death unexpected, our families are particularly queasy about the idea. It is therefore vital that we continue to have these dialogues—that we all go home and have these conversations with our families, including our children, because of course children can also become donors. We must have informed conversations.
It is simply not right that 80% of people say that they would be willing to donate their organs, but only 36% actually register to do so. The number is increasing, but we need it to be much higher. In a well-publicised opt-out system, those figures could converge, and the 20% who are unwilling to donate would have a simple mechanism for making sure that they do not have to do so.
Many years ago, I was asked if I had a private Member’s Bill—I think it was during one of the selection processes—what would it be. It would be exactly this one. The hon. Member for Coventry North West should be in no doubt that I fully support this Bill, and I hope that many of, if not all, our colleagues will do so too.
Thank you, Madam Deputy Speaker, for giving me the opportunity to speak in this very important debate. I congratulate my hon. Friend Mr Robinson on bringing this Bill forward in the Chamber and for raising our awareness of the issue. I also thank and congratulate my colleague, my hon. Friend Julie Elliott, on her very emotional, personal and courageous contribution to the debate. I am quite confident that the public and Members will have taken note of it.
Others have spoken at length about the importance of raising donation rates. I have my own personal reasons for supporting the move: my younger brother has been waiting for more than five years for somebody, somewhere, to donate a kidney. He has dialysis four times a week. Another very close personal friend is also going through the same difficult times. Therefore, I have those reasons for supporting the Bill, as well as my own personal views, and a moral commitment to the cause.
As many colleagues have said, more than 6,000 people are still actively waiting for a transplant in the UK. Three people die every day because they cannot get the transplant that they need, ruining family lives across the country. Over the past 10 years, the number of donors has increased by 75%, which is fantastic and has saved countless lives, but there is still a great shortage both in the UK and—as we are a global community—internationally as well. If we go to any country, we are asked, “What are you doing in this field?” I am glad that, once again, Britain is leading in this field, so that the rest of the world can learn and pick up its ideas from here.
Only a third of eventual donors are registered to donate at the time of their death, and this number is even lower among the black, Asian and minority ethnic communities. BAME patients fare far worse than other patients. They will, on average, wait six months longer for a transplant than a white patient. I do apologise if my language is not politically correct, but for convenience, I will use black and white in this case. BAME people face the struggle of comparatively rare blood and tissue types and compatible organs. Although the overall number of donors has increased by 75%, BAME donations have only increased by less than 7%—a fraction of the rate for white people—and that has translated directly into deaths.
There is still a problem with public education and awareness. The families of minority populations are also less likely to consent to organ donation when asked after death: 64% of BAME families refuse permission for donation compared with only 43% for the rest of the population. An opt-out system rather than an opt-in system will increase the likelihood that donors of the same blood and tissue types are available to members of the BAME community. Increasing the number of compatible organs on the transplant list could save thousands of lives each year.
I thank the hon. Gentleman for giving way. He is making some extremely important points in his speech, and they are ones that I am particularly conscious of and really want to tackle. Let me amplify some of his points: of the 6,400 people on the waiting list, more than a 1,000 are from Asian backgrounds and 800 are black. I just wish to endorse his point that, in terms of racial fairness, we really need to increase donation from those parts of the community.
I am glad and thankful for the Minister’s very positive intervention and for the information that she has provided to Members in the Chamber. Activist groups and campaigners, such as the National BAME Transplant Alliance, support the move to an opt-out system, because it will ultimately save more lives across our diverse country.
I support everything that my hon. Friend has said. Like him, I represent a constituency with a very high proportion of people from BAME communities. There are not just fewer people consenting to donate their organs, but considerably higher rates of heart disease among these communities. Therefore, particularly for heart transplants, it is very important that we get as many people from BAME communities on to the list in future.
I thank my hon. Friend for that intervention. I was going to raise that matter myself, so I am thankful that he both highlighted and supported it.
Issues such as diabetes, high blood pressure and hepatitis are more common in BAME communities, making their members more likely to need transplant organs. BAME patients make up a third of the kidney transplant waiting list and wait an average of a year longer for a transplant than their white counterparts. Just one person can save or improve up to nine lives. One tragic death can give life to so many through organ donation and even more if they donate tissues as well.
Although ethnic minorities constitute only 11% of the UK population, they make up nearly a quarter of transplant waiting lists, and only six out of every 100 people signed up to the NHS organ donor register are from BAME communities. Opt-out can and will save lives. It respects religious differences and takes away no freedom of expression or belief. Countless constituents of mine have written to urge me to come to the House today to support the Bill, and I am proud to do so and to lend my support to my hon. Friend the Member for Coventry North West.
I am delighted to be here to support this Bill today. In doing so, I will not rehearse many of the arguments that have been so ably put already, not least by Mr Robinson, whose speech on its own was enough to persuade, I hope, all Members to support this excellent measure today. I am here to tell one story; a story that was initially raised by the hon. Gentleman. It is the story of my constituent, young Keira Ball, and her family.
On Sunday morning,
Two vehicles were involved in the accident, one of which was a car carrying members of the Ball family: Keira Ball, her younger brother Brad and their mother Loanna. Their vehicle was in a collision with another. The paramedics, emergency services and all the NHS staff of the three separate hospitals to which those three people were taken undertook brilliant work. But young Keira Ball sadly passed away two days later, on the Tuesday afternoon. She was nine years old. Her mother and brother were very seriously injured. Immediately after Keira’s death, her father Joe took the agonising decision that he wanted his daughter’s death to give life to other people and that young Keira’s organs should be donated.
I have had contact this week with Joe and Loanna Ball, who live in Barnstaple in my constituency. In particular, I sought their permission to tell Keira’s full story today. I wanted to ensure that they were happy for me to do so, which indeed they were. They recognise, as I do, that this story could be an inspiration to others. It could ensure that others sign up for organ donation and will give strength to those who face similar circumstances.
Following the decision by Keira’s father, four people are alive today who otherwise would not be. Keira donated her kidneys, heart, liver and pancreas. One of her kidneys was given to a man in his 30s who had been on the waiting list for an organ for two and a half years. The other kidney was given to a woman in her 50s who had been on the waiting list for nine and a half years. A young boy received Keira’s pancreas and liver. Keira’s heart was given to a 10-year-old boy who has very much become the figurehead of this campaign and who has been mentioned during this debate: Max Johnson. It is Max who is in many ways at the forefront of this excellent campaign. Max is alive today. It was so good to hear from Mr Robinson and those who were at the reception last night that Max’s mum Emma is here to watch the debate and to hear that Keira’s family are so pleased to have given life to her little boy.
That is Keira’s story and it is Max’s story. It is a story of how a very brave—and, I am sure, very difficult—decision to allow Keira’s organs to be donated has given life to four other people who otherwise would probably not be here today. That is surely the best possible argument for supporting the Bill, which will ensure that more organs are available for donation. Keira’s and Max’s story demonstrates that more organs mean more saved lives.
I welcome and fully support the Bill. Many people deserve credit for getting it to this stage, including the hon. Member for Coventry North West, whose Bill this is; other hon. Members mentioned today who have pioneered similar legislation that has not reached this stage for various odd parliamentary reasons; the Government, who have said that they fully support the Bill; and the Minister for personally driving it forward. I also give credit to Her Majesty’s Opposition, and was delighted to hear their spokesperson ensuring the smooth passage of the Bill from the Dispatch Box. It is extremely significant that the names of right hon. and hon. Members from all seven parties represented in this House appear on the Bill.
I pay tribute to the campaign by the Daily Mirror that features Max, who has life because of young Keira Ball. It has really helped to push this issue forward. Many people deserve, quite rightly, to have a stake in what I sincerely hope will be the Bill’s success. As I support the Bill, which I will do at every stage, I will be thinking of Max and Keira. It is their Bill and it is thanks to the brave decision taken by Keira’s dad on that most difficult of days that four more people have life who might otherwise have not. That is the best argument for seeing this Bill reach the statute book.
It is a pleasure to follow Peter Heaton-Jones, who spoke most movingly about the incredibly contribution that his constituent Keira Ball and her family have made to this process. I pay tribute to the role that he has played in bringing that to our attention. He was also right to talk about the cross-party nature of this campaign because this is Parliament at its best. This is how the public expect us to serve in this place—to work co-operatively with others in order to make really important changes.
The House faces a clear choice today. We have the opportunity to make a change that will add huge value to our country and that will undoubtedly save people’s lives. It all boils down to whether we take the opportunity to save hundreds of lives over the coming years. I very much hope that we do not miss that opportunity and that we work together to makes this change.
It has been a real privilege to be a part of the campaign that has got us to this point. In particular, I pay tribute to my hon. Friend Mr Robinson, who has provided real leadership through his promotion of the Bill. He and I have sat through many meetings—I have lost count of quite how many—and it is his focus and determination to lead us to this point that have meant that we have an opportunity to do something very worthwhile today. I also pay tribute to all the other Members who have provided such outstanding support, particularly my hon. Friends the Members for Newport West (Paul Flynn) and for Sunderland Central (Julie Elliott), and other Members—too numerous to mention—right across the House and the political spectrum who have worked together to get us to this point.
It has been mentioned before in this debate, but I also want to take this opportunity to pay tribute to Trinity Mirror. The Mirror Group has run a relentless and tireless campaign. Its contribution to this private Member’s Bill and the broader campaign has been massive. It has conducted itself in the very best traditions of a free British press. I know that I speak for all Members when I pay the organisation the largest compliment that I can. We are grateful for everything that it has done.
It is crucial today to pay tributes and to give credit where it is due. I am looking very firmly at the Minister, who has responded in the most brilliantly sensible, co-operative and constructive way. We have sat in a lot of meetings in different places over many months, and in my relatively short time in this House I have not found anybody who has been easier to deal with than she has. She has been a great pleasure to work with, and the leadership that she has shown has been instrumental in ensuring that we have the opportunity to pass this important Bill. I thank her and her officials, who have done an important job in getting us to this place. I urge all hon. Members to think of the common good and to act in a way that I firmly and passionately believe will save countless lives.
It is worth reflecting that of all the people who died in the UK last year, only about 1% died in circumstances that would have made donation possible, meaning 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 donation to take place. This is one of the main reasons why today in the UK more than 6,000 people are waiting for an organ donation and why nearly 500 people died last year while waiting. This loss of life is devastating but not inevitable.
Today we have a precious opportunity to do something about it, and we must not miss it. Moving to an opt-out system for organ donation will add thousands of names to the donor register, meaning that once the Bill is passed hundreds of lives will be saved. Let us be clear about what the Bill is not. It is not about the state taking control of people’s organs or shaming individuals into donating. If people want to opt out, that is absolutely fine, and I am hugely respectful of any decision people want to make. No questions will be asked; there will be no hard feelings. The Bill is about making it easier for those who might wish to donate to do so.
Mention has been made of religiously inclined Jewish people in this country. Some people will feel uncomfortable about the concept of donation. Does my hon. Friend agree that people from various religious traditions—not just one—might feel uncomfortable about this and that it is entirely right to give them the opportunity to opt out, if they wish to do so?
I wholeheartedly agree with my hon. Friend. He makes an incredibly important point. This is absolutely not about shaming anybody into doing anything they do not want to do. If anybody, for whatever reason, decides they do not wish to be part of the scheme, they have the right to opt out. It is incredibly important that we be clear about that.
It is also worth reflecting on the point made by my right hon. Friend Hilary Benn: 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, if people feel they can have that conversation with their loved ones, that they do so, but we understand that people lead busy lives, and many of us will be guilty of not having had these conversations and of putting these tasks on hold.
I believe, however, that we can no longer afford to ignore this issue. It is a matter of life and death for thousands of people around the country, which is why we must increase the number of people on our donor register and make sure we save as many lives as we can and that no more people die waiting for a transplant simply because a potential donor was not able to sign up.
I thank my hon. Friend for making such a powerful speech. We often think of donors as being younger people whose bodies and organs are in particularly good shape, but my beloved grandfather, when he died a few years ago—I think he was 96—was able to donate parts of his eyes and so give the gift of sight to other people. We received a letter from the hospital telling us how many people he had been able to help. Everyone has an opportunity, no matter how old they are, to offer that amazing gift to another after they have gone.
My hon. Friend makes an incredibly important point, as she always does. As others have said, the Bill is only a part of the way to increase the number of people, whatever their age or background, willing and able to contribute their organs. In concert with the Bill, however, we also need to have an open discussion in our communities about the importance of making a proactive contribution in this way.
My hon. Friend Paula Sherriff made a very important point about age. I have come here, as somebody of a certain age, with my donor card, which I have carried all my adult life. There is the thought that the organs of someone my age might not be in as good a state as a young person’s and therefore might be less likely to be used in transplants, but bodies can be used for medical research—perhaps into ageing, for example. I like to think that people of my age could still donate their bodies, even if they die from natural causes, and I will make sure that that is included in my will, so that my body could be used for medical research or perhaps for teaching medical students.
My hon. Friend makes an important point. It reinforces the notion that, in addition to legislation, all of us who believe in the value of organ donation should ensure that as many people as possible register. The Bill will play an important role in that, but all of us, as leaders in our communities, have an absolute responsibility to get that message across to our constituents.
I do not intend to detain the House much longer, but I do want to make the point that we are lucky and privileged today to be joined by Emma Johnson. Emma is often referred to as “Max’s mom”, although I do not think she minds. As the hon. Member for North Devon mentioned, Max is the 10-year-old who fronted the Daily Mail’s campaign on organ donation. He was kept alive by a tiny metal pump that was in his chest for seven months. I am delighted to learn that, after finally receiving a heart transplant, Max is doing well. His story and that of the sacrifice made by Keira Ball, spoken of movingly by the hon. Gentleman, should serve as an inspiration to us all. We are here today to save lives like Max’s: those of the thousands of people who would benefit from the change set out in the Bill. We have a precious opportunity to make that change today. We have at our fingertips the opportunity to make a powerful, important and meaningful change.
It is not entirely the same, but my son Max is alive today because he received a stem cell transplant. Does my hon. Friend agree that we need to do more to encourage people on to the stem cell register and that, as with transplants, we must get rid of the myths—in this case, that stem cell donation is painful and difficult and that they take part of your spine? None of that is true. It is a very simple process, and one by which many more lives could be saved.
I absolutely agree with my hon. Friend. None of these things should be particularly contentious. I understand that there are points of debate and that some hon. Members and people in the country have legitimate differences over these most sensitive of matters, but I am encouraged by the level of support today and heartened that we have the support of the Prime Minister and the Leader of the Opposition. It is incredibly encouraging that the Minister is very supportive and that the Opposition Front-Bench spokesperson has given a clear commitment that they will support the Bill. There is overwhelming support for the measure in the House today. So far we have seen Parliament at its very best, and I am keeping my fingers crossed that we can maintain the consensus for the next couple of hours.
I support the Bill today. Like my hon. Friend Philip Davies, I am not entirely comfortable with the principle of the state taking control of bodies without express permission, but I think that that option is far less bad than the situation whereby hundreds of lives are unnecessarily lost every year effectively through inertia. We know that action could be taken that most people would agree with. Mr Robinson referred to the massive gap between the number of people who agree with donation and would be willing to be donors and the far smaller number of people who actually register as donors.
None the less, a number of points have been raised with me by constituents that I hope the hon. Gentleman and the Minister will consider during the passage of the Bill to strengthen it further. First, we should strengthen the safeguards—I was reassured by the hon. Gentleman’s comments on this—to make sure that hospitals are absolutely sure whether people are on the register. It must not be a question of, if systems are down, hospitals taking a chance and operating anyway. If people have actively opted out, we need to have belt and braces to make sure that their choices are respected. Secondly, we need to strengthen the existing law in other areas to make sure that in no circumstances can organs be harvested to be sold, which would clearly be outside the scope and the intention of this Bill.
This is a very worthwhile and important Bill. My constituent Sam emailed me this morning to say:
“This important change in legislation will prevent the needless waste of usable healthy organs being sent for cremation when they could instead change many thousands of lives.”
I pay tribute to my hon. Friend Mr Robinson for introducing this Bill, which speaks to our common humanity. To be in the Chamber today to support it is a great honour for me. Three people die daily in the UK because of the lack of available organs for transplant, and this Bill would increase the chance of an unwell person and a life-saving organ being united.
I pay tribute to my hon. Friend Julie Elliott, who described very similar situations to those of a member of my family who was successful, in the end, in getting their transplant. She was a mother with a newly born third child. We did not know what was wrong with her. She had no energy, could not pick the other children up from school, was not eating, and was often going to the hospital. Eventually, after her husband took her to hospital, she was whisked off to Birmingham. Fortunately she got a kidney transplant while she was there, but unfortunately it was not successful, and we were told that it was highly unlikely that another suitable kidney would be found within the time when it was needed. Thankfully, we got that kidney, she lived, and three children still had their mum. The trauma that the family went through during that time was just unbelievable. We saw the care that the immediate family had to give those three children when she and her husband—my cousin—were in Birmingham. They took care of the children and did what they could. We have been the recipients of the saving of a family—a dear family.
This Bill will change individuals’ autonomy to choose what happens to their own body. Opt-out organ donation carries with it the weight of 80% public support, the support of the British Medical Association, and cross-party political support—all seven parties are represented among the Members who have sponsored the Bill. It also carries the support of past and present Prime Ministers.
I would like to talk about another case in the town that I represent. Last year, tragically, we lost a little girl aged four, Violet Grace, who was killed in an accident on her way home, with grandma, from the nursery. It was a criminal act, with a car going at 80 mph in a 30 mph zone. The parents of little Violet Grace took the brave decision to donate their four-year-old daughter’s organs. Today, we know that two lives were saved. The family tell me, and all the town, that they get great comfort from that. When her little brother asks about her, they try to explain that to him so that he can grow up with that knowledge.
The parents of Violet Grace have been joined by the widow of another person in my town, Steve Prescott, a former champion rugby league player. He had a multiple organ transplant that was successful, but unfortunately there were some other complications.
Does my hon. Friend agree that although it can sometimes be a difficult conversation, these situations also bring about the opportunity for families, friends and loved ones to talk about what they want to happen after their death, including things like funeral arrangements? I knew from a very early age that when I went, I wanted to donate my organs. I still have my original organ donation card, which is over 30 years old now. Hopefully this debate will get the media attention that will encourage people to have that conversation with those they love.
Yes, I do agree.
Steve Prescott’s widow, along with colleagues, friends and members of the community of St Helens, set up the Steve Prescott Foundation. She also approached the parents of Violet Grace to give comfort and support. They have set up a huge and very successful campaign in our town, urging us all to donate our organs. Steve died, unfortunately. The actual transplant—a multiple organ transplant—was a success, but it was other things that killed him. I pay tribute to the families involved, and to the parents of little Violet Grace for their bravery. This Bill would have saved them the trauma of making that decision at such an emotional time when their little girl was dying. It could save people a lot of trauma.
This is the moment to act. A move to opting out would save a predicted 500 lives a year. Done properly, with the right publicity, the right engagement and the right involvement of all communities, changing the law on organ donation should have the support of all of us. The support shown here today is really gratifying, and I pay tribute to the Daily Mirror, which has run a fantastic campaign. It has urged people sign up for donation even now, without waiting for the change.
I understand—perhaps the Minister could enlighten us on this—that the Government intend to go out to public consultation on how opt-out donation would be implemented sensitively. The proposal in the Bill to involve a person’s family in decisions, as a safeguard against any unregistered objection to donating, is an important protective measure that will reassure families who have concerns.
Only 5,000 people a year in the UK die in circumstances where they can successfully donate, while 6,500 people are currently waiting for life-saving donations. None of us ever expects, or perhaps even thinks about the possibility, that we or someone we love may need an organ from someone else to survive, but many Members have pointed out how it can suddenly happen in our own families. However, there is a gulf between the supply of organs and the urgent need for them, and it is time that we made a conscious decision to take affirmative action. The time is right—80% of the public support organ donation, but only 36% are on the register. That needs to be addressed.
In the first six months since Wales adopted the opt-out, 60 organs donated by 31 people have been transplanted. Consent had been received from 50% of those people. Those are the latest facts from Wales. An opt-out system has therefore been proven to work, even in its infancy. I urge the House to back deemed consent as a proven, popular policy.
The British Medical Association makes a point that goes to the heart of this debate. As a result of this Bill, the choice for the individual about what should happen with their own body will remain the same—to donate, or not to donate—but a change in the law means a switch of the default position, towards donation and towards saving more lives. I urge the House to support the Bill.
I begin by congratulating Mr Robinson on getting this Bill here today. I echo the support for the Bill that Members throughout the House have expressed.
When three people die a day because of a lack of organs, while eight out of 10 people say they would be willing to be an organ donor but are not formally on the register, it is time that we take action. I can only begin to imagine the emotional rollercoaster that families and people waiting for organs must go through in the long and trying wait, which can be years. I appreciate the personal stories that Members have shared today, which must be quite distressing. I think we have all gained greater insight.
I do not want to reiterate the merits of the Bill, because we all seem to be very much in favour of it. I want to talk briefly about how we can make sure that the Bill is as successful as it can be. As I alluded to in my intervention, I think that itis only part of the solution and not the complete answer. It is the essential building block, and it is important that we are now laying that building block, but I want to us to make sure that we build the house.
One key issue is fostering a culture and making sure that we educate people from a very young age, so that they see organ donation as a positive thing that they want to do. That will counter the argument about people potentially seeing it the state owning or seizing our organs. It needs to be seen as people giving their organs to help other people.
We need to spread the message that families should have a conversation about organ donation. It should not be something that we do not like to talk about. We should actively promote a conversation so that when the time comes, people are aware of their children’s or spouse’s decision. That will prevent any possible overriding of the decision, as we see in Spain. At the moment, it is estimated that only half of all families have that conversation.
Fostering a culture in which people want to donate their organs is achievable. At the moment we have one of the lowest donation consent rates in Europe. However, we have one of the highest rates in Europe for donating living kidneys. That implies that it is not against British culture to donate organs, but that we are doing something fundamentally wrong.
One way to achieve that culture is to ensure that there is absolutely no stigma around opting out. While some of us might be organ donors, that does not mean that everybody has to be, and we need to appreciate people’s religious cultures, customs and beliefs. I hope that people will be able to opt out of donating certain organs. I know that people of some religions, including even some denominations of the Christian faith, do not want to donate their heart, so it is very important that we do not exclude people from this process.
About 10% of people who are signed up to the organ donor register have excluded donating their eyes, sometimes because they are a bit squeamish and sometimes because of the thought of someone else looking through their eyes in the future. Does the hon. Lady agree that in registering as many people as we can to donate, we should preserve people’s ability to opt out of donating organs that they do not wish to donate?
I agree. Choice is the key to making the Bill as successful as possible, as is education. Some people might donate those organs if they knew how the process would work, but there needs to be an element of personal choice. It is our body, at the end of the day, and we should be encouraging people to help others rather than forcing them, which will not be successful.
Members have made the point—I do not want to labour it, but it is important—about reaching out to all communities, including those from ethnic minorities, among whom the number of donors is particularly low at the moment. In fact, shockingly, in March 2017 there were 634 people from the black community in need of organs, and only 72 people on the donor list died and were suitable organ donors. That is a really small proportion.
I thank the hon. Lady for raising that issue. Our community is experiencing what is called a silent crisis, because of the lack of knowledge and willingness to discuss organ donation with family members and concerns about the integration of the body after death. I take on board what she says—we must be mindful that there is a lack of knowledge among our community, and the Bill would improve that.
I thank the hon. Lady for her intervention.
Only 1% of people a year die in circumstances suitable to allow their organs to be donated. It is important that we have an honest conversation today and do not say that the Bill is the panacea that will solve the problem, and that if someone is on the organ register, they will automatically get a donation. That would give people false hope. That statistic also means that we should potentially review the current regulations on age restrictions for the donation of certain organs. For example, heart valve donations have an age restriction of 60, whereas countries such as Spain just look at the quality of the organ.
The most important mechanism for ensuring that the Bill is as effective as possible is transport infrastructure and investment in staffing. It is no good unless we have enough helicopters, bikes, trained staff and support workers to facilitate the Bill. We must ensure that it does not just help people who live in urban areas. My constituency is very rural in parts, and some areas are harder to get to, but that does not mean that people there should be any less likely to benefit from donations. Other countries that have introduced Bills such as this, including France, Sweden and Bulgaria, have seen a reduction in their organ donation rates partly because of a lack of investment in infrastructure, so that is crucial.
We should be quite bold in reviewing this issue. Some countries have adopted a policy that I admit I was originally very uneasy about, whereby someone who is an organ donor and has not opted out of the system is higher on the priority list to receive a donation. I now think that that is quite fair, because if someone is prepared to give a donation, they should be more likely to receive one.
The UK has one of the lowest donation consent rates in the world, and that is really not good enough. I am hugely supportive of the Bill, but I echo the caution that it depends on the infrastructure, education and support that we give people, so that we can ensure that the Bill is as successful as possible.
I thank my hon. Friend Mr Robinson for introducing this important private Member’s Bill.
The NHS has just reached the historic milestone of 70 years. As a country and as a society, we are proud of the landmark advances we have made within that time. Because of advances in organ donation and transplantation, 50,000 people are alive today. Most people are willing to donate their organs after they die, but only 36% of the population are on the organ donation register. Organ donation is increasing gradually, but sadly it is not keeping pace with the number of people on the transplant waiting list.
The British Heart Foundation highlights the fact that an average of three people per day die in need of an organ. As someone who was a cardiac nurse in a previous job, I am only too aware of how desperate a patient can become when waiting for an organ to become available. I saw at first hand the distress that people suffered while waiting for a heart transplant or for another organ.
In Spain and Belgium, a softer opt-out approach has facilitated a cultural change that has generated higher donor rates. That is why I am here today supporting my hon. Friend’s Bill, which will address this bleak statistic and bring the discussion of organ donation back to the dinner tables of families across the UK. I also express my sincere thanks to the Daily Mirror for its campaign in support of the Bill, which has shown the public the gift of life that is given by those who donate organs.
One organ donor can transform as many as nine people’s lives. As has been mentioned, the UK has one of the lowest family consent rates in Europe. In Wales, the Welsh Government bravely introduced deemed consent. The rate at which Welsh families are approving rather than refusing the donation of their loved ones’ organs is showing a marked increase compared with the rest of the UK. The latest Welsh organ donation and transplantation statistics display a 72% consent rate, putting Wales above other UK countries.
My hon. Friend gives the excellent example of how Wales is leading the way in changing the emphasis on organ donation. Does she share my dismay that no one from the Scottish National party has joined the debate today? This is a cross-border issue, and the SNP blocked a private Member’s Bill by Anne McTaggart MSP in the Scottish Parliament. Why has the SNP not led the way on this issue?
I share that concern, and I had hoped that today we could have cross-party consensus. This issue is something on which we can all come together.
I represent Lincoln in the east midlands, where organ donation is the lowest in the UK. In a year, there were just 74 organ donors in the whole of the east midlands. In my constituency, there are around 40,000 registered organ donors. I am one of them—my card is in my bag. I am proud of the people of Lincoln, but even though that number represents a pool of opportunity, only a small number of people on the register pass away in such a way that allows their organs to be donated. In the last five years, only 10 deceased donors in Lincoln have been able to donate their organs.
Passing this Bill could save 500 lives a year. We need sensitive dialogue with those suffering from serious illnesses about the possible lifesaving capacity that their donation could have, should the worst occur. Conversations with grieving families can often be crucial in that process.
Yesterday, I spoke about the loss of my daughter, and when any family member is lost it is a terrible, terrible thing that stays with you forever. However, if someone can donate an organ and turn a negative into a positive, how much better is that? How much better would it be to salvage some positivity out of the situation? The Government have announced a consultation on opt-out consent on organ donation, which closes on
I congratulate Mr Robinson on promoting the Bill, and I know that it will make progress today. As many people have said, 80% of British society support organ donation, but 20% do not. I want to speak on behalf of that 20% to ensure that they are carried along with the debate, rather than left behind.
A gentleman in my constituency, Vijay Patel, was recently unnecessarily killed, and his family took great comfort from the fact that his organs were used to help other people. For me, that is such a gift, and I commend anyone who donates, and their families, for allowing the donation to take place. Many people prepare themselves to be organ donors after they die, and their families are an integral part of that process. Within that wider framework, the crucial role of the donor’s family must be understood, because their role regarding the ownership of the body after a person dies, and their duties towards it, is a central aspect of the grieving process.
There has recently been a lot of concern about a north London coroner who refused to release bodies, which is causing a great deal of concern to my constituents. It therefore follows logically that the family must be involved in organ donation, and I believe that their consent is paramount at the crucial time. Those families need reassurance along their pathway towards consent.
It has been said that there are religious differences on donation, but that is incorrect. Both Islam and Judaism allow organ transplants from live and deceased patients in order to continue and save lives. One factor that perhaps some are not aware of, and that might influence the decision-making process of some families, is how the point of death is decided. Some people regard death as defined by cardiovascular criteria, which is when the heart ceases to function. Others use cessation of brain function—brain stem death—as their criterion. Those two distinctions sometimes make people uncomfortable with donation.
The National Institute for Health and Care Excellence recognised both definitions of death when it formulated the NICE guidelines that explain how healthcare professionals should support a bereaved family when discussing organ donation. There is one pathway for those who accept only cardiovascular death, and another for those who accept brain stem death. As a result, families are helped to understand how they might be able to combine deceased organ donation in a way that does not interfere with some religious traditions.
Enabling someone accessible to guide a family through the donation process is a humane, sensible and constructive proposal. A properly trained and resourced transplant co-ordinator should be able to do that, as it is the most important way in which families can be supported at a terrible time in their lives. In practice, however, under the system proposed, there would be less institutional incentive for health services to employ such people.
The Government are aware of the issues around transplantation, and they cannot plead ignorance in that our religious communities are being unresponsive to human need. In 2013, leading Muslim and Jewish groups wrote jointly to the Government suggesting a way forward in which an enhanced and improved opt-in system could be introduced that would alleviate their concerns. Improvements would include a Government-backed statement that Jews and Muslims could sign, which would enable them to donate organs in a manner compatible with their beliefs. If that approach were to be adopted, it would enable the two communities to be even more supportive of an opt-in system than they have been in the past. That proposal has been raised on several occasions, but I am afraid it has been ignored. The hon. Member for Coventry North West mentioned former Chief Rabbi Lord Sacks, who he said opposed such measures. As I understand it, however, the current Chief Rabbi, Rabbi Mirvis, is in favour of the proposal I have just outlined.
Life, and indeed death, has changed for many people. More people want, understandably, to spend their final months at home. If they die at home, organ donation is much less likely. Healthcare professionals who need to secure consent for donation must have a conversation with organ donors, and their loved ones, about why they are best placed to give the gift of life if they remain in hospital. That conversation is a natural feature of an opt-in service. Under an opt-out service, there will be little incentive to have that complex discussion with potential donors and their families. The result could be that patients might drift to spend their last months in hospital.
May I ask my hon. Friend, as a doctor, how quickly the medical profession can assess whether someone who has died is the right sort of person for a donation? So few people are the right fit for a donation—1%, as I understand.
I cannot mislead the House, because unfortunately I am not a medical doctor and I am not able to answer that question. I am certainly content to talk about socio-economic deprivation in places such as Cornwall, which was part of my PhD thesis, but I will leave the issue raised by my hon. Friend alone. He mentioned the 1%, but other potential donors and their families could be intimidated by clinical settings, have problems with language skills or be too emotionally distraught actively to engage with a system that lacked incentives to ensure professional support throughout their decision-making process. Such potential donors and families could find their rights eroded in that practice.
My hon. Friend Philip Davies made a point that I wish to echo. The underlying question raised by some considerations is whether public services should treat patients and their families as citizens whose active consent must be sought as a legal duty, or as subjects whose ability to choose whether to donate or not depends on the goodwill of well-meaning but overstretched professionals. Ultimately, an opt-in system that harnesses the role of both religious and civil society to increase organ donation from deceased donors is, for me, the best way forward to maximise organ donation while defending not only religious freedoms, but the rights of all potential donors and families.
I will keep my remarks brief, Madam Deputy Speaker. I too support the Bill and I am delighted that Mr Robinson—my hon. Friend; I have known him for a number of years—has used this slot for this very noble cause.
I would like to mention the Bright Green Stars campaign in Torbay. Four years ago, the Bright Green Star Man hung up stars across various points in the bay to encourage more people to think about organ donation. When his daughter Lottie was three, she was one of the lucky ones to receive a transplant very quickly.
The safeguards in the Bill provide an option for those who strongly object to the idea of organ donation, and the ability for families to provide evidence that someone would have objected, on reasonable grounds, if they had known about the opt-out system. Let us be clear: I do not see my body as a piece of property that my relatives will inherit on my death. I see it as something very special, and if there is something we can do to help people to continue to live after our life on this earth has finished, I think that is totally noble. One way I can help is not just by registering to be an organ donor, but by supporting the Bill today. It will save lives in Torbay and across the country. I hope the Bill receives its Second Reading.
I thank my hon. Friend Mr Robinson for securing this very important debate, for introducing this very important Bill and for his powerful and moving opening speech. I would also like to thank Dame Cheryl Gillan, the hon. Members for Mid Worcestershire (Nigel Huddleston), for North Devon (Peter Heaton-Jones), for Dudley South (Mike Wood), for Chippenham (Michelle Donelan) and for Hendon (Dr Offord), and my hon. Friends the Members for Ealing, Southall (Mr Sharma), for Barnsley Central (Dan Jarvis), for St Helens South and Whiston (Ms Rimmer) and for Lincoln (Karen Lee) for their excellent speeches.
In particular, I pay huge tribute to my constituency neighbour, my hon. Friend Julie Elliott. She spoke so bravely and movingly about her daughter Rebecca, who as we heard has been on dialysis for a year awaiting a kidney transplant. I hope from the bottom of my heart—I am sure we all do—that her wait is over very soon and she is successful in receiving that gift of life from a wonderful donor.
This has been an excellent debate and an example of this House at its best, as it often is on Fridays during debates on private Members’ Bills. I would like to thank hon. Members who have previously brought this issue to our attention over the past decade or so, including my hon. Friends the Members for Mitcham and Morden (Siobhain McDonagh), for Newport West (Paul Flynn) and for Barnsley Central (Dan Jarvis).
I commend the Daily Mirror for its fantastic campaign to raise awareness of organ donation since the case of Max Johnson, who we have all heard so much about this morning. He was then a nine-year-old boy in need of a new heart. I understand he is now 10, which is fantastic. I want to thank the hon. Member for North Devon for telling us all about Keira Ball, Max’s donor, who I understand saved four lives. I thank her very, very brave family for taking that brave decision on that most awful of days. I also thank the more than 13,000 people who have now signed the Change.org petition.
I also commend the scriptwriters of “Coronation Street”—of which, it has to be said, I am a huge fan as a northerner—for covering this issue so well. I note that the character Carla Connor this week received a kidney from her half-brother and that all is going well. At their best, soaps can play a huge part in helping to inform the public on such issues. I hope the storyline will touch on the importance of being on the organ donation register. Finally, I pay tribute to the thousands of people who have already participated in the Government’s public consultation on organ donation. I encourage others to do so, if they have not done so already, to let their voices be heard.
The topic of organ donation is understandably an emotional one, but I am pleased that so many people are now engaging in this debate and that we have the opportunity to discuss it in the House today. This debate and the publicity around it may encourage families up and down the country to have that important discussion about organ donation before the inevitable happens. There is no doubt that these discussions need to be had and that we need more organ donors in England. Almost 25 million people are on the organ donation register, but according to the NHS blood and transplant service, 7,000 people are waiting on the list for new organs. For them, it really is a life or death situation, so it is important that as many people as possible sign up to the organ donation register.
Over the past five years, almost 5 million people have joined the register, and in 2016-17 we saw the highest ever deceased donor rates in England. More than 50,000 people are living with a functioning transplant—Max is one of them—thanks to organ donation and transplantation in the UK. These are welcome developments, but we still have a long way to go. We currently lag behind other western countries. Tragically, around 1,000 people die every year—that is three a day—while waiting for a transplant. To save those lives, we need more people on the organ donation register making those decisions with their family’s knowledge, so that when the time comes, more lives can be saved.
My hon. Friend makes an excellent case by citing statistics in England, but this is a cross-border issue as well. A great strength of our national health service is that no matter what part of the UK someone comes from, they can benefit from an organ transplant. If someone in Dumfries needs a kidney donation and the donor is from Carlisle, there will be no barrier or border on the route to getting access to that transplant. That is why MPs from all parts of the UK should support organ donation changes in all parts of the UK. That includes the Scottish National party; it is just a shame that SNP Members are not here today. Does my hon. Friend agree?
Yes, and I had not noticed that nobody from the Scottish National party is here. I do not know what the situation is in Scotland, but we still want people there to be organ donors. I am sure that Rebecca, the daughter of my hon. Friend the Member for Sunderland Central, would not refuse a kidney, whether from Scotland, Wales, Northern Ireland or anywhere, so that is a very good point.
Will my hon. Friend recognise the great strides that the Labour party in Scotland has made in trying to bring in legislation on opt-out organ donation there? It is unfortunate that the Scottish National party blocked the progress of a Bill from Anne McTaggart MSP in the last session of the Parliament, but there is still hope, because a private Member’s Bill is progressing through the Scottish Parliament. We hope to have Labour and cross-party support to see such legislation progress in Scotland, as well as in Wales and England.
Excellent. I am really grateful to my hon. Friend for updating us all on the situation in Scotland because, as I said, I was not aware of it. I commend that Bill and hope that our SNP friends up in Scotland will act on and progress it as soon as possible.
I pay tribute to colleagues in Wales, my hon. Friend Mr Robinson and colleagues from across the country. We heard very moving stories from colleagues from North Devon and other parts. We as a House have demonstrated the ability to work together today, and that is so important. One of the great strengths of the debate has been the way that we have focused on families and listened to their stories. For me, that has been a deeply moving experience. I commend to colleagues the importance of continuing to listen to families as the campaign goes forward.
Families are at the heart of this, as my hon. Friend the Member for Coventry North West, who is promoting the Bill, made clear, and I am sure that the Minister will as well. It is important that families’ voices are taken into consideration when these discussions take place.
I know that I am not alone in this House in carrying a donor card and being on the register. Like many other organ donors, I signed myself up because of a direct family experience. My Aunty Ella, who is sadly no longer with us, was one of the first patients to receive a kidney transplant at the fantastic Freeman Hospital in Newcastle way back in 1967. It was pioneering surgery back then, and it is great to hear my fellow Sunderland MP, my hon. Friend the Member for Sunderland Central, also commending the work of the fantastic renal team at the Freeman Hospital who are currently treating and supporting her daughter Rebecca so well. My Aunty Ella lived a full life because of her transplant. In those days, it was perhaps not as long as she would have liked, but she was able to see her children Norman and Stephen —my cousins—grow up to get married. All she wanted to do was to see them grow up, but she lived on to see them give her grandchildren. That is what organ donation is all about: it gives people a future. Just one donor can save up to nine people—as we heard, Keira Ball saved four—and it can give those nine people a future with their loved ones, which is why it is so important.
Of course, there are some concerns among some religious communities. We heard about that earlier from Dr Offord, and I know that my hon. Friend Jonathan Ashworth, the shadow Secretary of State for Health, has met representatives of one particular Jewish community to discuss their concerns. There are also concerns among black and minority-ethnic communities, as we heard from my hon. Friend Mr Sharma. Although they are more susceptible to illnesses such as diabetes, hypertension and even heart disease, only 35% of black and Asian people in the UK—where the population average is 63%—agreed to organ donation last year.
The same applies to stem cell transplants, which I raised earlier. It simply is not acceptable that those who happen to be white probably have an 80% to 90% chance of finding a possible match, whereas for those who come from a certain ethnic background the figure could be as low as 30%. I do not think we would accept that in any other walk of life.
My hon. Friend has made exactly the right point. This does not apply only to, for instance, kidney and heart transplants; it applies to the whole donor register. The Government must listen to the concerns of black and Asian communities, not just during the consultation but beyond, so that we can develop a solution to this problem.
That is precisely the point. It is a question of education and public awareness as well as the acceptance of the sensitivities that exist among all people, not just members of particular religious or ethnic-minority communities.
I am sorry to interrupt my hon. Friend while she is making such a strong point. One of my constituents rang me after my speech to suggest first that Members of Parliament could run roadshows, along with members of their local voluntary sectors, to raise awareness and to encourage people to register as donors and secondly that we could encourage the local education system to enable schools and parents’ associations to run awareness sessions. Would that not be the best way of both raising awareness and engaging with communities?
Absolutely. I think that schools are an ideal forum for a number of public health awareness messages on a host of issues to be delivered to young people.
Perhaps the solution to all these concerns has been developed in the two countries where the opt-out system is working well, Wales and Spain. In Wales, the system came into force in 2015. The law sets out that those who live and die there will be deemed to have given consent for their organs to be used unless they have explicitly said otherwise. Before that change in the law came into effect, a public awareness campaign alone resulted in an increase in the number of organs transplanted from 120 to 160. That was not huge, but it was a definite start. NHS organ donation statistics show an 11.8% increase between 2014-15 and 2016-17 in the number of people in Wales opting to donate their organs. That was the highest increase among England, Wales and Scotland. Although there has not been a notable change since the law came into effect, it is worth remembering that—as we heard earlier—Spain took almost 10 years to increase organ donation rates significantly.
Spain has had a soft opt-out system for 39 years. It is considered to be the world leader in organ donation and currently has the highest organ donation rates in the world. In Spain, consent is presumed in the absence of any known objection by the deceased, but family consent is still sought, as it would be here, we hope. In the immediate aftermath of this change in law, there was only a small increase in the number of organ donations and transplants, but there was a dramatic increase after 1989, when the Spanish Government made a big push to reorganise organ donation, as a result of which there was a medically trained transplant co-ordinator in every hospital by 1999.
It is unlikely that we here in the UK will have an identical opt-out system to Spain’s, but these are just two examples showing how an opt-out system can work and improve the lives of thousands of people waiting for an organ transplant. This also gives us the opportunity to learn from past experiences, to ensure we get it right in this country, which I am sure we all seek to do. I know the Government will be working to ensure that that is what happens, and the Opposition are passionate about world-class health services, but, as the NHS Blood and Transplant service made clear, we
“will never have a world-class donation and transplantation service if more than 4 out of every 10 families say no to donation.”
Some 90% of people surveyed by the British Heart Foundation say they support organ donation, but just 33% of those surveyed are on the NHS organ donor register. It is clear from what we have heard today that more people need to be on the organ donor register, and these difficult conversations must be encouraged, so that more lives can be saved.
During this debate, I went on to my phone and signed up as a full organ donor. Previously, I was a bit squeamish about giving my eyes, but I have been convinced by the arguments. Signing up only took two minutes; it was simple to do, and every Member could be encouraging our constituents to do so, too, by just going on to their phone and registering now, so we can get more donors before this Bill becomes law.
That would be great. Even the most technophobe of us should be able to manage doing that if it takes only two minutes, and maybe there could be one of those clever apps to make it even easier for all the young people to do this.
I have no knowledge of apps, but I do have my donor card here, held proudly in my hand, which I got by telephoning. When I introduced my Bill on this subject many years ago, I was accused, as were the supporters—including Dr Evan Harris, who brought in the Bill with me—of being Aztecs. Does my hon. Friend agree that the tide is now flowing in our favour and this is a piece of legislation whose need has been proven, but whose time is now?
Yes, very good, and I must apologise for not commending my hon. Friend on his Bill when I listed the people who had done work on this over the years. That makes us realise how many people have been pushing for this, and if my hon. Friend the Member for Coventry North West is successful today, his great achievement will be following in many other Members’ footsteps.
Whether it is clever people with their apps or people carrying the old-fashioned donor card, we in the Opposition and nearly all of us, or perhaps all of us unanimously, across the House this morning are in favour of a change to the organ donation law, to ensure that everybody whose life could be saved by organ transplant can have the gift of life. I therefore urge the Minister today to take the necessary steps to increase the number of people on the organ donor register, and I am sure this Bill will be a great asset in helping her to achieve that goal.
I thank Mr Robinson for bringing this Bill to the House; he has secured his fortunate position in the ballot and used it constructively. I am therefore grateful to him and confirm that the Government will give his Bill our wholehearted support. It has been an absolute pleasure to work with him and Dan Jarvis and to get to the place we are in now, having a Bill we can all support. The reason why we are here, in a relatively painless way given our discussions, is that we were all focused on the shared objective of saving lives and securing the availability of more organs for donation. I am extremely grateful to him, and I wish the Bill Godspeed and hope that it gets on to the statute book as soon as possible.
We have heard some moving stories today, and I want to make particular reference to my hon. Friend Peter Heaton-Jones, who talked about the bravery of Keira Ball, who has saved four lives. I shall say a little more about that later. I also want to thank Julie Elliott, who spoke movingly about her daughter. The real thing about this subject is that once we hear the human stories about people who have given organs, consented to their relatives doing so when they have been bereaved, witnessed family members needing an organ or indeed been a live donor, we cannot fail to be touched by their experiences. It is certainly with considerable commitment that I will do my bit to ensure that more organs become available for donation.
I have spoken briefly about my own experience with my son, who was able to get a stem cell donor. We were in hospital for quite some time, and I saw many parents who did not find a donor. That was very difficult, and, to be frank, I felt a degree of guilt because we were fortunate and I knew that I was looking at someone whose child was going to die. That is a heartbreaking situation, and we need to do whatever we can to ensure that more people get on to the register and donate organs.
The hon. Gentleman puts that as well as it could possibly be expressed. That is entirely the motivation behind the Bill. We are losing too many people each year because they need organs, and it would be a poor Health Minister who did not do their best to remedy that. He is absolutely right to describe the very real impact when we see people in that situation. I have been on my own journey with my constituent, who has already been mentioned by Emma Hardy. My constituent painfully lost her daughter, who was waiting for a transplant, and she has used that experience to campaign for this important cause. She has also taken the step of becoming an altruistic donor herself. Who could fail to be inspired by such a story? I am pleased to be able to deliver on the promise that I made to Patricia, when she came to see me for the first time, that I would do everything I could to secure more organ donations. And here we are today, delivering that.
Last October, the Prime Minister pledged her personal support to change the law on organ donation and, in doing so, to help more people across the country to achieve an organ transplant. We should also remember the contribution of Max Johnson, whose struggle was embraced by the nation and who has done so much to highlight this important cause. As a consequence, we in the Government will be referring to this legislation as Max’s law, and we will do everything we can to ensure its passage. In that regard, I am grateful for the Opposition’s support, which will ensure that it has a speedy passage. With such cross-party commitment, we should not fail. As Max, his family and families all over the country who have experienced life on the transplant waiting list know, organ donation is a precious gift, and the family of Keira Ball deserve our special tribute. The fact that she has saved four lives is incredibly inspirational.
I want to echo the tributes that have been paid to the Daily Mirror. We do not often talk about national newspapers in a complimentary way in this House, but the Daily Mirror has done a fantastic job of highlighting this cause. This illustrates what the press can achieve when it puts its mind to something positive. I echo the tribute paid to “Coronation Street” by Mrs Hodgson. Like her, I am pretty addicted to the soaps, and we should not leave out “EastEnders”, which highlighted live liver transplantation last year. She was right to say that the soap operas have also been good at highlighting mental health, but it is particularly apposite that we have seen the organ donation story this week. I commend “Coronation Street” for tweeting a link to the Government consultation in the immediate wake of that programme, which I think is a first. It would be helpful if soap operas highlighted future Government consultations, but I do not think it will be common.
I will be fairly brief in addressing some of the points that have been raised. A number of Members expressed concern about moving from an opt-in system to an opt-out system, and I reassure them that the concept of organ donation being a gift voluntarily given by the donor remains central to the Bill’s principles. There can be no question of the state taking control of organs, which is why the ability to opt out is central to the Bill. Opting out will have to be made extremely easy, and people will have to be able to continually revisit their decision if they wish to change their mind.
It is also central to the Bill that family consent is respected. The circumstance in which someone is able to donate their organs is clearly traumatic and difficult. In considering the whole period at the end of life and the struggle that surgeons are undertaking to save lives, it is important that we are sensitive about that time. We need to be sure that, once someone has lost the capacity to give consent, their family, as next of kin, have their rights protected. I have no doubt that we will explore some of those issues in Committee.
I put on record the representations I have had from the medical establishment, which would feel uncomfortable if consent were not sought from the family. In developing a regime that secures more organs but is also sensitive to everybody’s views, we are able to strike the right balance in the Bill.
I entirely support the Bill. Has the Department given any early thought to public engagement, so that people are aware of any changes coming into force and of what those changes mean?
My hon. Friend will be aware that we are consulting on the principles enshrined in this Bill. That consultation will end on
We have also heard a lot about the high incidence of people from Asian and black backgrounds on the waiting list, and again that is a priority for the Government. Mr Sharma said MPs should show leadership. We are leaders, and it is certainly something that I want to do. I have a large black African community in my constituency that I am engaging with on this issue. With that in mind, I have tasked NHS Blood and Transplant to develop MP toolkits that we can all use to go out into the community to sell the concept of organ donation. As and when those toolkits are available, I hope to have support from many Members in rolling out that communication.
I would like to make progress, so I will take no more interventions.
As I have made clear, we support the Bill and are determined to secure more organs for transplant, because we are concerned that we are losing lives unnecessarily. People have referred to the experience in Wales and whether the learning from that will achieve a material difference. At this stage, it is too early to draw any conclusions about the number of organs that the change in Wales has secured, but we have seen an increase in consent and opting on to the register. Our best estimates are that the change will secure an additional 100 donors a year, which could lead to the saving of 200 extra lives.
I will take no more interventions.
On the basis that we could save 200 lives, we wholeheartedly support the Bill. I look forward to working with all Members to secure Royal Assent.
I do not much like self-congratulation, and moments when the House gets self-congratulatory can be embarrassing, but on this occasion I am delighted to say that we have seen the House at its best. I say that because we have had a debate where not only have high standards of rational argument been deployed, but deep emotions—we all feel them—have not been kept from us. That unique combination today has enabled us to have the cross-party consensus of the size we have achieved, on a Second Reading of a Bill that is, perhaps, contentious in nature in some respects. I note that the Secretary of State for Health has just arrived and so, while plaudits are being awarded, may I just say that his support from the very beginning has given great encouragement to me and to my hon. Friend Dan Jarvis?
This is a great moment for us. I hope that there will not be a Division, but I am sure that if there is one, we will win it. I am sure that we will be able to go out of the Chamber knowing that the Bill has passed its hurdle of Second Reading, that we are going into Committee and that with any fair wind from the Government by the end of the year we will have the Act—Max’s Act, as we should call it—on the statute book. I look forward to that moment and to saying that, at least in this Parliament, we did pass an Act for life, and I am delighted, on that note, to be able to conclude the debate.
Question put and agreed to.
Bill accordingly read a Second time; to stand committed to a Public Bill Committee (