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Andrew Griffiths (Burton) (Con)
It is a great pleasure to serve under your chairmanship, Mr Hollobone. I look forward to your advice throughout this important debate, and I am also grateful to hon. Members for joining me for it today.
I think it was Daniel Defoe who in 1726 said that the only certainties in life are death and taxes. That is true. These are issues that none of us really wants to talk about, but unfortunately, death touches us all. All of us in the Chamber and anyone watching will no doubt have been touched by the loss of a loved one. Many of us will have lost parents. Some will have lost a partner or a child, a son or a daughter. Those are terrible things to cope with—the sense of loss, and the pain and anguish that come with that terrible event.
The idea that, at such a sad and low time, when people’s world collapses, they should have the forethought, integrity and generosity to make the decision to give the organs of their loved one to support the lives of others is a very difficult thing for us all to contemplate, and we would all struggle with that question when asked. However, I have also spoken to people who have done exactly that: they have given the organs of their loved one for the use of others, to give life to others, and they tell me of the incredible meaning that it gives to the traumatic loss of a loved one. It puts that loss into context. In the words of one parent who spoke to me, their son will always live on. That is a tremendous thing for anybody to contemplate.
However, the reality is that in Britain today, some 7,000 people are currently on the waiting list for an organ transplant—right now, they are at home, ill, waiting for the phone to ring, waiting for the hospital to call, waiting for the chance of a new life. It is hard to put ourselves in their situation, but their lives depend on that phone call and on that organ being made available. The figures show that 1,300 of the people on the list will die. They will become too sick to receive a transplant. That is unacceptable, and it is what I hope we can address in today’s debate.
Last year, 1,323 people became organ donors, compared with 1,164 the previous year. That is good news; it is an increase of 13.7%. Transplants from those donors have risen by a third to more than 3,000. Currently, just under a third of the population of the UK are on the organ donation register. On 12 June this year, it was more than 20 million people—20 million people who have sat down and made the choice that after their death they would like to give life to others. I commend them for that choice and I hope that, by raising the issue today, we can encourage more to do the same.
I congratulate both this Government and the previous Government on the successes that have been achieved over recent years. There is a good news story to tell on organ donation. We saw a 50% rise in donor numbers by 2013 on the previous five years. Thanks to the implementation of the recommendations published by the organ donation taskforce in 2008 under the previous Government, transplants from those donors have jumped by a third. However, there is much that we can do, and much more that we must do if we are to give as many of those 7,000 people as we can the opportunity of life.
The numbers on the registers are still too low—pitifully low. As I mentioned earlier, just under a third of the people in the UK are now registered. In the UK, we have 13 donors per 1 million people, which is still one of the lowest rates in Europe. Compare us, for instance, with Spain, which has an opt-in system, rather than an opt-out system. There, the figure is 35 per 1 million people, which is almost three times as high.
So why are people in the UK not signing up? All the evidence shows—the surveys show—that 96% of the population support the principle of organ donation, yet only 30% of the population register, so what has happened to the remaining 66% or so? The rate of sign-up to the register varies dramatically across the UK. The highest sign-up rate to the register is, of course, in Scotland, where 41% of the population is a registered organ donor. I commend them north of the border, but why is it that in England and Wales, those signed up are only 30% and 31% respectively? Why is the figure so much higher north of the border?
I have been told that some of that is attributable to a simple, but hard-hitting television advertising campaign, encouraging people to sign up as a donor, and more importantly, to discuss their decision with their loved ones. The advert is very simple. A man in front of a camera suggests that people watching tell those they are with about their wishes for organ donation—“Right there, right now, look at everybody in the room and tell them. Make sure that your wishes are clear.” It is a hard-hitting advert, which is clear and effective.
I believe that we should have a simple, hard-hitting campaign just like that in England and Wales, and I push the Minister on it. I have previously written to the Secretary of State for Health encouraging him to do exactly that, and I urge the Minister to look again. Perhaps she could tell us whether she has any thoughts on an advertising campaign, because we all recognise that education, and talking about those things and raising awareness are key.
Education is a key way of encouraging people to sign up, and our schools also have a part to play. The “Give and Let Live” resource pack has been used in schools since 2007. It helps teachers to introduce 14 to 16-year-olds to the concept of organ donation, but it is not compulsory on the national curriculum. I am not suggesting that it should be; I recognise that we have to give head teachers the autonomy to make those decisions and to decide what is taught in personal, social, health and economic education lessons. However, raising awareness about the campaign and encouraging teachers to use the resource will encourage young people not only to sign up and get on the organ donor register, but to talk to their parents about it. That is also important. If we can get this conversation going on around the breakfast table between children and their parents, we will have much more chance of not only getting more people to sign up, but getting people to accept the wishes of their loved ones when that difficult question and difficult moment arises.
The use of the Driver and Vehicle Licensing Agency has also been incredibly successful in encouraging people to become organ donors. People are asked when they apply for a driving licence whether they also wish to join the organ donation register. It has been fantastic; over half a million people sign up every year as a result of that simple question, which takes seconds to answer.
I pay tribute to the Cabinet Office’s behavioural insights team—or “the nudge team”, as the press like to call it. They have done a study of this issue. It is a very interesting piece of work about the most effective way to frame the question to encourage people to sign up. Through a pilot that they ran, they found that just a slight change in the wording could lead to an additional 96,000 sign-ups every year. It is incredible how the human mind works and how it is affected by the questions that are asked. It is important that the Government think logically in that way to encourage people to do the right thing.
Of course, there is another important element to this. It is important not just to get people on the register. Also important is what happens once they are on the register and, sadly, in a position to become an organ donor. It is important that we convert people on the register into donors. We must increase the consent rates among the families. UK donation consent rates remain among the lowest in Europe. Four out of 10 families said no to a deceased relative’s organs being donated even when they were on the register. There has been no overall improvement in the consent rate since the organ donation register was introduced in 1994. How to deal with that is, for me, an important question.
It is interesting that as a person—I hope that the Minister would agree—of sound mind and body, I can decide to donate my organs after my death, yet my family can take that decision away from me and I have no choice about that. We do not do that in any other walk of life. We do not say that I can sign my will, saying that I am going to donate all my money to the Conservative party to secure Conservative elections in years to come, and that my family can then override that will, unless they can prove that for some reason I was not of sound mind and body. We must empower people to make the decision for themselves. Yes, it is important that they discuss it with their family, with their loved ones, but we must recognise that, as a free individual, I have the right to choose to donate my organs and no one should be allowed to take that right away from me. I would be interested to know whether the Minister has any thoughts on that.
The aim of the NHS Blood and Transplant strategy, “Taking Organ Transplantation to 2020”, published last year, is to increase the UK’s consent rate for donations from 58.6% to 80%. That is a very big jump. It is an ambitious target, and I hope that we can meet it. In contrast, Spain has the highest consent rate in Europe, at 84%. Last year, the consent rate in the UK increased by only 2%, from 56.5% the year before.
There is a startling difference between what happens when donation has been openly discussed with family members beforehand and what happens when the decision comes as a shock or surprise. In 2013, 94% of families in the UK agreed to an organ donation when their loved one was registered and had discussed their wishes with them. That fell away to 80% when they were on the register but had not discussed that with their family, but most worryingly it fell to 43.5% when the person’s wishes were not known at all. That clearly demonstrates the need not only to get people on the register, but to ensure that people talk about that when they are. We must ensure, under the system as it stands at the moment, that it is not a solitary decision. If we do not encourage people to let their families know about their decision, unfortunately their wishes, their intentions, the good that they wish to do will be denied.
Of the 20 million people in the UK who have put themselves on the organ donation register, only 60% have told their families that they have done so. We can do the maths: the wishes of 40% of the people who have the potential to give new life to another human being are being denied simply because they did not tell their wife, their husband or their partner what they wanted to happen after their death.
In 2012-13, 115 families overruled their relative’s consent for their organs to be used. I understand why they did that. I understand the pressure, the grief, the pain that those people are going through, but we cannot allow a situation in which those 115 deaths were for nothing. Those 115 deaths, with the conversion rate for organ donation, could have given more than 300 people a fresh lease of life. That is what we must focus on.
The UK will never achieve its potential for donation and transplantation when more than 40% of families refuse to allow donation, sometimes against the wishes of the patient. Obviously, when anyone has lost a loved one, it is a difficult and emotional time, but if the deceased had expressed a clear wish to donate their organs, it seems odd that the family can overrule that. That is why I urge the Minister to think about changing the law so that we can make a choice for ourselves to do the right thing and donate our organs.
The Welsh Government, as the Minister will know, are seeking to deal with the issue. From December 2015, they are introducing an opt-out system of presumed consent unless a deceased person had expressed a wish not to donate their organs. A similar system has produced incredible results in Spain. I recognise that this is a hugely controversial issue. It has been characterised as a case of “Who owns your organs?” I recognise that there are deep and heartfelt reasons why people would oppose such a system. I am also aware that previously the Under-Secretary of State for Health, my hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter), said that the Government had no plans to introduce it elsewhere in the UK, because of those cultural, ethical and legal issues.
Glyn Davies (Montgomeryshire) (Con)
I thank my hon. Friend for allowing me to intervene; I hope that later I will catch your eye, Mr Hollobone, and can make a contribution. This is the first point on which I completely disagree with my hon. Friend. Does he accept that there is no evidence whatever that changing to an opt-out system, even in Spain, which I will deal with in my speech, has delivered more organs? To consider it an ethical issue—the Opposition and many of us base our view on the efficacy of such a change, rather than on the ethical position—is, I think, a mistake.
Andrew Griffiths
I thank my hon. Friend for that intervention. Perhaps he is just a little presumptuous. I was not intending to argue for the opt-out system. All I was going to urge the Minister to do was to look at these issues on the evidence. What I suggest is not that we should come forward with a similar proposal for England and Wales, but that we should follow the evidence. We should look closely at how the system is implemented in Wales and at its impact. My hon. Friend has said that he will talk about the situation in Spain. In Spain, there was a delay before there was an increase in the number of donor organs available, but all the evidence seems to suggest that the system has led to a big increase.
Not only is the debate important, but it raises awareness of organ donation. It gets people talking; it stimulates discussion, which is important. My hon. Friend will know that the principle of the opt-out system is supported by a number of organisations, including the British Medical Association, the British Heart Foundation and Kidney Research UK. As I said, I hope that the Government will look closely at the evidence—at the results of changing the law in Wales—and look to reconsider their position as the evidence develops. My hon. Friend may well be right that there will be no marked increase in the number of organs available for donation, but we do have to follow the evidence, look at the results and decide what we do in the rest of the UK as a consequence.
There was a call by those involved in organ donation committees in our hospitals to look at the issue of the lack of family consent overriding the wishes of the deceased.
David Simpson (Upper Bann) (DUP)
I congratulate the hon. Gentleman on obtaining this debate on what can be a very controversial issue. Does he agree that we should exhaust every possible avenue, whether it be schools or the driving licence organisation or whatever, before we even look at going down the road of an opt-out system, because it is a very controversial issue? In Northern Ireland, 527,000 people—32%—are on the register. The figure is increasing every month. A consultation is ongoing. I understand that in October a consultation will also be carried out on an opt-out system. I think that we need to exhaust every other avenue and then have further debate on that issue.
Andrew Griffiths
I agree with the hon. Gentleman; he talks a great deal of sense. The issue is very sensitive and we do not want a backlash in the form of people deliberately coming off the organ register because of ethical and moral concerns. I agree that there is more that we can do. I congratulate the Government on what they have achieved so far, but we can do a great deal more. The issue is important not only because lives are at stake, but because it has a massive impact on NHS costs, which I hope to touch on towards the end of my speech. I completely agree with the hon. Gentleman.
I want to address organ donation in the black and minority ethnic community. I am the Member of Parliament for Burton, which has a large Muslim population—mainly Pakistani and Kashmiri diaspora—who contribute massively to the community. However, there is no doubt that there is a problem with organ donation among BME communities. There is particular concern about the lack of donors coming forward from BME backgrounds. The startling truth is that people from BME backgrounds are up to three times more likely to need an organ but are less likely to donate; they need it more, but they donate less. Only 3.6% of people on the organ donation register are from ethnic minority backgrounds, despite their making up 10.8% of the population and a staggering 27% of the waiting list. Those figures show how skewed the numbers are and how desperate it is that we do something about the issue.
More than 30% of people listed for a kidney transplant are BME, compared with just 5.6% of deceased kidney donors in 2013. Why is that important? NHS blood and transplant statistics show that, on average, people from black and Asian backgrounds have to wait a year longer for a kidney transplant: between 2006 and 2010, the median waiting time for a kidney transplant in the UK for a white person was two years and 363 days, yet for a black or Asian person the wait was three years and 320 days. That is a whole year longer, just because of someone’s ethnicity. Family refusal rates among ethnic minority backgrounds also play a big part. The Minister will know that those rates are much higher than for the population as a whole, with 30% of BME families giving their consent to organ donation, compared with 68.5% of the white population—more than twice as many. That is why it is so important that we tackle the issue of organ donation among the BME community.
Ethnicity is hugely important in organ donation because a person is much more likely to find a match with someone from a similar ethnicity. It is vital that we do more to encourage people from BME backgrounds to sign up to the organ donation register. That is not the only answer; it is also vital that we break down the cultural barriers that prevent BME families from consenting. I commend the Government on the NHS blood and transplant team’s faith and organ donation summit in May last year. It was a good event, and it was agreed that sustained engagement on organ donation by and in ethnic minority communities is needed.
Those are all good words, but I am not seeing them reflected in my community. I am not seeing organ donation being discussed in churches, mosques and community centres. I am not seeing our imams and priests talking to their communities and encouraging them to come forward and donate—to do the right thing by signing up to the organ donation register. None of the major religions object in principle to organ donations, but of course opinions in communities differ. Organ donation is often not discussed, or is called, for example, un-Islamic. We must address such things if we are to break down prejudice and save lives in BME communities as a result. Leaflets have been distributed among different faith communities to that effect, but I hope the Minister will agree that much more can be done.
One way to increase donation that has been advocated is through the use of specialist nurses in organ donation—there is a wonderful acronym: SN-ODs—who were introduced following the 2008 recommendations. We now have 250 SN-ODs, who are there to support people going through the organ donation process and to raise awareness of donating. The National Black, Asian and Minority Ethnic Transplant Alliance is calling for more SN-ODs to come from ethnic minority backgrounds, and I agree with it on that. I am not sure whether the Minister is aware that of those 250 SN-ODs throughout the country, just one is from a BME background. Is it any wonder that we are failing to break down cultural barriers at that terrible moment of loss, when we have only one person from a BME background to engage with people who are suffering such loss, and to encourage them to give life to others?
The proposed action plan arising from the summit in May last year featured a number of criteria on increasing engagement with ethnic minority communities. The aim was to fulfil them before September this year, and other criteria by a year hence. I would be grateful if the Minister would give us a little more information about what she and the Department are doing regarding those important criteria.
I know that other Members wish to speak, so I will soon draw my remarks to a close, but I want first to touch on a few points. First, I called for this debate at the request of William Saunders, the chairman of the organ transplant committee at Queen’s hospital in my constituency. It is fantastic to see William and his team, like others throughout the country, engaging as members of the community to try to encourage others to do the right thing and sign up to the organ transplant register. I hope that the Minister agrees that such people are doing a fantastic job in our community and that more must be done.
I also called for this debate because of a constituent, Katherine Sinfield, who sadly was diagnosed with leukaemia. My local newspaper, the Burton Mail, has done a huge amount to highlight Katherine’s case and to encourage people to come forward and undergo stem cell testing in order to find her a match. I am delighted to say that she has now found a match and had her treatment. We all wish her well, and she is doing incredibly well.
Through the Burton Mail’s campaign, I have seen the difference that raising awareness can make. The work of the Burton Mail and the Anthony Nolan trust has resulted in a large increase in the number of Burton residents who have come forward to be tested and who want to do their bit. It has also raised a huge amount of money for the Anthony Nolan trust. If we can encourage similar activity across the country—if Members will raise the issue in their constituencies—we can all play our part in raising awareness.
In conclusion, with such a high level of support for organ donation among the general public—96%—it is surprising that there is such difficulty in finding enough donors to meet the demand for transplants. It is clear that more work must be done. Despite these times of constrained public spending—we all recognise the difficulties in which the Government find themselves—I believe we can do more to solve this problem. Indeed, the “Taking Organ Transplantation to 2020” strategy says clearly that
“no additional funding is likely to be needed to move forward: much of what needs to be done is about working differently rather than increasing resources.”
I am sure that that is music to the Treasury’s ear, but I know that the Minister will put her shoulder to the wheel and help.
Without meaning to put it in crude terms, transplants save the NHS money in the long term. The entire transplant programme saves the NHS £316 million a year, which is money that would otherwise be spent on treatment. A successful kidney transplant operation, for example, costs £17,000, with a future cost of some £5,000 a year. A year’s dialysis for a patient with kidney failure, on the other hand, costs £30,800. The NHS blood and transplant service predicts that, for every year a kidney transplant remains functional, it saves the NHS £24,100 per patient while saving the patient’s life. If ever there was a win-win, that is it. From a financial perspective, it makes perfect sense to want to increase the number of organ donations if they can deliver such savings for the NHS, but more importantly, from a personal perspective, if any of us or one of our loved ones needed a transplant, we would do everything possible to ensure that we found a donor. We would move heaven and earth to give our loved one that chance.
I join the call of the organ donation committee at Queen’s hospital in my constituency and others across the country in saying that more needs to be done to increase the number of people on the organ donation register. Sign up; it saves lives.
Jim Shannon (Strangford) (DUP)
I congratulate the hon. Member for Burton (Andrew Griffiths) on securing this debate. Without doubt, this is an important issue. In his brief speech, he outlined the importance of organ donation to us all.
Some of us come to this debate with personal knowledge, and other Members with a very personal understanding will speak shortly, too. I will speak not only about cold facts but as a first-hand witness who was emotionally involved with a family member in need of an organ donation. Twenty-three years ago, my nephew, Peter, was born with one kidney that was not working and another that was the size of a peanut—I think that is how the doctor described it. That clearly inhibited my nephew’s quality of life. For many years, until he received an organ donation, he was unable to have the quality of life that everyone in this Chamber today is privileged to have.
My second son and my nephew were born at about the same time, so I was always able to compare their quality of life—my son, who was perfectly healthy, and my nephew, who unfortunately was not healthy as he awaited a kidney transplant. My nephew was restricted in height and in energy, and he was always a yellowy colour. That is hard for a family, but it is much more bearable when they know that kidneys are available in the organ bank ready to be transplanted. Peter was able to get that transplant, and it literally saved his life. That underlines the importance of organ donation to every member of my family and my family circle.
I do not want any parent or family member to be dealt the blow of knowing that a relative is in need of a transplant but there are currently no organs available. I do not want anyone to experience that, but that is what is happening in the UK today. That is why I feel so passionately about this debate. It will come as no surprise that I, as a Member of Parliament and as an individual, am a registered organ donor. Registering as an organ donor is much easier in Northern Ireland because whenever we apply for or renew our driving licence, we tick a box on the form to show whether we want to be an organ donor. Those who say yes will automatically become an organ donor should their time in this world come to a tragic end.
In Newtownards in my constituency of Strangford, a garden has been constructed for people who are having dialysis and renal treatment at the Ulster hospital in Dundonald. It was felt that we needed a garden in which people could have tranquillity and peace, and to thank people who had donated their organs over the years. The council and local representatives were both involved. Rather poetically, perhaps, just two miles from that garden, a young man—I knew his father well—died some years ago. After being injured in an accident, his organs were donated to save other lives, which shows that there is an opportunity to save lives. As the hon. Gentleman said in his introduction, we can give an opportunity to those who have not had the quality of life that we have but could have it with an organ donation.
Despite all of our medical advances, some 1,000 people die each year in the United Kingdom waiting for an organ transplant, which is shocking. We desperately and urgently need to increase sign-ups to the organ donation register. With that harrowing statistic before us, what can we do, and what do the Government intend to do, to increase sign-ups? I am pleased that the Minister is in her place. I have asked her questions on this previously, and some of the answers are in the Library debate pack. There have been positive responses from the Government, and I have no doubt that we will get such a response at the end of this debate, too. We seek to add further contributions and evidence to the debate, and perhaps the Minister will be able to respond.
It is pleasing to read that, in the past five years, the number of people in the United Kingdom of Great Britain and Northern Ireland who donate organs after death has increased by 50%. That is good news and it matches a target set by the Department of Health’s organ donation taskforce in 2008. I suppose we are asking how we can do more. How can we make organ donation more appealing or more real to people?
David Simpson
We heard earlier that some 7,000 or 8,000 people are waiting for an organ transplant. Does my hon. Friend agree that, if we could dramatically increase the number of organ donors, a knock-on effect might be that it would end organ farming and the sale of organs on the black market?
Jim Shannon
That is a pertinent issue. I understand that organ farming is not the Minister’s responsibility, but we are aware of parts of the world where people are given a great deal of money to donate an organ for use elsewhere in the world. That is a travesty and an injustice for poor people who find themselves in financial difficulties and see this as a way out. My hon. Friend is right that that needs to be seriously addressed.
NHS figures show that there were almost 4,700 organ transplants in 2013-14, which is an amazing figure compared with 3,717 organ transplants in 2009. That is an increase of almost 1,000, which is a clear indication that Government policy is starting to take effect, with the general public’s co-operation. That is good news. It is about how we go over fences to get a wee bit extra and do more.
We must not praise ourselves too much, however, and settle for the progress that we have made. There is still a long way to go. NHS statistics show that on 31 March 2014, as my hon. Friend said, 7,026 people were on the transplant waiting list. Although that number has been decreasing for the past five years, it is still much too high. The Government must do more to cut those waiting lists dramatically. What new targets have been set by the organ donation taskforce, and how does it intend to raise the public’s awareness of the great importance of this issue?
During May and June 2013, Optimisa Research conducted market research on behalf of the NHS blood and transplant service to measure public awareness, attitudes and behaviour towards organ donation. The findings of that research highlight how much work the Government have to do to increase sign-ups. We must all energetically encourage those around us to sign up, but the Government need to lead, too. Some 54% of those questioned had not seen any recent publicity about organ donation. What is being done to highlight organ donation? The hon. Member for Burton referred to that, too. It is clear that, as a result of poor publicity, organ donation is not currently in the public consciousness as it should be. What steps have the Government taken to improve that and change the perception that organ donation is the exception rather than the norm?
Of those people questioned, 31% would consider donating some or all of their organs, but are yet to be fully convinced. Again, that indicates that there is a swathe of people who are susceptible to persuasion, which could lead us to the next stage for organ donation. Why are the Government not engaging with those people as they should? The research also found that the key personal barriers to donating include mistrust of medical professionals and discomfort in thinking about death. Death is a subject that we sometimes do not want to think about, but it is one that we must all consider. There is no better way of setting the scene than Mark Twain’s comment that the only two things in life we are sure of are death and taxes. Death is an issue for us all, and we must consider it.
It shows that the public are not sufficiently well informed. If the Government better presented information on organ donation, it stands to reason that the barriers preventing people from signing up would ultimately be removed, the number of people on transplant waiting lists would fall dramatically, the number of transplants would increase and, most importantly, the number of people in the UK who die while waiting for a transplant would fall significantly. We must consider that issue as well. We see so many stories in the press and on TV about those who are desperately waiting for a transplant and have a very short time between life and death. Every effort must be made to ensure that we can save the British lives of those whom we represent. Why is more not being done?
It is clear from the research that public awareness must be raised, and it therefore follows that the Government should focus on that, but there are also other means of increasing sign-ups. Although opinions are mixed on the issue of express or presumed consent, I would like to present my personal view. I encourage the Government to consider legislating for a soft system of presumed consent. Although some might disagree, I believe that such a system is right because it gives life. Perhaps the best time to ask a relative to consider organ donation is not when somebody is lying on their deathbed. Emotions take over. I am not saying that they should not; I am just saying that it is a reality of life, and we must address it. Personally, I believe in a soft system of presumed consent that allows relatives of the deceased to object to donation if the deceased died without expressly electing whether to donate their organs. Such a system is in place in Belgium, where the family’s prerogative is a legally defined right. I suggest to the Minister that we should at least consider it, debate the issue and put it at the centre of the organ donation debate.
Introducing a system of presumed consent would greatly boost the number of organs available for transplant. A 2006 study by Abadie and Gay found that countries with a presumed consent system had 25% to 30% higher donation rates than those with an opt-in system, which is a significant difference. If taken on board in the United Kingdom, such a system would cut the number of those waiting for a transplant and save lives.
I have asked the Minister what she is doing to encourage more older people to become kidney donors. She responded that there is no barrier preventing elderly people from being organ donors if their organs are healthy. It is not out of the question for those with a few more years on the clock to consider organ donation as well.
In my home province of Northern Ireland, only 32% of the population are registered organ donors, the lowest percentage of any area in the United Kingdom. That is unacceptable. Our devolved Assembly is currently processing a private Member’s Bill to increase awareness of organ donation, which proposes to provide people with an opportunity to sign up for organ donation when applying for a driver’s licence. The question will allow people to answer yes or no—they can make up their own minds—but it will be compulsory to answer; the question cannot be ignored. I am fully behind the Bill, as I feel that it will greatly boost the number of people who sign up for the organ donor register. How do the Government intend to work alongside Mr Poots, the Minister with responsibility for devolved health matters, to increase much-needed awareness in Northern Ireland? It is clear that a UK-wide strategy is the most effective way of dealing with the matter. The Minister will know that I often say here in Westminster Hall and in debates in the Chamber that it is important that the United Kingdom regions learn together and bring together all our knowledge so that we can present it.
Time has passed by, but my final point is to highlight the fact that research has found that if organ transplantation rates could be increased by 50% across the UK, the NHS would save money. The hon. Member for Burton mentioned a saving of more than £300 million. The figures depend on who is on the list, but the saving to the NHS would be significant. That cannot be ignored or denied. If we had that in place, it would help the Minister and this Government to manage their health budget better. In essence, if the Government save more lives through organ donation, they will have more money to spend on saving the lives of others. The Government and we as Members must not rest on our laurels and be happy with the progress made. The Government must take steps to ensure that the public are fully aware of the issue, and to save more lives.
Glyn Davies (Montgomeryshire) (Con)
Thank you, Mr Hollobone, for calling me to speak in this important debate on an issue that has featured strongly in my life. I congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing the debate, and on the reasoned and comprehensive way in which he presented his case. I apologise to him and to you, Mr Hollobone; I did not notice that this debate was taking place until about five minutes before it started, so I have not prepared. I apologise if my comments are in any way disjointed.
Donating an organ is just about the greatest gift that anybody can make. It is great to do so on death, but it is perhaps even greater in life, such as when people donate kidneys altruistically. I know several people who have done so, and it is one of the greatest things that one can do. This is a particularly good day to discuss organ donation; the night before last, we watched Erik Compton, who has had two heart transplants, come second in the US Open golf championship. It demonstrates how a transplant can not only give life but allow the recipient to live a life that is completely full and to do the most amazing things. Coming second in the US Open is a pretty amazing thing to have done.
My own interest started with a woman I knew, Trudy, who was a constituent, although I was not the MP then. She had one of the first heart and lung transplants at Papworth. She was a most amazing person. Together, we worked to deliver kidney dialysis in Montgomeryshire, where there was none. A unit has now been approved and built, and is delivering a terrific service. Trudy died a couple of years ago, but the dialysis unit stands as a monument to the fantastic woman that she was.
I am a trustee of the Kidney Wales Foundation. One of my disappointments is that I disagree with the foundation—I am the only trustee who takes this view. I disagree completely with what the Welsh Government have done in changing the law to introduce presumed consent. I have always been a bit disappointed by that. The aim of every trustee—me and all the others, although we disagree—is to increase the number of organ donations and the number of organs available. I have always been driven by the evidence. I have never been influenced by the ethical debates; I am influenced only by where the evidence takes me in terms of how to deliver the most organs. I firmly believe that what the Welsh Government have done will absolutely not deliver more organs, despite what they say.
The only time I ever feel resentful in this sensitive debate is when, as has so often happened on the numerous times when I have been invited to speak about this issue in the media, somebody in desperate need of a new organ is interviewed and I am then asked why I want to prevent them from having an organ. I am utterly appalled by the media’s lack of objectivity and the lack of reference to evidence when dealing with the issue.
We need to move forward as best we can and I want to focus on policy for the future. I will make some specific points. We must look at what happened in Spain. Spain has been referred to in this debate on several occasions and it is a huge success story. However, it is often incorrectly referred to as a country that introduced an opt-out system. That claim is absolutely false, even if the Welsh Government used it as part of the basis for their argument. Despite people writing to them—I have written to them—to tell them that that claim is false, it is still what they base their consultation on. It was a disgrace to conduct a consultation on those terms.
What happened in Spain was that opt-out legislation was introduced in 1979. Twelve months later, it was pretty well abandoned. It remains on the books, but like a lot of laws it has never been implemented. Ten years later the Spanish Government realised that the legislation was not working and they introduced a series of other changes. I believe that it is those changes that we should concentrate on if we are to make a difference.
We should also learn from the organ donation taskforce, which my hon. Friend referred to several times. It did a terrific job under its great chair, Elizabeth Buggins, who is one of the most expert people on this issue. The taskforce considered the issue for two or three years. Everyone assumed that the taskforce would recommend a change to presumed consent. However, when it produced a report, all its members had changed their minds because they had looked at the evidence. The person who has taken over from me in Montgomeryshire believed that changing to presumed consent was a way forward. I said, “Look at the evidence.” As soon as she studied that evidence, she changed her mind.
There are things we should do and that we should learn.
Andrew Griffiths
I thank my hon. Friend not only for attending the debate, but for making such an important and heartfelt contribution; I think that we all value that. I understand what he is saying about the opt-in system versus the opt-out system and the need to follow the evidence. However, does he agree that ultimately organ donation should be my choice? It should be the individual’s choice as to whether their organs are used for donation after they die, and nobody else’s choice.
Glyn Davies
I thank my hon. Friend for that intervention, because that is a perfectly reasonable position to take. I do not know what the figures are—I do not know how often this situation happens—but I want to know them. I am interested in them because the situation seems wrong.
I accept the point that has been made, but the one counterpoint is that sometimes people can change their minds even though they are carrying an organ donor card. However, if people have joined a campaign, we should assume that that is their view. I would be surprised if there are many instances where a family would overrule an individual’s decision; it would be interesting if the Minister could give us the figures to show how often that happens. If it is a major issue, we should address it; I agree with that point.
The first issue that we must deal with is the specialist nurses for organ donation. That is what made a huge difference in Spain, and it is the area where we really need to concentrate. That is what has made the big difference here. Since the organ donation taskforce reported, the number of donations has increased by 50%, which was the target. That is good news, but it is the specialist nurses who have made the difference.
I spent some time talking to the specialist nurse in Shropshire and indeed he has agreed to visit local schools and to organise discussions and debates. We can use specialist nurses to help people to understand this debate, because it is such a sensitive time to talk to people. Talking to people when the person who perhaps they love most looks as if they are alive, because their bodies are still breathing, even though they are brain-dead, and saying that that person’s support system should be switched off and their organs taken is a hugely traumatic experience. We need trained nurses who have the skills to communicate with people in those difficult circumstances. It is the specialist nurses for organ donation who can do that.
Andrew Griffiths
Four out of 10 families refuse consent when they are asked to give it.
Glyn Davies
I think that that is a repetition of the previous intervention. However, the point is interesting and I would like the Minister to give us the figures to show to what extent that situation actually happens, and whether a specialist nurse in organ donation was involved in individual cases.
The second thing that is crucial, particularly in Wales, is the number of intensive care beds. A lot of people assume that an organ can be donated when there is a road accident or when somebody is suddenly killed in another way, but there can only be a donation when the person is in an intensive care bed and there is the facility to take a donation. We have a shortage of intensive care beds. The number of such beds in Spain is huge. It is much higher than the number in the UK, and in Wales the number is particularly low. That is the sector where the investment needs to go to ensure that there are intensive care beds. I know that in the last year there have been cases in Wales of organs that were available for donation but they were simply not used because there was not an intensive care bed to allow the donation to happen.
The final point I want to make is, I think, the reason why my hon. Friend the Member for Burton secured this debate today. It is about the issue of awareness. We should put every effort we can into campaigns to have everybody tell their next of kin their view on donation. That is what I say to people in schools when I talk to them; I say to people, “Tell your family what your view is, so that they know clearly.” Carrying an organ donation card is helpful in that respect, because it very much gives an indication of someone’s view. That is why I was interested in the point that my hon. Friend has made in his interventions on me.
What we really need, and the Government can afford it, is a big advertising campaign based on the message, “Tell the family. Make sure your next of kin know your wishes.” If we had such a campaign, we would raise the number of consenting next of kin. If we can increase the number of people in Britain who consent to organ donation to the level it is in Spain, we will not have the thousands of people dying that we have now.
Mark Durkan (Foyle) (SDLP)
Thank you, Mr Hollobone, for calling me to speak. It is a pleasure to join in this debate under your chairmanship. I pay tribute to the hon. Member for Burton (Andrew Griffiths) for introducing the debate in a sensitive but passionate way.
I recognise that the hon. Member for Montgomeryshire (Glyn Davies) and I may come at this issue from slightly different perspectives, and may put slightly different emphases on the issues of presumed consent, opt-outs and soft opt-outs, but there is absolutely no difference between us—or between any of us who are present—as regards our fundamental motivation, which is to secure the optimum number of organ donations, and the optimum benefits for the lives of so many of our constituents.
Like other hon. Members, I have personal experience of this issue. I had a friend who, many years ago, benefited from a kidney transplant provided under the fairly primitive arrangements then in place in the grounds of the then Belfast City hospital. It did not seem to be the most propitious setting in which such a significant life-improving operation could take place, but it was life-improving, thanks to the skill and commitment of those involved. Of course, services have developed in so many ways since then.
I have seen a number of people in a family suffer from cystic fibrosis; that family lost children who died while waiting for transplants. Like others, I have made commitments and promises to do everything that I could in any opportunity that fell to me in public life to improve the prospect of more transplants being available for people in such circumstances.
I have also seen people take some consolation in their bereavement and grief from the organ donations of their loved ones, which has meant that someone else has had the gift of life, or improved life. Obviously, I have also seen people who have benefited from organ transplants, although perhaps not for as long as they would have wished. Again, those benefits will be achieved and extended if we can develop and improve the services of those very special skilled people who are involved in delivering the benefits of transplants to people.
I also speak as someone who witnessed, as we all did in Northern Ireland, an act of altruism by a fairly public figure, Joe Brolly, a brilliantly skilled sportsperson and all-Ireland championship winner who played for Derry back in the early 1990s. He donated a kidney to help a friend, Shane Finnegan, whom he had met as a volunteer coach in his local Gaelic Athletic Association club in Belfast, because he knew the difference that it could make. Unfortunately, the transplant has not worked out for Shane, but the cause goes on. Both Shane and Joe are absolutely united in encouraging politicians and legislators in Northern Ireland and elsewhere to achieve more progress on organ donation. They are categorically in favour of moving towards a soft opt-out system.
All of us are sensitive to some of the concerns that are feeding back to us in that regard, however. I was in this Parliament back in 2008, and was supportive of the initial indications coming from the organ donation taskforce, but we were all sensitive to the issues and considerations that came back to us. We want to move forward on this issue, and to achieve progress that is sustainable and durable, with no unforeseen consequences or counter-productive effects. I believe that presumed consent leads to higher donation rates, but the way that it is framed is important.
I note the important point, made by the hon. Member for Burton, that the current opt-in system is essentially a soft opt-in, in that families are able to override it. It might be more productive to discuss and take forward some of the issues connected to the soft opt-out, rather than to go for a hard opt-in; the latter might be more difficult and could create other issues or difficulties, particularly given the point made by the hon. Member for Strangford (Jim Shannon) about the apprehensions or misgivings that are shown in survey research to underlie some of the concerns and reservations that kick in whenever people are asked to think beyond whether they simply support organ donation in principle. When they think about it in practice, reservations or concerns seem to come into play, and all of us who might have a different perspective on how to legislate on this issue need to be sensitive to those concerns. We should not conduct the debate in such a way as to create mixed signals, or leave people thinking that there might be something untoward going on in relation to how organ donations are secured.
It is important to respect the fact that there will be legislation at different levels, not just within the UK but within these islands. The Welsh legislation has been cited, and the Irish Government are committed, under their programme for government, to legislate for a form of soft opt-out. In arguing about the different legislative choices, we need to be careful that we do not send out messages that create any doubts or difficulties.
Steps taken here since 2008 have achieved a much higher rate of organ donation. If the legislation in Wales achieves a higher rate of donations, and if legislation in the Republic does the same—there is also a consultation going on in Northern Ireland—we need to remember that those organs may not necessarily all be used within the jurisdiction in which the relevant legislation has arisen. That is another consideration. If we are to optimise not just the number of organ donations but the number of people benefiting from donations and transplants, we need to look at the networks, systems and infrastructure, to make sure that we fully utilise as many organs as are donated. Some organs are available on a so-called national basis, and others on a regional basis. That creates a disparity in terms of benefits and effects.
One concern I have heard about whether organ donation was worth while came from a constituent, who told me that they had watched a TV drama—I am not sure whether it was “Holby City”, “Casualty” or something else—in which being able to get the relevant organ for donation came down to whether a doctor in one hospital knew somebody in another hospital. My constituent was concerned about the idea that whether the organ donation system actually worked could come down to something so coincidental; they were left thinking that the system was not that sophisticated, and was hit and miss. I do not know whether that anecdote is accurate. If it is, it proves that there is a need to improve networks; if it is not, it proves that broadcasters and others need to be careful about the kinds of indications and suggestions they give about topics such as this, and should not use dramatic licence in a way that gives people cause to doubt the efficacy of the transplant system.
The British-Irish Council takes in all eight Administrations around these islands who legislate and provide services in different ways. It seems to me that it would be a good forum in which to not just discuss the balance, comparability and compatibility of legislative arrangements throughout those jurisdictions—the more consistent they are, the better—but make sure that we optimise the networks, so that organs that become available in any one part of these islands can benefit anybody in any other part. It should not be left to a random mix of different networks, as that sub-optimises the use of organs. They are given for the best of motives, so we need to make sure that we have the best arrangements to extend the benefits of these important gifts.
Mr Philip Hollobone (in the Chair)
We have 23 minutes left, so if the Front Benchers will split the time between them in a fair and equitable way, it will be much appreciated.
Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)
It is a pleasure to serve under your chairmanship, Mr Hollobone. I thank the hon. Member for Burton (Andrew Griffiths) for calling a debate on such an important issue, and for his passionate reflections on organ donation and on the fact that the chance of life for one person can often come at a time of trauma for another family. There were also emotional and personal contributions from the hon. Members for Strangford (Jim Shannon), for Montgomeryshire (Glyn Davies) and for Foyle (Mark Durkan).
Organ donation is surely one of the great success stories of the latter half of the 20th century, not just for science, but for humanity. It is a precious thing: there can be few greater achievements than to have given life to those who were on the verge of death. Fewer than 5,000 people each year die in circumstances in which they are able to become a donor. Despite the sadness of the moment, the act of organ donation can become a major comfort to bereaved families as time passes.
There have been major improvements to the infrastructure and organisation of organ donation over the past few years. Those improvements have been reflected in donation rates, which have increased significantly. I am extremely proud of the fact that in 2001 the previous Labour Government said that we would double the number of donors from 8 million to 16 million by 2010, and achieved that target a year early, by 2009. That was thanks to an enormous effort from large numbers of people.
The recommendations from the organ donation taskforce in 2008 set in train many of the reforms that NHS Blood and Transplant has made. It laid the path for many of the improvements we have seen, such as, for example, the creation of a network of specialist organ donation nurses—already referred to in our debate—who support families in considering organ donation at a difficult time.
As we have heard, over 20 million of us are on the NHS organ donor register. Again, that is testament to the changes that have been made at every level in hospitals, to the commitment of critical care and emergency department staff to donation, and most of all to the generosity of the donors and their families.
We cannot be complacent, however. As we have heard in the debate, we have lower registration rates than some of our European neighbours, and too many people still die while waiting for a donation—three people every day, which is three too many.
We need to raise awareness, and hon. Members have been right to emphasise the need to raise more awareness of the importance of joining the register and supporting our families and friends when they do so. This year marks 20 years since the NHS organ donor register was launched, and there are now many ways in which people can sign up. There is an online form and a 24-hour donor line. People can register through a text message, at their GP’s surgery, or when they apply for their driving licence. I signed up through my Boots advantage card. Yet we still have more to do. Are there any more ways in which we can ask people to sign up? Boots advantage cards are disproportionately owned by women. There are ways in which we can target men; many supermarkets have cards. Should we be thinking about that? I would welcome the Minister’s thoughts on the different ways in which we can encourage people to sign up.
We know from market research carried out by NHS Blood and Transplant that 51% of the population definitely want to donate their organs, and 31% would consider it. Only 31%, however, have actually signed the organ donor register. The question of how to bridge that gap is vital. As MPs, we will all have received e-mails telling us that national transplant week runs from 7 to 13 July, and that is a great opportunity for us all to raise the profile of the issue. Will the Minister share with us the Department’s plans to mark national transplant week and encourage more people to sign up to the register?
As the hon. Member for Burton mentioned, we need to get more people on the register from specific communities. The challenge is not only getting more sign-ups to the register, but targeting specific communities and areas that we know are losing out from the stark inequalities in the system. My constituency is in Liverpool, in the north-west, where patients are waiting the longest for a transplant. We also have the highest death rates among those waiting. In the north-west, 62.2% of patients waited more than six months for a transplant, whereas the average for England is 47.3%; and 23.2% of patients waited more than 18 months for a lung transplant, whereas the average for England is 15.8%. Those long waits are themselves concerning, but where some people are waiting longer than others for a life-saving operation purely because of where they live, it is something we need to address urgently.
It is not just where someone lives that can affect their chance of getting a transplant operation. As we have heard, people from black, Asian and minority ethnic communities are up to three times more likely to need a transplant than others, yet because organ matching is likely to be closer when the ethnicity of the donor and recipient are the same, they have to wait much longer. On average, a person from a BAME community will wait a year longer for a kidney transplant than a white patient. Many die while waiting for an organ to become available, and the Government must urgently tackle that situation.
The debate this morning has centred on organ donation, although Members have referred to bone marrow donation, which is an important area for us to reflect on, and an area where we should look at lessons that we can learn. More than 90% of white patients in need of a bone marrow transplant find a match, but for the BAME population the matching rates can be as low as 40%, which is a difference of 50 percentage points. We need to look at that. I am of Ashkenazi Jewish descent, and I joined the bone marrow register because I know how hard it is for people from my community to find a donor.
A number of campaigns have led to a massive increase in the number of people joining that register. The Berger family—no relation to me—led the campaign #Spit4Mum. A woman called Sharon Berger had a very rare blood disease. She was of Ashkenazi Jewish descent, but she needed to find a match in a hurry. Her children, Jonni and Caroline, started the #Spit4Mum campaign, which has raised awareness among all BAME communities and had a high press profile. There was a 1,700% increase in Jewish people joining the bone marrow register in the year that they ran that campaign. We need to see that happening in all communities right across the country, and it needs to extend to organs as well.
We cannot accept that some of our citizens will be far more likely to die than others because of where they live or their ethnic background. Will the Minister address that point specifically and outline what concerted action the Government are taking to tackle it? In particular, what will the Government do to improve the diversity of the organ donation specialist nurses? Another Member raised that issue.
We need to ensure that the wishes of those on the register are granted, and we must do more to support families in that. In 2011-12, 125 families overruled the individual’s intention, as recorded on the NHS organ donor register, to become an organ donor. Of course, that is understandable. The decision to allow their loved one’s organs to be used is incredibly tough for a family to make when they are in the throes of grief. We know, however, that many family members were unaware that it was what their loved one wanted and found it difficult to come to terms with such a decision at such an awful time of loss. That is why it is vital that we encourage and support families in having conversations about organ donation. Family consent rates have been static at around 55% to 60% over recent years, but that shoots up to 95% when those family discussions take place. NHS Blood and Transplant is taking steps to address that, so I would welcome an update from the Minister on its progress.
Finally, I want to touch on the opt-out or presumed consent system. We have heard some Members’ positions on that, but if more Members had been in the debate, we might have heard a wider variety of views. Some professional groups, including the British Medical Association, consider the system to be the most effective solution in addressing the shortage of organ donors. The system has advantages. To return to an earlier point, there is a gap between the 51% of the population who definitely want to donate their organs and the 31% who have actually signed the register. We would, however, have to consider carefully the safeguards the system would need and continue to review the evidence from countries that already have it in place. Wales will be introducing the system later this year. Any change in legislation would need to have the backing of the public. Whether we agree with assumed consent or not, I hope we can all agree that it is time we started a major public debate about how we can best tackle the shortage of organ donors in this country. What steps is the Minister taking to start that national conversation?
In conclusion, this issue transcends party politics and is important to all Members. We are making progress, but we need to maintain our momentum. I welcome the Government’s strategy for organ donation, which was laid out last year. Its first goal is as follows:
“action by society and individuals will mean that the UK’s organ donation record is among the best in the world and people donate when and if they can.”
I would be very happy to work with the Minister to continue to build awareness of the importance of joining the organ donor register, and to work towards achieving that critical goal.
The Parliamentary Under-Secretary of State for Health (Jane Ellison)
I will do my best to respond to all the points raised, although I suspect I have the least time of any speaker in the debate. I may prove challenged in that regard, but as colleagues know, I will always follow up afterwards if there is some point which I am unable to get to.
I congratulate my hon. Friend the Member for Burton (Andrew Griffiths) on securing this debate. Just having this debate is part of the answer to the question he posed. The issue can affect us all, and I am grateful for the opportunity to raise its profile and to have the debate ahead of the special week coming up in July. The debate is particularly useful in giving us a chance to reflect on how we can best use that time in Parliament.
I put on record my tribute to those who work in the NHS with such dedication, determination and commitment. They provide such fantastic care, particularly, in the light of what we are talking about, at difficult times in families’ lives. To try to address some of the specific points raised, I will take as read many of the facts and figures put on the record by my hon. Friend and others. We acknowledge those figures. The one thing I want to do is thank everyone who donates and everyone who takes part in the programme. I also pay tribute to local leaders, such as William Saunders, whom my hon. Friend mentioned.
[Mr Peter Bone in the Chair]
We can take it as read that we do not have enough donors, but we have made significant progress. The Government are continuing the work of previous Governments by investing in the donation programme to optimise transplantation. The donation programme was strengthened between 2008 and 2014, increasing donation rates by 63% and transplant rates by 47%. The trend is positive, but today’s debate has explored how we can accelerate progress and address some of the more stubborn problems.
As hon. Members have already suggested, too many people are waiting too long for a suitable organ to be donated, even though organ donation has increased by over 3 million since 2010 to over 20 million. One organ donor can save or transform as many as nine people’s lives. The exchange is not one-for-one; it is an extraordinary opportunity to change many different lives. It is also worth recognising, as the shadow Minister, the hon. Member for Liverpool, Wavertree (Luciana Berger), touched on, that although half a million people die in the UK each year, fewer than 5,000 die in circumstances in which they can become donors: the pool of people is not as big as we often think and is actually relatively small. If I have time, I will discuss how we are considering how the pool might be expanded.
Much of the debate rightly focused on the UK’s consent rate, which is one of the lowest in Europe. Last year, four in 10 families said no to allowing their loved ones’ organs to be donated. In 2012-13, 105 families and in 2013-14 119 families said no even though they knew that their family member was on the organ donation register and wanted to be a donor. That equates to many transplants and many people’s lives that could have been saved or enormously enhanced. Family agreement is a crucial part of the donation process, but because people do not always want to discuss their wishes, relatives tend to say no when in doubt.
I want to explore some of the operational aspects of donation. We all agree that we want more organ donation and more people on the register, but we should consider some of the challenges, in particular the one put forward by my hon. Friend the Member for Burton about why people’s wishes can be overridden. To be clear, we do not need to change the law, which currently protects the right of the individual to be an organ donor. The challenge comes from the complexity and sensitivity of operational issues and not legal issues. Clinicians have a duty of care towards the family. For example—I have every reason to believe that this is based on reality—if it is three in the morning and a clinician is faced with a family who do not want their relative’s organs to be donated and they are crying and clinging to the body, the clinician is likely to go with the family’s wishes.
Jane Ellison
If my hon. Friend does not mind, may I try to get through this point?
That example highlights a difficult situation for a clinician. Furthermore, if the family’s wishes are overridden and they make a big campaign out of it and express their grief and dissatisfaction publicly, even though they know the wishes of the deceased, the programme as a whole could be put in jeopardy. If the Burton Mail ran the headline, “They took my son’s heart against my wishes”, the impact on those on the donation register and on families who want to have that conversation could be significant. The issues are sensitive, but it is not for lack of will that people do not ensure that an individual’s wishes are respected. It is important to understand the pressure that clinicians are under in those difficult circumstances. I want to put it on the record that, once retrieved from a body, a heart needs to be used within six hours, livers and lungs within 12 hours and kidneys within approximately 24 hours. The decisions have to be made quickly. It is not like the reading of a will, which can take place weeks, months or years later once calm has been restored and people are more reflective. Such decisions must be made on the spot.
I hope that that provides a little context as to why clinicians face challenges. Most organ donors are not on the register, so the key thing is to change the culture around how we talk about the end of life and to make donation a natural thing for everyone to allow. For some people and communities, however, that is not easy.
I pay tribute to the specialist nurses for organ donation—the lovely SN-ODs—for their wonderful work. There is no doubt that having trained people who can have conversations at sensitive times is absolutely critical. I note the challenge about the number of specialist nurses drawn from minority and ethnic communities, who we know make a difference, and I will discuss it with NHS England and NHS Blood and Transplant.
Our strategy is evolutionary, but that does not mean that we cannot make big leaps forward in some areas. The nudge work to get more people to sign up has been extraordinary in some cases. In one of the largest public sector studies of its kind, over 1 million people took part to test eight different ways of asking people to join the register. That has resulted in some significant gains, as was mentioned by the shadow Minister. There is a range of other measures, including using social media and other points of contact. There is a schools project, “Give and Let Live”. Getting teenagers to discuss the subject with their families and become thought leaders is important. As a result of the work going on in schools, young people are often good at leading conversations within the family.
National transplant week is coming up. I do not have time to go into the details, but many things are happening around the theme of “Spell it out”. It is all about the conversation and about getting family members to talk to each other. Given the interest—I am sure that Members of Parliament can help—I will attempt to write to all colleagues with more details about the week and how we can play our part and do our bit in our constituencies to lead the conversation. For example, my hon. Friend the Member for Burton visited a local mosque to see whether he could help to lead the conversation there, something which in many cases is far more effective than top-down campaigns. I do, however, note the challenges around some of the big, high-profile, in-your-face campaigns that have been run in places such as Scotland.
I want to assure the hon. Member for Strangford (Jim Shannon) and others that work is going on to consider widening the pool of donors. The Royal College of Paediatrics and Child Health is doing some research on babies—a sensitive subject—to see what can be done about the challenge of child donation. The Advisory Committee on the Safety of Blood, Tissues and Organs is reviewing the evidence on the outcomes of UK transplants of organs from donors who had cancer or a history of cancer. We are beginning to learn more about the possibility of successful donation even when someone has suffered from cancer, and SaBTO is drawing up a series of recommendations to help transplant surgeons.
It is also worth saying that, even in Wales and in Northern Ireland were the private Member’s Bill to succeed, it is still the case that a family can override a decision in the circumstances that I have described. We must be sensitive to the circumstances in which decisions are being taken. In Wales, relatives will still be asked to support the donation and can object if they know that the deceased would not have consented.
In the remaining minute or so, I want to say that it is absolutely right for Members to place concerns on the record about donation from black, Asian and minority ethnic communities, where the refusal rate to donation is nearly 80% compared with around 40% nationally, which is significant. My Department supports the National Black Asian and Minority Ethnic Transplant Alliance, which does great work in this area, including, for example, on consent rates. Subject to parliamentary business, I intend to visit Birmingham next week to launch a new project to train peer educators from the Pakistani Muslim community in Birmingham. We are training community champions there to go out and do some of that work. I am happy to talk to colleagues to see whether we can replicate that elsewhere. There are some significant cultural, rather than doctrinal, reasons why—
Jane Ellison
I do not think that I will be able to give way to my hon. Friend. I hope that he will forgive me. We can perhaps speak immediately after the debate.
In conclusion, we can do many things to encourage more people to register. We are absolutely open to ideas from hon. Members on both sides of the House and all parts of the country and the world. We review and are led by the evidence, as my hon. Friend said. Debates such as this provide an excellent opportunity to raise the issue’s profile and we can hopefully do more in Parliament as national transplant week approaches. I will end by paying tribute to the great work of the excellent NHS Blood and Transplant.