[Ms Karen Buck in the Chair]
I beg to move,
That this House has considered the matter of the introduction of an opt-out system for organ donation in England.
It is a pleasure to serve under your chairship, Ms Buck. I want to begin by sharing with the House my reasons for tabling my debate and by telling the stories of Max Johnson and Joe Dale. Yesterday, I had the privilege of meeting Emma and Harry Johnson—Max Johnson’s mother and brother. Max is nine years old and has cardiomyopathy—a condition that enlarges the heart and can be life-threatening if left untreated. Max is kept alive by a tiny metal pump in his chest, and has been waiting for a heart transplant for six months. He is one of 6,388 people in the UK waiting for an organ donation. Last year, 457 people died while still waiting.
Joe Dale was a constituent of mine. He died last month after a sudden asthma attack, which caused devastating brain damage. He was just 16 years old. After his death, his family made the selfless decision to donate some of his organs so others might have the chance to live. Because of their decision, Joe became one of the hundreds of deceased donors who save and improve lives every year in the UK. I know that right hon. and hon. Members will want to take the opportunity to join with me in passing our condolences to Joe’s family and giving our thanks for their brave determination to help others in spite of their personal tragedy.
The stories of Joe and Max, the work of my hon. Friend the Member for Newport West (Paul Flynn) and the very important Daily Mirror campaign have re-energised my long-held belief that as a country, as politicians and as a legislature we can do more to help those in need of organ transplants.
I will be very brief. My hon. Friend mentioned the Daily Mirror campaign and the private Member’s Bill introduced by my hon. Friend the Member for Newport West (Paul Flynn) and other supporters, which failed due to the prorogation of Parliament and the general election. Luckily, I have position No. 6 in the ballot, and I want to inform my hon. Friend the Member for Barnsley Central (Dan Jarvis)—I compliment him most sincerely on conducting today’s debate—that I intend to reintroduce the Bill pretty much as it stands. I will be presenting it next Wednesday in the House of Commons, and I hope I can count on my hon. Friends’ support. That also applies to the hon. Member for Strangford (Jim Shannon).
I join my hon. Friend in paying tribute to the Daily Mirror, which ran a very important campaign for some time, and thanking it for the work it has done. I also thank him for confirming, I think for the first time, that he intends to use his private Member’s Bill as an opportunity to introduce a legislative mechanism for the Government to change the law in England, should they wish to use it. I hope that will provide a forum where this matter can be further debated constructively in Parliament. I am very grateful to him for taking that decision, and I look forward to supporting his Bill and working with him and, I hope, the Government to make it a great success.
Four hundred and fifty seven unnecessary deaths a year is too many, and I believe it is our duty to reduce that number and save the lives of people such as Max. By changing the law to an opt-out rather than an opt-in system we in Parliament can do that.
The truth is that there is a common misconception about how organ donation works. Only a very small number of people die in a way that allows for organ donation. The vast majority of people on the organ donor register will never actually donate their organs. The figures are startling: about half a million people die every year in the UK, yet last year, out of that half a million, only 5,681 people died in circumstances that made donation possible—about 1%. Although there are hundreds of thousands of people across the country who are registered as potential donors, only a handful will ever be in a situation that allows donation to take place. The reality is that there are simply not enough registered organ donors. People in the UK—specifically in England—are dying as a result.
Accompanying those alarming facts are some more positive recent statistics, as reported in this week’s “Organ Donation and Transplantation Activity Report for 2016-17”. Last year, there was a 4% increase in the number of deceased donors to 1,413—the highest number ever in the UK. Coupled with more than 1,000 living donors, that has resulted in 4,753 life-transforming transplants this year—a 3% rise from last year. The number of patients whose lives were saved or improved by an organ transplant has increased by 3% to 4,753. All that means that more than 50,000 people are alive today thanks to a transplant.
The “Organ Donation and Transplantation Activity Report” is a good news story, but I believe we can make it an even better news story. Behind every statistic there are people, and, as Lorna Mason and Gary Masterson wrote this week in the annual transplant activity report:
“Every transplant is the result of a complex collaboration between donors and their families, a host of clinicians working in different parts of the NHS and finally in transplant recipients and their family.”
They went on to say that
“opportunities for donation continue to be missed...While we cannot quantify every missed opportunity precisely, we need to work collaboratively to make sure that these are as few as possible.”
Despite the excellent campaign run by the NHS to encourage organ donation—details of which can be found at www.organdonation.nhs.uk—the UK still has one of the lowest rates of consent in Europe for organ donation.
The “Taking Organ Transplantation to 2020” strategy, published in 2013, set the target of increasing the donation consent rate from 57% to 80% by 2020, in line with the better-performing countries in the world. That is the rate at which families who are approached by NHS Blood and Transplant actually go on to become donors afterwards. Although the consent rate has increased to 63%, it is still too far below this year’s target of 70% and the 2020 target of 80%. Now is the time for us to do something about that.
I believe that the best way for us to increase the number of lives saved through organ donation is to adopt the so-called opt-out system—sometimes known as a system of deemed consent. Under the current law in England there is an opt-in system of organ donation. In other words, people must proactively state that on their death they would like their organs to be donated to someone else. And yet surveys consistently show that there are many more people who would like their organs to be donated when they die, but they are not registered. Polling conducted by the British Medical Association supports this and has shown that 66% of people in England would donate their organs after death, but only 39% have signed the organ donor register. That means millions of people here in England are willing to donate their organs, but are not registered to do so.
I am sure we all understand that people lead busy lives and that organ donation is not something most people think about on a day-to-day basis, but the reliance of the opt-in system on our not only thinking about it but finding the time to sign up is reducing the number of organs available and the number of lives saved. That is why many other countries use a different system.
Wales has had an opt-out system since December 2015 and only last month the Scottish Government announced plans for a similar system of organ donation in Scotland. In a statement, the Scottish Health Minister said:
“Moving to an opt-out system of organ and tissue donation will be part of the long-term cultural change in attitudes to encourage people to support donation.”
That view is increasingly shared by countries around the world and by many of our European neighbours such as Austria, Belgium and Spain, which all use variations of the opt-out model. It is time that we in England joined them, modelling our system on that in Wales where they offer three clear options: first, to register someone’s wish to be a donor by opting in to the system; secondly, to register their wish not to be a donor by opting out; and thirdly, to have their consent to donation deemed by taking no action.
It was argued when the law was passed that the availability of the three options would increase the number of organs available for donation, and that that in turn would save lives. I am pleased to say that the evidence from Wales suggests that such assertions were correct and that the new law is working. Indeed, the potential pool of organ donors has almost trebled since 2014-15, and the opt-out system does not appear to have deterred individuals from proactively opting in. It is right, of course, that we strike a note of caution with that data, but the initial signs are encouraging.
I now want to address some of the concerns that people have about an opt-out system of donation. This is undoubtedly an emotive issue and there are strong feelings on both sides of the debate. I would not want to question anybody’s motives in deciding whether they wish to be a donor. It is, after all, a deeply personal matter. Under an opt-out system, people would not be required to give a reason for choosing not to be a donor, as the system is not about trying to shame people into becoming donors. Also, similar to what is happening in Wales, any new law would need to be accompanied by an active public awareness campaign: first, to ensure that people understand the new system; secondly, to encourage more people to make the positive decision to become an organ donor; and thirdly, to give people who may want to opt out the information they need to do so.
1 understand that some people have concerns that an opt-out process raises the risk that a person will have their organs taken against their will and against their families’ wishes, which in turn could cause unnecessary distress to the families of the deceased. I also understand that such concerns may be more prevalent within some ethnic and religious groups and that some members of our Muslim and Jewish communities have different interpretations of the religious legitimacy of deceased donation. I completely get that. I understand their views and have the utmost respect and sympathy for them. However, I firmly and wholeheartedly believe that not only do the benefits of an opt-out system far outweigh the risks, but that the risks can be mitigated through a public awareness campaign tailored to different ethnic and religious communities and through the use of in-hospital safeguarding measures. Any new system would have to ensure there were safeguards in place to ensure that no one’s organs were donated against their wishes; that the opt-out system applied only to those over the age of 18; and that for those under 18 it continued to be the case, as it was with my constituent Joe Dale, that the family have the final decision, because it is vital that nobody feels as though they are being coerced.
I also accept that changing the law is not the only change we need to make. It would need to be part of a wider package of measures to increase organ donation. We need to redouble our commitment to the “Taking Organ Transplantation to 2020” goal of increasing the consent rate to 80%, and to consider carefully whether the strategy needs strengthening in the light of the progress so far.
The evidence from Wales and from countries across Europe gives us the confidence to say that an opt-out system would be an important step forward. For that reason, I very much hope that we can proceed on a cross-party basis. I respect anyone who takes a different view on an issue of conscience such as this, but it is clear that the principle of deemed consent has support from Members of all parties across the House.
The Health Secretary recently told the House that an opt-out system has “a lot of merit”. Only yesterday at Prime Minister’s questions, the First Secretary of State told me that
“organ donation is clearly a hugely important part of our system, and the Department of Health is looking at the impact of those changes to see if those can give rise to further improvements in the number of available organs.”—[Official Report, 12 July 2017; Vol. 627, c. 290.]
I welcome such statements because I know that an opt-out system has merit. When the Parliamentary Under-Secretary of Health, the hon Member for Thurrock (Jackie Doyle-Price), winds up the debate, will she tell us what work is taking place in her Department and when it will report?
Before I conclude, I want to take a moment to say how much my hon. Friend the Member for Sunderland Central (Julie Elliott) wanted to be here today. About a year ago, her daughter, Rebecca, a fit young marathon-running mother of one, had blood tests that indicated kidney failure. Three weeks ago she had surgery at the Freeman Hospital in Newcastle to enable her to start dialysis. Today, she joins the 6,000 other people on a waiting list for an organ donation. The average wait for a kidney on the transplant list is two years. I know that all hon. Members will want to join me in wishing Julie, Rebecca and their entire family all the very best. Also, I want to take this opportunity to thank charities such as Kidney Care UK for their work. Because of these stories we should move forward as quickly as possible; children such as Max and mothers such as Rebecca do not have the luxury of time to wait. Anything that we can do to help them get a new organ is a step worth taking so that they can join the thousands of people in our country who have benefited from organ donation.
We have a duty of care to those in our society who need help, and that includes those who need transplants. We can and must do more to help them. We cannot save the 457 lives lost last year, but who knows how many we could save in future? As an old friend once told me, “The best time to plant a tree was 20 years ago. The second best time is now.” I very much hope that the Government will act.
It is a pleasure to serve under your chairmanship, Ms Buck. I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on securing the debate and on his sensitive and compassionate tone; I hope I can reciprocate. I agree with the hon. Gentleman that it is imperative to work to increase the number of organs available for donation, because every week people in this country die because there is a shortage of available organs. The critical question that we must ask today is whether presumed consent would help with that.
Presumed consent certainly seems an attractive proposition, but perhaps I may enter a note of caution, to aid our early deliberations on the matter. One of the key legal principles I was taught as a student lawyer was that silence is no reply, which means that, much as we might like to draw conclusions from silence, there are good reasons why it may be inappropriate to do so. Introducing the principle of presumed or deemed consent would involve a major change with respect to organ donation. It would effectively mean that even if someone did nothing at all—did not sign an organ donor register, or opt out or in—a consequence would be triggered. The person’s silence would trigger a quite major action. Their organs could later be taken and transplanted. Consent would be deemed, although they would have done nothing.
Of course, some people, on seeing the publicity that might surround the introduction of presumed consent, would deliberately and knowingly decide to do nothing, aware of the consequence; they would be comfortable with that. Those people would be aware that they had, in doing nothing, effectively chosen to donate. However, there would inevitably be a significant group of people who missed the publicity altogether. We need to be sensitive to that.
Informed consent is an important principle, undergirding the relationship between the citizen and the state, so it is right that the House should explore the issue carefully, which is why I welcome the debate. It is critical to explore whether, for example, it is right in this instance to undermine the principle of informed consent by introducing presumed consent. Is it possible that that could create a precedent that might be appealed to in future for less enlightened purposes?
Some practical concerns were highlighted during the debates in Wales that preceded the legislation there, some of which I did not feel were satisfactorily resolved at the time. When the Welsh Government made the case for introducing presumed consent, they based their case, at least in part, on a piece of research by two academics, Abadie and Gay:
“Evidence...suggests that introducing an opt-out type system could result in a 25 to 30 per cent increase in deceased organ donation rates which could equate to a further 15 donors each year in Wales, each of whom...on average might donate 3 organs. This means around 45 more organs could become available to the UK pool for transplantation.”
I understand that the research compared practices in other jurisdictions, and classified Spain, the country with the highest donation rate in the world, as a presumed consent country. Spain introduced presumed consent legislation in 1979, but the law has never been implemented; Spain is still in practice an informed consent jurisdiction like England. Indeed, rates of donation there started to increase only when, 10 years later, Spain made other changes, in particular investment in the organ donation infrastructure. It increased the capacity, training and availability of medical staff to talk to families about donating the organs of a loved one when a life has tragically been cut short.
A leading expert in the field, Professor John Fabre, unsuccessfully tried to point out to the Welsh Government their misconception. In an article entitled “Presumed consent for organ donation” in the journal Clinical Medicine, he referred to their explanatory memorandum, published in December 2012, to the Bill that became the Human Transplantation (Wales) Act 2013. It stated:
“For example, an opt-out system is operated in Spain and it has the highest donation rate in the world.”
As I have said, Spain, even today, does not operate an opt-out system, so I believe that that statement was incorrect, even though it was cited in official papers in Wales, underpinning the presumed consent legislation. The recognition that the country with the highest donation rate in the world does not in fact operate a presumed consent system is important in any assessment of the efficacy of presumed consent. It is also striking that some of the countries that are least successful with their organ donation rates, including Sweden, Greece and Bulgaria, operate presumed consent.
A second objection raised during the debate in Wales was the fact that in some countries the introduction of presumed consent has been associated with significant numbers of people withdrawing from donation. Some people interpret the introduction of presumed consent, despite its noble motivation, as the state seeking to claim their organs without proper consent. Rather than seeing it as a mechanism for donation, they see it as a mechanism for bypassing consent to donation. There has been some evidence of that in Wales. Giving oral evidence to the Health and Social Care Committee of the National Assembly for Wales, organ transplant specialist Dr Peter Matthews, who was based in Morriston Hospital in Swansea, said:
“My own experience is that the British psyche has a particular view that what it should do is donate organs as an altruistic gift, and if it is felt that the state is going to take over the organs, then there is the potential that people who may have been willing to become a donor will not do so. We have seen two cases in Morriston where patients who were on the organ donation register, on hearing about this, said to their families that if the state was going to take their organs, they were no longer willing to give them. We lost two donations”.
During the debate on the Bill in Wales, three Assembly Members relayed similar stories from constituents.
I want to comment on the impact of presumed consent in Wales. NHS Blood and Transplant records donations on a yearly basis, from April to April, and the first full year of results that we have from Wales is for 2016-17. The data tell us two important things: first, in 2016-17, 61 deceased donors facilitated 135 organ donations. Far from representing the anticipated increase of 15 donors and 45 organs, that apparently constituted a decline by three donors and 33 organ donations from the previous year’s figures. That might come as something of a surprise, because some people have suggested that the system was a great success. However, under informed consent a family can donate the organs of a deceased person if the deceased has signed neither the organ donation register nor the opt-out register, which means that, as we have heard, in Wales prior to December 2015 the families or living representatives of the deceased could—as they can here—decide to donate their loved one’s organs. But under presumed consent those informed consent donations would be reclassified as presumed consent donations. Critically, that does not mean that those donations would not have happened under the old system.
Secondly, and not surprisingly, bearing in mind what Dr Matthews told the Assembly, there has been a huge increase in the number of people in Wales opting out. In 2016-17, 174,886 people in Wales were on the opt-out register. That figure far outstrips comparable figures for other parts of the UK, where consent is not presumed. Only 27,559 individuals in England, 1,834 in Scotland and 204 in Northern Ireland have opted out. That means that a staggering 85.5% of individuals in the UK who have opted out live in Wales, despite the population of Wales representing only 4.8% of the UK population.
I have cited a lot of figures, but I do so to get them on the record and to aid our debate. To appreciate fully the cost of the change in Wales, we must remember that prior to the introduction of presumed consent, people who had signed neither the opt-out register nor the opt-in register were potential donors.
My concern is to demonstrate that we have to look very carefully at some of the evidence that the Welsh Government used to come to their conclusions.
Where someone has signed the opt-out register, conversations cannot even begin. That means that more than 174,000 of the Welsh population have effectively been removed as potential donors. Previously, in the absence of express direction to do otherwise, those people’s families, as their living representatives, might have been happy to donate their loved ones’ organs at their death. When Wales embraced presumed consent, the other UK jurisdictions said that they would wait to review the results in Wales before deciding whether they wanted to go down that path. I ask the Minister to look at the evidence.
We have significantly increased donation levels in England since implementing the recommendations of the organ donation taskforce in 2008, which of course came down very much against presumed consent. Rather than seeking to emulate Wales, England should perhaps seek to emulate Spain and put its emphasis on lowering the family refusal rate by increasing the number of clinicians who are trained and available to discuss this issue with families when the need arises—often at short notice.
Professor Fabre concluded his seminal paper in Clinical Medicine in the following terms:
“Rather than legislating for the consent of donors, we should be addressing the misgivings and misunderstandings of families so that they decline donation much less frequently, as has been done so successfully in Spain. An acceptance rate of 85% is a realistic and achievable objective for the UK over a 5-year period. As previously, we have the Spanish model to guide us. It will not be easy. It will require…a detailed plan at the national level”.
I very much hope that the Minister will consider all those points and confirm that the Government will take into account every possible consideration and concern about this issue before any legislation is introduced. I look forward to her response.
I warmly congratulate my hon. Friend the Member for Barnsley Central (Dan Jarvis) on securing this debate and on the clarity and comprehensiveness of his speech. He covered the ground in commendable fashion and hit the significant factors involved.
The hon. Member for Congleton (Fiona Bruce) rehashed the debate in Wales. She mainly addressed opinions and fears that were expressed before the change was made in Wales. I am sure that those fears were sincere, but they have not been realised in the way that she suggests. It is not important that the Welsh Government might not have had entirely accurate evidence; evidence rarely is entirely reliable, and there may have been misunderstandings. What is crucial is the outcome, which is impressive. At least 40 lives were saved—at least 40 people are alive today who would not have been had the presumed consent Bill not passed. As my hon. Friend said, the figure for lives lost in England is 457. That is an extraordinary number of people. If there were an accident today in which that number of lives was lost, that would be our main concern.
My interest in this issue began in 2012, when my 22-year-old constituent Matthew Lammas came here to lobby me and my hon. Friend the Member for Newport East (Jessica Morden). That young man was in need of a heart transplant. He had a heartbreaking story of so many false alarms. He would get a call at perhaps 2 o’clock in the morning to drive to Middlesbrough or Birmingham, but halfway up he would get another call to say, “Sorry; somebody else got the heart—someone got here before you.” Six months after he visited me here, I attended his funeral. A 22-year-old man’s life was lost. I am absolutely convinced that, had we taken the bold decision to introduce presumed consent in Wales six years ago, we would be in a far better position and Matthew Lammas’s life would not have been lost in that way. Those are the simple facts.
There have been extraordinary changes in Wales since the passage of the presumed consent Bill. No one in Wales has died for lack of an organ since that system came into effect. In 2015-16, 214 organ transplants were carried out and 192 patients were on the organ donation waiting list. There was a great deal of concern in Wales, and we all understand that; we all know the feeling of wanting to treat the bodies of our loved ones with reverence and care. There is something that upsets us profoundly about the idea of organ transplantation. There are also genuine religious objections, which were played out again and again in Wales. But I come back to my point: look at the outcome.
There has also been a huge change in public opinion in Wales. In 2014-15, 48.5% of the people of Wales had consented to donating their organs. The figure leapt to 64% in two years. Public opinion has come around to this. We must congratulate the Daily Mirror, which demonstrated tabloid journalism at its very best. I am not sure that this sells many papers, but it has, for all the best reasons, boldly sought to ensure that this life-saving measure is introduced. We can now have great optimism, because my hon. Friend the Member for Coventry North West (Mr Robinson), who came sixth in the private Member’s Bill ballot, announced that he will take this issue up, and there is every chance that the spirit of this Parliament will take it forward.
We rejoiced this week when a decision was taken about the long-standing injustice of contaminated blood. We have come to a consensus about that, and the Government have shown themselves willing to move forward and introduce valuable reform. When I introduced my Organ Donation (Deemed Consent) Bill in the last Parliament, my contact with the Government was entirely friendly. They were reasonable; they were cautious in reaching conclusions but made it clear that the door was open for reform soon. We can change that figure of 457 avoidable deaths. We must move rapidly and find consensus among all parties to take the clear and unambiguous lesson from Wales that presumed organ donation consent saves lives.
It is a pleasure to speak in this debate. I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on presenting what I thought was a passionate, honest and fair contribution. This is a matter I am also interested in and seriously believe in. I will say early on that I subscribe to the opinion put forward by the hon. Gentleman, because I feel that is the way things should be. That is a personal opinion. All of us here obviously agree that organ donation is important, but we might look at it in different ways.
I am not interested in this only because of my role as the DUP’s health spokesperson; I also have a personal interest relating to family members. The hon. Gentleman gave the example of one of his constituents. My nephew Peter was born with a kidney the size of a peanut, which is probably fairly hard for people to comprehend. From the day he was born to the day he had the transplant, he was on dialysis treatment, which, once someone has started, they cannot come off. I am very aware of the issue, and I will make an honest, personal contribution to the debate.
Someone in this world donated that kidney to Peter, who is alive today because of it. The alternatives were looked at by the family, and everyone looked at it in the way that they thought best. His mother was going to give her kidney, but then she became pregnant, so that opportunity fell away. In the meantime, someone else came forward with a kidney donation, which Peter had. Peter is the same age as my second boy, so I can quite honestly relate to the difference between the two boys as they grew up. I understand the importance of organ donation, and believe that people certainly should be on the register.
I was on the Organ Donation Northern Ireland website just before we came here, and the first sentence I read really impacted upon me:
“Most people would accept an organ if they needed one.”
That is not really surprising, is it? Yet only 40% of us in Northern Ireland have signed the NHS organ donor register. We would all want an organ donation if we needed it, but we have not all signed up. I have to ask the question honestly, sincerely and fairly to those here: if that is the issue, would they not donate their organ? I know that I would.
I carry a wee organ donation card, although it does not make any difference. It is long faded because it has been in my wallet—they say that the money in that wallet is like a prisoner, but that is by the by. I signed up for the card when I was 18, although that is no longer necessary, because when people sign up for their driving licence and tick that box, they are registered forever. That is how we do it in Northern Ireland. The card is very faded, but it says:
“I would like to help someone to live after my death”.
That is its purpose.
I was returned for Strangford with 42% of the vote in 2015, and this year—I thank the people of Strangford for this—I was returned with 62%. I have to tell hon. Members that it is a much better position to be in this time around than in 2015. It is a lot more safe and secure, but how much more so for those who need donations as a matter of life or death? Last year, 12 people died in Northern Ireland while waiting for an organ transplant. That may not seem a huge number, but speak to those 12 families and hear exactly what it means to them. Every one of us in the Chamber— those in the Gallery and hon. Members who are contributing—will know exactly what it means. It is a phenomenal loss.
The sad fact is that some people who passed away in that same year may well have wanted their lives to make a difference by donating their organs, but because their families did not know, it did not happen. It is about raising awareness, having the debate today and every one of us searching our souls and consciences for how to respond. It is really important that we do so; it is a conscious decision that everyone should consider. I completely believe that this is a matter of conscience. In fairness, the hon. Member for Barnsley Central said that in his contribution. He recognises that it is a matter of conscience, and I heard that in what others said as well.
I will look down on no one who feels that, due to a religious belief or some other belief, they cannot donate their organs. That is freedom of belief in action and the conscience clause is important, but what I cannot understand is someone who simply refuses to consider or discuss the possibility. I agree with the Welsh example: I believe that people should be on the list unless they opt out. We have to up the ante and move forward constructively.
I mentioned the case of my nephew. There is another case that I always remember. There was a gentleman in Newtownards whose son was injured in a car accident. Unfortunately, he was on life support and was going to die. His dad told me that his son, by his death and donation, was able to save six lives. In Newtownards we also have a very active group of people who are donation recipients. The council at that time—it was called Ards Council then; it is now Ards and North Down Borough Council—had made a remembrance garden, which we had an opening ceremony for. Many people in not only my constituency but across the whole of the United Kingdom of Great Britain and Northern Ireland understand exactly what this means.
The last time I spoke about organ donation in this Chamber, I said that 30% of people in the UK were registered to donate. That figure is now 36%. That is great, but it is still not enough. That is why we have to do something and look seriously and honestly at what is being proposed today. Registered donor numbers have increased every year since 2012 and are 20% higher than five years ago, yet three people a day are still dying needing a transplant. Is that right? No, it is not. We have to do something about that. The figure could be lower if people were prepared to think or talk to loved ones about it.
I see so many driving licence forms in my office. It is not for me to judge, and I will not—I never judge anybody on donation—but on too many of those driving licence forms people have not ticked the box to say that they want to be a donor. I do not know why they have not done it. It is up to them to make their own mind up, but when our time comes to pass on from this side of the world, we can help someone. If I can help someone with this old, fragile, diabetes 2 body standing here, why should I not? It is time that people understood the importance of this decision.
I am conscious that other Members want to speak, so I will not ramble on too much longer, but I want to make a wee comment about Wales. We are all aware that in Wales, where they have had so-called deemed consent since December 2015, only 6% of the population has chosen to opt out, which speaks volumes. More importantly, in that one year in Wales, as the hon. Member for Newport West (Paul Flynn) said, 39 organs were transplanted through deemed consent out of a total of 160 transplants. That 39 out of 160 was a significant contribution to saving lives. Why should we not do that? I cannot get my head around it at all.
I will finish with this, because you are giving me the eye, Ms Buck, so I need to be careful. I urge people to be aware of the decision and the impact that it can have on families. We must take more positive steps to see a better take-up of organ donation, while always ensuring that people can make the choice themselves. I am conscious of the conscience clause. The simple fact is this: we can save lives in our deaths. Let us encourage people to do this in a manner that is sensitive and yet makes clear the case that we would nearly all take an organ if we needed one—would we not?—and should therefore all be willing to give one.
It is a pleasure to see you in the Chair, Ms Buck. I want to start by congratulating my hon. Friend the Member for Barnsley Central (Dan Jarvis) on not just securing this debate but taking the opportunity to raise this incredibly important issue at Prime Minister’s questions yesterday.
I am pleased to hear that my hon. Friend the Member for Coventry North West (Mr Robinson) will be introducing his presumed consent private Member’s Bill when he gets his opportunity on a Friday. I hope we will not see a repeat of the usual filibustering, which means we cannot have a proper debate and do not get the opportunity to vote on the Bill. It is really important that the House finally gets the chance to express its view on this matter, and that will not happen if the Bill is simply talked out.
I want to reiterate the concern that has been expressed about our not being on target to achieve an 80% consent rate for donation after death by 2019-20. We have missed the strategy’s interim targets every single year. More needs to be done to make a difference and to save lives. We have a moral obligation to do something, which in this case means introducing presumed consent. It is neither perfect nor a panacea for all the issues surrounding organ donation but, as we heard from my hon. Friend the Member for Barnsley Central and others who spoke in the debate, it would make significant difference.
A constituent contacted me today about her severely disabled son. She is concerned that he lacks capacity to opt out and she is worried that in the medical profession’s view some lives may be worth less than others. It is important to give people such as my constituent the reassurance they need, and that is not just about the right to opt out. As we have seen in Wales, where there is a soft opt-out procedure, families still get consulted. It is important to put people’s minds at rest.
Across Bristol, there are more than 182,000 people on the register, with more than 38,000 in my constituency. In March, 27 people in the city were on the active transplant list, 13 of whom were in my constituency. Last year, there were 10 deceased donors and 22 deceased donor transplants. At the moment, we are not quite keeping up with demand.
Cystic fibrosis is a subject dear to my heart, not least because my 12-year-old niece, Maisie, has it. It is a life-limiting illness that affects 10,800 people in the UK and most of them will need a lung transplant to extend their life and improve their quality of life. I want to take the opportunity, slightly gratuitously, to pay tribute to Maisie’s 14-year-old brother, Isaac, and her 17-year-old sister, Lilli, who did a 65 km—40 mile—walk across the Peak district the weekend before last to raise a few thousand pounds for the Cystic Fibrosis Trust. It was quite a trek.
The trust does brilliant work to raise funds and to support the families of people with cystic fibrosis, most of whom will need a lung transplant at some point. About 50 cystic fibrosis patients receive a transplant each year. It is the third most common reason for lung transplantation. Such patients have the best outcome, with 60% of recipients living at least five years after donation.
At any time, about 60 people with cystic fibrosis are on the transplant waiting list. Patients on the list are generally not expected to live more than a couple of years if they do not receive a transplant. One in three will die before they can receive one, so you will understand, Ms Buck, why it is important to me that we up the donation rate and make sure that lungs are available whenever possible.
The Cystic Fibrosis Trust does not see opt out as the only answer. I am sure the Minister knows that it has been calling for a national allocation system so that there is less of a postcode lottery and it is not just people who are fortunate enough to be in a place where lungs are available for transplant who get them. Last month, NHS Blood and Transplant announced that it would move from a regional system to a fairer national allocation system for urgent cases. The Cystic Fibrosis Trust has, of course, welcomed that.
Organ donation is complicated. It is not just a case of finding available lungs and a donor who wants them. According to the Cystic Fibrosis Trust, 75% of clinically usable donor lungs are not used. It wants more training for doctors because only three doctors in the UK can downsize lungs to make them suitable for smaller patients. It is often teenagers and people in their early 20s who have poor lung capacity and need new, downsized lungs. Will the Minister consider training more people to ensure lungs can be used?
Repairing sub-optimal lungs to make them suitable for transplant is also an issue. Spain has the highest organ donation rate in the world not just because of its opt-out system but because it has medically trained transplant co-ordinators, uses intensive care beds better and more frequently, has different admission criteria for its intensive care units and uses more high-risk donors.
I appreciate that we are talking specifically about presumed consent, but I want to ensure the Minister is aware of all the wider issues. I hope she will work on those as well as supporting the opt-out Bill.
I am delighted to be having this debate, and I congratulate the hon. Member for Barnsley Central (Dan Jarvis) on securing it. He told us the moving stories of Max and Joe, bringing a human aspect to the debate. He underlined that deaths are preventable, but that although 66% of people in England would donate, only 39% are on the donor register. Combined with the knowledge that only a small number of people on the register of donors will be able to donate, that highlights the fact that there is clearly a lot of work to be done.
The hon. Member for Congleton (Fiona Bruce) added a few notes of caution, with the view of aiding an informed debate. There are always at least two sides to a debate, and being informed does us no harm. Unfortunately, she is no longer in her seat to hear me say so; to me, hanging on for an entire debate is important.
The hon. Member for Newport West (Paul Flynn), speaking in his own inimitable style and even summing up the debate for me at one stage, told the story of Matthew, a 22-year-old man who unfortunately lost his life, and the feeling that had a system been in place back then, an operation could have been available and his life might have been saved. The hon. Gentleman also urged England to follow Wales’s lead by implementing a soft opt-out scheme.
The hon. Member for Strangford (Jim Shannon) spoke about his nephew Peter, who required a kidney and fortunately got one, and is alive today due to that donation. Not everyone in Northern Ireland has been as fortunate. He also highlighted that one donor can save multiple lives.
The hon. Member for Bristol East (Kerry McCarthy) spoke about missed targets, saying that no plan is perfect, which reminded me of the Churchill quote:
“Perfection is the enemy of progress.”
She also spoke passionately about the needs of those with cystic fibrosis.
There were a few false starts, but now that the Welsh Government’s soft opt-out is up and running, the Scottish Government have announced plans to do the same thing. An independent evaluation of the implementation of the Welsh opt-out system is due to be published in December 2017, and we believe that the numbers will be encouraging, but if even one donor has been identified, it must be worth it. The British Medical Association has stated that it believes that, over time, an opt-out scheme promotes more positive social attitudes to donations, so it may well be that we will not see the benefits for a few years to come.
I believe that the most important people in this debate are the many waiting for a donor—those whose lives are poorer or even on the line as they wait, and wait. This is not solely about saving lives; it is about improving them. One donation does not simply save or improve one life; it has a knock-on effect. My colleague Iain Fraser would not have been born if his father Sandy had not received a kidney many years ago. I thank Sandy Fraser for his ongoing commitment and work in his capacity as the chairman of the Scottish Kidney Federation.
I ask Members: if they had a loved one, as many of us do, whose life could be transformed by receiving an organ donation, would they not turn over every single stone and investigate every possibility in order to identify a donor? I hope that is what we are about to do. In my view, a soft opt-out scheme is the path to go down, but whatever comes of this debate, it must stimulate discussion. We should all make our wishes known to our friends and family. When my time comes, as it will, please take whatever you want.
It is an honour to serve under your chairmanship, Ms Buck. I thank my hon. Friend the Member for Barnsley Central (Dan Jarvis) for securing this debate, his excellent contribution and all the work that he has done in recent weeks to raise awareness of the need for more people to become organ donors. I commend other hon. Members for their thoughtful contributions to this debate; the Daily Mirror for raising awareness of organ donation since the case of Max Johnson, a nine-year-old boy in need of a new heart; and the more than 9,000 people who signed the Change.org petition.
I also pay my respects to other hon. Members who have brought this issue to our attention over the last decade or so. They include my hon. Friend the Member for Mitcham and Morden (Siobhain McDonagh), who introduced a private Member’s Bill on this topic back in 2004, and my hon. Friend the Member for Newport West (Paul Flynn), who introduced a private Member’s Bill more recently and who spoke so well today.
I will quickly set the scene on organ donation in the wider sense and then move on to the situation in countries such as Wales and Spain, in which opt-out systems have been introduced. Finally, I will talk about three tests that Opposition Members would like the Government to look at, if such a system were implemented in England, to ensure that patients, NHS staff and community groups could have confidence in such a change in the law.
There is no doubt about the need for more organ donors in England. We have heard about that so clearly today. With so many people on the waiting list for new organs, it is important that we get more people signing up to donate their organs so that we can ensure that more people have the chance to live. That is why it is welcome that in a written answer last year, the then Public Health Minister, Nicola Blackwood, confirmed that since 2008 organ donation across the UK had increased by 68% and transplants by 47%, and that 2015-16 saw the highest ever deceased donor rate in the UK, with 1,364 deceased donors resulting in 3,529 transplants.
However, as we have heard, there is still a lot more to do because, tragically, 1,000 people every year die while waiting for a transplant. As we heard from my hon. Friend the Member for Barnsley Central, 6,388 people in Britain need a transplant. That includes 183 children. It also includes Rebecca, the adult daughter of my hon. Friend and constituency neighbour the Member for Sunderland Central (Julie Elliott). I send my hon. Friend, Rebecca and all her wider family my best wishes, as I am sure we all do.
Like the hon. Member for Strangford (Jim Shannon) and, I am sure, others here today, I am a card-carrying organ donor. As soon as I became old enough to carry a card, I did, and that was also because of a direct family experience of someone requiring organ donation. My Aunty Ella was one of the pioneers of organ donation when she received a kidney transplant at the fantastic Freeman Hospital in Newcastle. That was about 50 years ago. I have just looked this up: the first organ donations at the Freeman were in 1967, so my Aunty Ella was literally one of the first. She had a very young family at the time. I was born in ’66, but I can remember being told that all she wanted was to live long enough to see her children grow up. Well, she saw her children grow up, get married and go on to give her grandchildren. That is what organ donation is all about: it gives people a future.
There are issues, though, when it comes to black and minority ethnic communities. NHS Blood and Transplant reported that 66% of people from BME communities in the UK refuse to donate their organs, despite being more likely to need a new organ because of a predisposition to certain illnesses, such as diabetes and hypertension. I will cover that issue when I come to the three tests that we would need to set. It is why it is welcome that we have had an opportunity today to debate this issue and everything that comes with it and to think about how we go about improving organ donation, alongside considering what my hon. Friend the Member for Barnsley Central set out on the principle of an opt-out system.
Currently, we know of two countries in which opt-out organ donation systems work: Wales, which we heard quite a bit about today, and Spain. As we heard, Scotland is also considering how it can introduce an opt-out scheme. In Wales, the system was brought in via the Human Transplantation (Wales) Act 2013, which came into force in 2015. The new law sets out that those who live and die in Wales will be deemed to have given consent for their organs to be used unless they have explicitly said otherwise—that is the opt-out.
According to the Organ Donation Wales website, a public awareness campaign before the change in the law came into effect resulted in the numbers of organs transplanted increasing from 120 to 160. NHS organ donation statistics have shown an 11.8% increase between 2014-15 and 2016-17 in people in Wales opting in to donate their organs—the highest increase among England, Wales and Scotland. However, a written answer from the Minister present today, based on NHS Blood and Transplant figures, stated that
“there has been no notable change in Welsh deceased donation figures since the change in legislation”.
This is backed up by NHS organ donation statistics, which show that despite the opt-out system in Wales, there were more deceased organ donors in England and Scotland. That could be because the system is still in its early days; people who have not opted out are still alive and have not yet been able to donate their organs.
Further afield, our friends in Spain have had a soft opt-out system since 1979, in which consent is presumed in the absence of any known objection by the deceased, but family consent is still sought. The implementation of that system led to a small increase in organ donation and transplant, 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. However, as a 2012 British Medical Association report stated, there are likely to be differences between the UK and Spain’s performance on organ donation because of their different approaches to resources and clinical practices. For example, Spain has a higher number of intensive care beds, different ICU admissions criteria and end-of-life practices, and the use of higher-risk donors in comparison with those used here.
Nevertheless, those two examples give us food for thought on the change in organ donation rules in England. They show that if we implement this policy, we need to get it right. It is important that we learn from what has already happened, adapting and using what we learn from other countries to get it right in this country. I hope the Minister and her officials will be busy doing that after the debate.
Labour will set three tests for the Government if any new organ donation system is introduced in England. First, they must obviously ensure full public awareness of any change in the organ donation rules. Secondly, they must ensure that medical and healthcare professionals are involved in designing any changes to the system and that they have the support to raise awareness among the public. Thirdly, they must promise to work closely with community groups to ensure that cultural and religious views are fully consulted on and taken into account before any change is introduced. Those three tests are based on work done in other countries, notably Spain and Wales, but also on the current situation across the UK, where there have been documented issues with engaging with BME communities on organ donation.
Organ donation and transplantation is a sensitive issue, as we have heard in this debate. Many people have strong and differing opinions on it, and it is crucial that the Government ensure that all voices are listened to so that we can come up with a solution. These real problems must be addressed. We know of many people who are on transplant waiting lists for far too long. Sometimes people die because they have been on the waiting list for years without a match to save their lives. We need considered action by the Minister and the Government. They must look at the issue carefully, consult with the public, ensure that solutions are found and bring about the improvements needed. I trust that the Minister will endeavour to do just that.
It is a pleasure to serve under your chairmanship, Ms Buck. I thank all Members who have participated in this debate. Organ donation has been such an established practice in the NHS for quite some years that we often forget about it. The way that everyone has brought the subject to life today, with references to their own stories and experiences, has reminded all of us how important it is. Perhaps it is time this subject had some renewed focus, if only to raise awareness and encourage people to opt in, whether or not we ultimately introduce an opt-out system.
I pay tribute to the hon. Member for Barnsley Central (Dan Jarvis). He could not have done a better service to his constituents Joe Dale and Max Johnson in the way he expressed his argument with considerable persuasion. Perhaps through him, I could send my good wishes to Joe Dale’s family. I hope they get some comfort from the fact that Joe lives on by giving life to others. As we know, one organ donor can save or transform up to nine lives. What better legacy can we have than for other people to live on? We, as Members of Parliament, could perhaps be more proactive in giving that message, as we breathe life into this much neglected subject.
I am told that we last considered organ donation on the Floor of the House in 2014. This opportunity to discuss it is very welcome, and we will have many more opportunities, given the confirmation from the hon. Member for Coventry North West (Mr Robinson) that he will use his private Member’s Bill to push this issue forward. I am sure it will get a good airing.
The hon. Member for Washington and Sunderland West (Mrs Hodgson) presented tests at the end of her speech for what we should bear in mind when deciding what to do in this space. I think we should do all those things, in any case, as we talk about kidney donation. The key has to be public awareness and ensuring that medical professionals do their bit to encourage people to participate in organ donation. We must also engage with community groups where there is a specific problem. That is my biggest priority.
I want to say a bit more about the context. Obviously, we want to encourage as many people as possible to make clear their intention to donate after death and to have that conversation with their families. That is often where the decision is made. Medical professionals need the requisite training to have these sensitive conversations.
As the hon. Member for Barnsley Central mentioned, not many people understand the system of organ donation. We can all sign up to be on the donor register, but not all of us will be in a position for our organs to be used. Quite often, organs can be used after an unexpected and traumatic death, and it is very difficult for any medical professional to have a conversation with the family about what should happen to the deceased’s organs. We need to have a lot more understanding and be a lot more willing to make it clear to our loved ones that we would want our organs to be donated if we were ever unfortunately in that position.
I must pay tribute to all those in the national health service who work in this area. Their determination and commitment makes donation and transplantation possible. Although we still need more transplants, we have seen a significant increase in donations in the UK. We saw 1,413 donors giving 3,712 transplants in the last year, which illustrates how many lives can be saved by one successful approach to donation.
It is incredible that, as NHS Blood and Transplant told us only this week, more than 50,000 people are now alive thanks to organ donation and transplantation. The first transplants took place in my lifetime, and they were seen as revolutionary. One reason we have not given this subject as much attention is that donations now tend to be seen as commonplace.
There is much to celebrate, but there is also much more to do, not least because 457 people died last year while on the active transplant waiting list. That ignores the 875 people who were removed from the list because they had become too ill to receive a transplant. Many of those will have died shortly afterwards. At any one time some 6,500 people are on the waiting list, and again, although waiting times are declining, we cannot be complacent. We need to make sure that those people have hope that, when they are on the list, they have a realistic chance of receiving a transplant.
Our biggest challenge is black, Asian and minority ethnic donors, for two reasons. First, black and Asian people are more at risk of illnesses that may require a transplant, such as high blood pressure and diabetes, and secondly, the consent rate for those communities is half that of the white population. The same is true for blood, so we need many more blood donors from the black community. There is a constant need for that because of the prevalence of sickle cell anaemia, but we know that only 1% of the nation’s blood donors are black. So we need to do much more not only in organ donation but in blood donation.
There is some encouraging news. Last year, more than 6.4% of all deceased donors were from black and Asian communities. That is a significant increase, so the direction of travel is positive, but we need to do much more. Average waiting times for kidney transplants have fallen for everyone, and that rise in donations from black and Asian communities has meant that the biggest fall in waiting times is for black and Asian patients—down from four years to two and a half over the past seven years. The direction of travel is good, but we need to do more, because people from black and Asian communities still wait at least six months longer than white patients. That problem needs to be tackled, because recipients are matched according to blood and tissue types, which differ across ethnic groups.
As we set out in our manifesto, we are determined to target that audience, and we welcome the involvement of all hon. Members in that. We are looking at other partner agencies, and we are working with the National Black, Asian and Minority Ethnic Transplant Alliance. However, many other groups need to be engaged, not least to tackle misplaced cultural concerns about donation. It is not incompatible with Christian beliefs to bequeath one’s organs, and we need to make sure that that message gets out loud and clear by engaging with all community leaders in this space.
We have heard some persuasive arguments on opt-outs and why we should move towards an opt-out system, and I certainly understand the thinking behind that proposal. To add my personal experience of this, my constituent Patricia Carroll regularly lobbies me on the subject. Her daughter Natalie suffered from anorexia and diabetes, and died awaiting a kidney and pancreas transplant. Patricia tried to donate her own kidney to Natalie but was not a match. Following Natalie’s death, she decided to become a live donor. Last year—I think it was around Christmas—she gave a kidney to a 22-year-old young man called Joe who had been on dialysis for three or four years.
What Patricia has done for that family—it is the family, not just the individual—has transformed their lives. I again pay tribute to all live donors. That is an incredibly altruistic thing to do when recognising the impact it can have on the donor’s own health. It is amazing, particularly when there are donors who have absolutely no personal relationship with the beneficiary of their organ. Patricia will be watching with interest to see what I have to say about this.
There are obvious attractions to opt-outs as a tool; anything that will increase the pool of available organs will obviously be attractive. However, opt-outs on their own are not a panacea, and the references to what we can learn from Spain are significant. The issue is about what is wrapped around that. Specifically, it is not just about public understanding and public awareness of why we need donation and what it means, but about how the medical profession deals with it.
The crucial point that affects donation is the conversation in the room between medical professionals and bereaved families. We have seen examples of families refusing consent because they are not convinced that their relatives wanted to donate and it feels safer to say no. Equally, we have seen that being overruled. We find that the highest rates of donation are achieved when we have specially trained nurses who have that conversation with the family in a sensitive way. When such conversations take place, rates of donation go up significantly. Those conversations are critical. If we look at the experience of Spain, we see that that injection of medical advice achieved the step change in donation rates, over and above having an opt-out system.
None the less, we are interested to see the experience in Wales. We are certainly prepared to consider that, and obviously we need to consider it sooner than we might have intended, given the private Member’s Bill, but opt-out will never be a silver bullet to achieve more donation. We are committed to ensuring that we do whatever we can to increase donation. Our strategy, “Taking Organ Transplantation to 2020”, contained the ambitious targets that the hon. Member for Barnsley Central mentioned. Although we have not actually achieved the 70% that we are aiming for, the direction of travel is positive. The fact that more than 23.5 million people have opted in to donate their organs is quite an achievement, although I am not complacent. To give credit where credit is due, the NHS and everybody involved have achieved a great deal in achieving those figures.
The key thing is the availability of specialist nurses. We must ensure that organ donation is embedded as a normal consideration of end-of-life care, where that is available. We have looked at developing a new organ donor register that makes it easier for people to opt in. We are trying to make available as many opportunities as possible for people to do that, for example when people sign up for a new driving licence. In any interaction with Government, we need to give people that option, because where it is a positive choice, it is more likely to be effective.
We all agree about the need to raise awareness on the mainland and across the whole United Kingdom of Great Britain and Northern Ireland. When it comes to raising awareness—I presume the Minister will do so imminently—will she engage with the Northern Ireland Assembly, provided that it is still going, and with Scotland and Wales to ensure that we have a UK-wide programme of awareness to get people on the register?
The hon. Gentleman makes an excellent point. He might have seen that I am wearing a pin, which is a nice pink heart that says, “Yes”. That campaign is being run by NHSBT to highlight the need for people to offer to be a donor. If people are prepared to do it, they should wear this nice pin. We need to use any number of the tools at our disposal, and we need to be a lot more imaginative about the ones we use. I look forward to seeing him with his nice pink heart.
I should conclude my remarks to allow the hon. Member for Barnsley Central an opportunity to respond to the debate. I think that we are all united in the outcome we are trying to achieve, which is to encourage more people to be willing to donate their organs to achieve more transplants. With regard to the tools we employ to achieve that, we will look at opt-out and consider whether that would do anything, but in the meantime we are prioritising engagement with black and minority ethnic communities. We will continue to invest in specialised nursing to have those very sensitive conversations, because they need to happen. We will look at what more we can do to encourage more families to be willing to give consent at the time it needs to be given. I thank everyone for contributing to the debate.
This has been a constructive and useful debate, and I am grateful that we have had contributions from Northern Ireland, Wales, Scotland and England. The reality, as the Minister said, is that this is a serious, sensitive and complex subject, but ultimately it is about saving lives.
It was a great privilege to meet Max Johnson’s mother yesterday, and I pay tribute to the Johnson family for their stoicism and the fact that they are prepared to talk about their experiences. Speaking as a parent, I can only imagine how difficult it must be for them. Today, Max Johnson sits in hospital in Newcastle, waiting and urgently hoping that an organ donation will be made available to him.
As I said in my opening remarks, we all have a responsibility to do everything we can. We have a duty of care to people more generally, and that particularly includes those who require some form of donation. We can learn a lot from what is happening across Europe and in Wales. I am delighted that there are moves afoot to move to a similar system in Scotland.
I was obviously very pleased to hear that my hon. Friend the Member for Coventry North West (Mr Robinson) will be introducing a private Member’s Bill, which will have its First Reading next week and its Second Reading at some point in the autumn. That provides a valuable opportunity for us in this House to have a further discussion.
As the Minister again rightly said, there is no silver bullet solution. If the Government were to be persuaded that moving to an opt-out system was the right thing to do, that would have to be accompanied by a range of other measures, not least further publicity to raise awareness so that, collectively, we can all encourage people to sign up and be organ donors.
I am not prone to making predictions, but I will say, in conclusion, that I think that at some point we will move to an opt-out system in England. It is my strong belief and hope that we do that sooner rather than later, because I am confident that to do so would save countless lives.
Question put and agreed to.
That this House has considered the matter of the introduction of an opt-out system for organ donation in England.