Motion made, and Question proposed, That the sitting be now adjourned. —(Angela Watkinson.)
This is the first time I have served under your chairmanship, Mr Crausby, and it is a pleasure to do so.
I have several brief comments to make before I start on the substance of my speech. First, I must declare an interest, although not a pecuniary one. I am a member of the Kidney Wales Foundation and it is important that I make that clear at the start. I have been interested in this subject for many years because a very dear friend of mine was one of the first to receive a heart and lung transplant at Papworth. She died about two months ago, but for 20 years we discussed the subject on a monthly basis. We did not agree, but our discussions inspired my interest in transplantation as a whole. In particular, we worked on local dialysis provision in Montgomeryshire.
I thought very carefully about becoming involved in a high-profile way because most of my friends and colleagues in the Kidney Wales Foundation take a different view from me. I am not in favour of presumed consent, whereas nearly all of them are. In my view, the way forward is to ensure that everyone knows about the issue so that people’s views are known when they die. Having a public debate is in itself a very good thing to help to achieve the objectives I want.
I think we all agree about the need to increase the availability of organ donors—those who are in favour of presumed consent and those who want to retain the informed consent system. The difference is that I do not believe that presumed consent will deliver an increase in organs for transplant. The evidence tells me that it makes no difference. The reason I sought this debate is that the Government in Wales have proposed to opt for presumed consent, which would inevitably have an impact on the rest of the United Kingdom and makes this a very proper debate for this Chamber.
I must make it clear that my opposition to presumed consent has nothing to do with ethics or morality, though I believe that there is a strong ethical case for opposition to it. Others, including the Archbishop of Wales, have articulated the ethical arguments much better than I can. It cannot be right to interpret the absence of an objection as a considered declaration of support. They cannot be seen as the same thing. Changing the system from an act of giving by the citizen to an act of taking by the state is a genuine ethical consideration, but my opposition to presumed consent is based not on ethics but on efficacy. There is simply no firm evidence that it will deliver any more organs for transplant.
In the final years of the previous Labour Government, the then Prime Minister, the right hon. Member for Kirkcaldy and Cowdenbeath (Mr Brown), began advocating presumed consent, as some hon. Members here may remember. He established a Department of Health organ donation taskforce. I believe that the chief medical officer at the time also supported a change to presumed consent. The taskforce was instructed to examine presumed consent in detail and to provide a report for the Government. The taskforce consisted of a large committee of specialists under the chairmanship of Dame Elisabeth Buggins, with several sub-committees to consider particular issues. Its report, published in 2008, made it absolutely clear that presumed consent was unlikely to increase organ donation rates in the UK and risked diverting substantial resources—it would cost £45 million to establish and several million pounds a year thereafter—from effective solutions. The report is the most comprehensive analysis of presumed consent ever carried out. It runs to several hundred pages.
I have a copy of the Buggins report here. Did my hon. Friend take from his reading of it the fact that at the beginning of the process many of the people who were part of the taskforce were strongly in favour of presumed consent, and it was as a result of the detailed work undertaken that their viewpoint came to be changed? That was a crucial part of what emerged from the report and is highlighted in the conclusions.
My hon. Friend makes a good point. Because of the brief that the British Medical Association has circulated to Members, I want to quote the report’s conclusions so that we know what the taskforce actually said. One of the main recommendations states:
“The Taskforce’s members came to this review of presumed consent with an open mind, with many sympathetic”
to presumed consent. It went on:
“the more the Taskforce examined the evidence, the less obvious the benefit, and the more multifaceted and multidimensional the issue of increasing donor numbers was revealed to be…The Taskforce reached a clear consensus…that an opt out system should not be introduced”
as it could impact negatively on organ donation.
I was quite shocked to receive the BMA parliamentary brief because it sets out without the slightest doubt to give the impression that the taskforce recommended the opposite of what it did recommend. That is verging on a lack of professionalism. I have huge respect for the BMA and I was very disappointed to receive its parliamentary brief. It will seriously damage my confidence in such briefs in the future, whereas I depended on them in the past.
When someone dies it can be very difficult for doctors to talk about organ donation at that time. Does the hon. Gentleman agree that what we need is a huge drive to get families to talk about consent well in advance? We must be honest and acknowledge that organs that are fresh from healthy bodies are the most desired, and it is often the tragic deaths that lead to organ donation. We need to get as many people as possible signed up, other than those with strong religious objections. If people are signed up, doctors can have an informed discussion with them.
I absolutely agree, but I do not necessarily agree with having a list identifying people. I hope to cover that point. Having people’s views identified outside the traumatic circumstances that surround a death is absolutely key if we are to increase the number of organ donations in this country. That is what the evidence in other countries tells us.
When the taskforce was set up, the Prime Minister of the day expected it to support a transplant revolution, but of course it did not. A similar conclusion was arrived at by a cross-party group of Assembly Members who looked at the same issue. The Members I talked to went into that committee expecting to support presumed consent, but they said in the Assembly that it should not be presumed. They did not think it would deliver the increase in organ donation levels that was generally anticipated.
The second report of the organ donation taskforce in 20008 recommended an improvement in transplant co-ordination, and that is being implemented. The number of organ donors in the UK has risen from just over 800 in 2008 to more than 1,000 last year. That is an extraordinary and dramatic improvement that has saved hundreds of lives. I have searched pretty hard, and the evidence I found is that the way forward is to look at the problem logically and in depth, conduct serious research and then take well-considered action.
Many people support presumed consent because they intuitively feel that it must make a difference. Opinion polls show support, and it is not surprising that they do. When people are going around saying that the change to presumed consent will increase the number of organs available, others will automatically say that they are in favour, but the reality is not what they think. There is a misconception that, if a citizen does not put their name on a centralised, opt-out register, their organs can be used for transplantation. This is a half-consent system, and it is not the presumed consent system that is being proposed. With soft opt-out, or presumed consent with safeguards—these are the phrases used—the actual decision to donate still rests with potential donor’s family, as happens under the current system. The key issue—the point raised earlier by my hon. Friend the Member for Cardiff North (Mr Evans)—is that the donor’s wishes are known by his or her next of kin.
It is always dangerous to draw conclusions from international examples but, for many years, Spain was presented by those who support presumed consent as proof of the effectiveness of that system. Since the late 1980s, Spain has had the best rate of organ donation in the world and has rightly been recognised as a model for other countries. Because Spain legalised presumed consent in 1979, it has been assumed that this played a key part in its success. However, the 1979 legislation to introduce presumed consent had no impact whatsoever on Spanish donation rates. Key organisational changes introduced 10 years later, in 1989, delivered the success of which Spain is so rightly proud. Spain does not have, and has never had, an opt-out register.
The director of the Spanish organ donation body, Dr Rafael Matesanz, has said that the 1979 legislation is dormant and plays no role in Spain’s outstanding organ donation rates, but this fact does not deter the supporters of presumed consent. They now ignore Spain, citing cultural differences to explain why Spain is not a good example to follow. They also ignore the fact that the United States has one of the best organ donation rates in the world, despite there being no presumed consent there. In fact, civil liberties issues in the States would almost certainly prevent presumed consent being introduced there.
The focus now has moved to Belgium and to studies performed in Belgium 25 years ago, between 1984 and 1987. I tried to discover what happened, because I want to see more organs donated. If a system works, and there is evidence to show that it works, it is important that we study to such examples, so I have gone to a lot of trouble to find out what happened in Belgium.
Belgium introduced presumed consent legislation in 1986. The key result was that the rate of kidney transplantation in Belgium rose from 200 per annum in 1984-85 to 300 per annum in 1987. Again, under more detailed examination, the claim that this is the consequence of presumed consent just does not stand up to scrutiny. The results of these studies were published, as a page and a half meeting report, in 1990, by L Roels and co-workers, Transplantation Proceedings, volume 22, pages 2078 to 2079. The authors state clearly that the presumed consent legislation
“was consolidated by a nationwide information campaign about the benefits of organ donation…and is being maintained by continuous efforts to inform healthcare professionals about the modalities of organ procurement procedures.”
More importantly—crucially—the authors go on to say:
“Whereas before 1986 most smaller non-university hospitals were reluctant to participate in organ donation activities, by lack of any legal security in the absences of an adequate legislation. The majority of organs harvested” —
I do not like that word; I prefer “donated” —
“during the last 3 years were performed in this particular group of hospitals.”
Presumed consent was clearly a major factor in increasing organ donation in Belgium in the 1980s, but it is irrelevant to the current position in the UK because the legal certainties have never been an issue. It may have had some influence in Belgium but it is clear that Belgium is a very weak example of evidence on which to base a major change in UK policy.
As I understand his argument, the hon. Gentlemen is saying that in other countries other measures have worked to increase the level of donation, but he also seemed to be arguing that presumed consent would make matters worse, and reduce the number of organs donated. Can he explain how that mechanism would work?
I thank the hon. Gentleman for that intervention, because I would not want there to be a misunderstanding. I gave a direct quote from the organ donation taskforce set up by the previous Government, which said that there was no evidence of an increase, and indeed some danger that there might be a negative effect. I used that quote as a challenge to those who are suggesting that the taskforce report shows positive support. I did not suggest that presumed consent will decrease the level of donation.
It strikes me that the hon. Gentleman is saying that we have a choice – either presumed consent and no awareness-raising, or awareness-raising in the hope that that will generate more organ donation. From our nation of Wales, in the UK, we know that one person a week dies because they cannot have a transplant. I was on the Welsh radio programme “Dau o’r Bae” recently when one of the hon. Gentleman’s colleagues, the Rev. Felix Aubel, was adamantly in favour of presumed consent, and felt that there were very few ethical considerations against. There is quite a diversity of views, but I would contend that there is not the polarity that the hon. Gentleman suggests.
Of the people who died last year waiting for organs, 50 died in Wales, and the evidence from the world experience is that the system being proposed by the Welsh Assembly will reduce that number of deaths. The hon. Gentleman has produced nothing to suggest that that is not the case.
I thank the hon. Gentleman for his intervention, but I simply do not accept that. The evidence actually shows the opposite of what he has just said, and he is ignoring that evidence. This is an issue of such importance to me—probably the most important issue to me since I have been a Member of Parliament—that I have looked carefully at the evidence. I do not want to be advocating a course of action that in some way negates that evidence, and I do not think that that is what I have been doing.
The hon. Gentlemen has been very careful. He has cited the experience of Belgium and Spain. Would he also cite the experience of the survey held by the Kidney Wales Foundation, looking at 22 different countries, comparing the rates of donation and concluding that presumed consent would increase the rate of donation by up to 30%?
I thank the hon. Gentleman for that intervention. I referred to Spain because that is the example that all those who seek presumed consent have quoted for many years. I then referred to Belgium because when it was shown that the evidence from Spain did not support that argument, the example then used was Belgium. If there is evidence from 22 more countries, then I will have to see the results from them as well. I just do not accept that the international evidence supports the move to presumed consent at all.
I would like to explore this issue for slightly longer. The evidence indicates that what is important is the awareness, not the presumed consent. The Minister, on a point that I hope to raise with her later, wrote to me to indicate that awareness-raising, from just undertaking the taskforce report, has resulted in donation rates increasing by 28% over the last three years. Nobody could say that that is because of the system – it is because of communication and information.
I am hoping to come to this issue if I have time at the end of my speech. It is a crucial issue. I value the help that the British Medical Association has given me over the years. However, the Parliamentary brief from the BMA, which I referred to before, shocked me a bit; so I have gone to some trouble to understand its position. The BMA agrees with the move to presumed consent, and has done for many years. The position of the BMA is of great interest. It has been a vocal supporter of presumed consent since it adopted the policy in 1998, long before the report of the organ donation taskforce, which was a comprehensive study into the issue.
The BMA’s current position was overwhelmingly endorsed a few months ago at its annual representatives meeting, a very important meeting which was held in Cardiff and attended by hundreds of doctors representing regional groups throughout the United Kingdom and some special interest groups. Many dozens of motions were discussed over three days and votes are taken. A vote of 51% of those in the hall makes what is being discussed policy for the BMA. It seems scarcely credible that an important organisation can make policy on a complex issue in this way—as a sort of public speaking competition, rather than on the basis of detailed research. I do not accept that the BMA’s position on presumed consent can be treated seriously until it reforms the way it makes policy on complex issues. Given the influence of the BMA on public opinion, and that patients’ lives are at stake, there is a powerful moral obligation for it to undertake substantial research into this position before it continues to carry forward an issue that in my view damages the cause that it purportedly supports.
What is the way forward for patients who are at the heart of the debate? I want to come to the positive way forward. We know that the rate of organ donation is influenced by three crucial factors. The first is the number of potential donors. With rare exceptions, potential donors are comatose patients on life support machines in intensive care units. Inevitably, the level of intensive care provision is a crucial aspect of organ donation, and it is relatively poor in the United Kingdom.
That is one factor. Identification of all potential donors is another. Every patient who is a potential donor should be given the opportunity to become a donor, by early identification and discussion with his or her family. The Spanish have an extensive system of transplant co-ordinators, involving mainly part-time intensive care physicians. There is a lesson there for the UK.
Consent from the patient’s family is also key. This is influenced by background knowledge of transplantation and organ donation; the professionalism of timing, as to when we approach the family; trust in the medical profession and knowledge of their loved one’s wishes. Spain has a national training programme for its co-ordinators and a 24-hour information helpline open to the press and public, and places a high priority on public relations.
Consent cannot be legislated for. In 1990, the refusal rates in the UK and in Spain were the same, at about 40%. Over the last 20 years, the refusal rate in the UK has stayed roughly the same. In Spain, it has fallen gradually to the current level of 15%. There is a dramatic difference in what has happened in Spain, as a result of the systems outside presumed consent. That is the example that we should be following.
The second report of the organ donation taskforce recommended improvement in transplant co-ordination, which is being implemented. This is where the numbers I referred to earlier become apparent: the huge 25% rise in the UK and the 60% rise in Wales. It is a fantastic achievement. This is the approach we should be taking forward, which leads me to the final part of my speech this morning.
Does the hon. Gentleman agree that there is a particular problem with organ donation in black and minority ethnic communities? What does he think we ought to do, if we are not aiming for a soft opt-out, to raise the profile of organ donation to tackle health inequalities in these communities?
The figures that I have seen show that the refusal rate in those communities is much higher in Britain. The rate of allowing organs to be donated by the next of kin is actually reducing among the non-BME population in Britain. So there is a lot of work. I do not know the answer to that. I do not want to make suggestions that I have not researched. I am trying to stick to the research, and I have not done research into that, although it is clearly an issue. It was a specific part of a debate here about two months ago and it is an issue we must tackle.
Finally, those of us who disagree with the proposals being put forward by the Welsh Government and advocated by my friends at Kidney Wales Foundation and the BMA have a responsibility to engage seriously with what is a genuine attempt to increase the availability of organs for transplant. It is a worthy objective. It is accompanied by a commitment to invest considerable sums of public money to achieve it. It has led to a lot of debate already, particularly in Wales, to this debate today, and will lead to much more. Many hon. Members are interested in the debate. If Wales and the Welsh Government seek to introduce the legislation, there will be huge debate across the UK. The debate itself is hugely helpful.
The final point I want to make this morning is that we should build on what is so obviously working. There is currently a national transplant week and a national donor day. However, these do not impinge as much on the national consciousness as we would like them to in the UK. I admit that I did not know that they occurred. If part of the extensive resources which would be used to implement the presumed consent legislation were to be used to create a national donor and transplantation day in Wales, what a difference that could make. It could have real impact. The resources could be used to celebrate the donors and their families of the preceding year on television, radio and the newspapers. The success stories of the recipients of new organs who are living a full life would be inspirational as examples and would help discussion about this issue, so that next of kin would know what their families’ wishes were.
Would the hon. Gentleman consider the advantages of trying to have specific points in people’s lives when they are asked about organ donation, such as when they get their driving licence or their national insurance number, or something like that, so that there is a methodical way of asking people to sign up?
I thank the hon. Lady for raising the point. That is not directly related to the debate today, but the point raised would support and strengthen the current system of an opt-in card, and it is a good idea. I have thought about it a lot and most people would accept that that is a reasonable way forward. It asks people their opinion and requires them to think about the issue. As long as we can extend that—having them tell their next of kin what their position is—it could be very successful.
We could learn from what has happened in Spain: Spain is the most successful country in the world. We also could establish a 24-hour information telephone line, with many more lines available on the national organ donor and transplantation day, if it were set up. On that day the people of Wales could be encouraged at every opportunity to tell their loved ones and their next of kin what their wishes are regarding organ donation. Husbands, wives and children will always be asked their permission. If you are ever unfortunate enough to be a potential donor, you need to have your next of kin know your wishes, so that they will be implemented. Telling them your wishes is much simpler, hugely cheaper, more effective and far more flexible than presumed consent legislation. Establishing a national database is expensive; overseas experience suggests that only 1% or perhaps 2% of the population are likely to use it. We know that it is more probably some 10% of people who do not want their organs to be donated; those are the figures we get—that about 90% of people are content.
This is a poor substitute. We all need more organs available for transplant. There is no dispute about that—it is a worthy objective that nearly everybody signs up to. Building on the success that we are achieving, involvement in a transplant co-ordination system is the way to go. Building on the evidence and on our experience, we know that that is what works; not creating a bureaucratic, superficially attractive, presumed consent system that simply will not deliver what we all want.
This debate reinforces the view that Assembly Members never actually leave the Assembly, but continue their debates here in Westminster. This morning’s debate is not for us. The Government have 400 commitments in the coalition agreement; if they have 401 commitments then there is even less chance that they will deliver on this. There is no likelihood of change.
It is now a live issue in the Assembly. We are not the Assembly, we are a British Parliament, and I question whether this is an issue of primary concern. Of course we should talk about it, but sadly any possibility of reform is remote in this Parliament, although it is a live issue in Wales. This debate has been called in order to influence the debate in Wales and it is questionable whether it is a legitimate use of parliamentary time.
I congratulate my hon. Friend the Member for Montgomeryshire (Glyn Davies) on securing this debate. On whether this is an issue to be debated in Westminster or in the Welsh Assembly, is the hon. Member for Newport West (Paul Flynn) implying that no contribution to the debate can be made in a Westminster context? There is a real question mark as to whether the Assembly has the legislative competence to deal with the issue.
I served in Parliament before there was a Welsh Assembly, unlike the two hon. Gentlemen. Since it has come into being I have absolutely never, at any time, become involved with, made speeches on, or interfered in those responsibilities of education and health in Wales, which are the responsibility of the Welsh Assembly. We have to accept that and realise that there are Welsh Assembly responsibilities and other responsibilities here. I do not want to labour that point, however, because there is a more important point to be made—
No, I will not. I have been asked to be brief. We must get away from what we are hearing from prattling prelates and procrastinating politicians and look at the real issue. We cannot talk about a system that is working well, as was suggested this morning, when 1,000 families were bereaved last year in the UK and 50 families were bereaved in Wales. I will not talk about one family in my constituency where a young woman died waiting for an organ transplant because it is too heartbreaking a story, but I want to say something about the reality. Despite all the fine theories and words ahead, what is happening to real people in our constituencies?
Some of us listened to the testimony of Matthew Lomas and his mother when they came to Parliament a month ago. It was a dreadful story of suffering that moved us all. Matthew and his brother were born with congenital heart defects and they both had pacemakers. Matthew was suddenly getting a great deal of pain and discomfort and was taken to the hospital, where the diagnosis was a sombre one. His heart was growing and he would eventually die. He was told that on a scale of one to 10 his chance of surviving was at 9.9, and the family prepared for Matthew’s death. They were told that a heart transplant was a possibility, so they arranged for him to go to Birmingham’s Queen Elizabeth hospital, where he had a series of assessments. When the doctor told them that he would have to have a transplant, his mother said:
“Matt and I stared at each other it was so surreal. Had we both heard the same thing? We didn’t talk. Matt may have wept, I can’t be sure. I felt numb and could only think about my son who I had just been told was dying.
The sister came back in. ‘Had you been expecting to hear that?’ she asked gently. ‘No!’ we said together. It was the first thing we had said since hearing the awful news. ‘I thought Matt would need a new pacemaker.’ I said.”
She told the story—which some hon. Members will have heard—of the dreadful things that happened from then on. There were false alarms; a call from Birmingham came at 2 o’clock in the morning. They prepared themselves and started to drive up the motorway, only to be told when they were halfway there that the heart was not suitable. There were many other false alarms along the way. Eventually the transplant did occur—I find it difficult to read the whole story so I will cut it short. The family went through agony as the young man approached death. He was fitted with a device that would keep him alive for 28 days, but death was a certainty at the end. By good fortune—not from the wisdom of politicians or prelates—he survived. He is at home now and has a life expectancy of five years.
Another constituent of mine, a young woman the same age as Matt, died last year because there was no heart available. I believe we must say—because the overwhelming evidence is there in spite of what the hon. Member for Montgomeryshire (Glyn Davies) said this morning—that the weight of the medical evidence shows the best way forward, and that is the decision that the Welsh Assembly is about to take. For goodness sake, instead of going along as we are—particularly today—serving the few rather than the many and talking about our various political differences, let us realise that this is an area in which we politicians can save lives and lift the burden of anxiety from families waiting for organs. We know that all of the evidence—the fair evidence, not the procrastinating evidence we have heard this morning—shows that there will be more organs available. For goodness sake, let us allow the Welsh Assembly a free run to get on with it and lead the country as it has in the past with other reforms. We hope that England and the rest of the United Kingdom will follow suit when the reforms produced by the Welsh Assembly are proved to be a great success.
Thank you, Mr Crausby. It is a pleasure to serve under your chairmanship this morning and I will be as brief as I can. I must congratulate my hon. Friend the Member for Montgomeryshire (Mr Davies) on securing this debate. I know that he has taken a keen interest in this matter over many years and he spoke with customary conviction while presenting his case. I do not agree with his case, but nonetheless I respect his conviction.
The hon. Member for Newport West (Paul Flynn) also spoke with characteristic passion, and he spoke with passion about constituents, which is an important point to make. Another important point to acknowledge is that this is not a partisan issue. I happen to support the stance taken by the Welsh Assembly Government. It is not a Government that my party is part of, but I support the initiative of both Health Ministers in the Assembly, who happen to be Labour Members.
I will briefly explore the Assembly Government case and endorse the work of the British Medical Association. I will also highlight the work of the Kidney Wales Foundation, the British Heart Foundation, Diabetes UK Wales, the British Lung Foundation and the Kidney Welsh Patients Association.
I am not going to give way to the hon. Gentleman. I will proceed because many others want to speak.
Members of the Select Committee on Welsh Affairs received the request for legislative competence on this matter, although mercifully that was superseded by the referendum result, which conveyed greater powers to the Welsh Assembly. That is why it is now able to proceed in the legislative way that it is. The debate has, of course, been triggered by the publication of the White Paper by the Assembly Government on 8 November, which proposes a soft opt-out organ donation scheme for Wales, with a view to that becoming fully operational in Wales in 2015. Both contributions we have heard this morning have acknowledged the tragically large waiting lists for donors: 10,000 people UK-wide, 500 in Wales. The wider public support was acknowledged by the hon. Member for Montgomeryshire.
It was also acknowledged that earlier committee work had been undertaken in the National Assembly, and the committee was not exactly ringing in its endorsement of a soft opt-out proposal, although it did not rule that out. The then Health Minister opened the matter to public consultation, and some 81% of respondents in 2009 indicated that they were supportive of a soft opt-out scheme.
Despite those statistics and the overwhelming public approval for a scheme, tragically only 29% of us have signed up for organ donation. There has been much mention of the international comparisons. I will not dwell on them, other than to cite again the comparison highlighted by the Kidney Wales Foundation. It looked at 22 different countries with opt-out schemes—not just Belgium or Spain—and found that over 10 years there was a 25% to 30% higher donation rate than for informed consent schemes. I appreciate what has been said about an evidence-based scheme, but we must not be selective in the evidence used. That is critical—we need to look at the whole picture.
I strongly contend that a soft opt-out approach must not be seen in isolation. The Assembly Government is not arguing that a soft opt-out scheme alone will work and do the job that we all wish to see. As the hon. Member for Llanelli (Nia Griffith) said in her intervention, we need to heighten publicity, which is absolutely critical. Initiatives such as the use of the Driver and Vehicle Licensing Agency, so that when people apply for a driving licence they are asked whether they wish to join a scheme, would play an implicit part in a soft opt-out scheme.
I will carry on, because I am conscious of time.
Critically, the Assembly Government has also responded to the need to increase infrastructure to cope with transplants. It is clearly developing that: the transplant directorate of the University hospital of Wales in Cardiff is the only transplant organisation responsible for kidney and pancreas transplantation in south and mid-Wales. In March, £2.4 million was spent on the Cardiff transplant unit, which has been opened with a dedicated transplant team and with new recruits of surgical and nursing staff. The Assembly Government also committed £1.5 million to implement the recommendations of the organ donor taskforce. Infrastructure and public information, coupled with a soft opt-out scheme, is the key.
Finally, and critically, we need to address the ethical issue. The soft opt-out scheme has been described as somehow being ethically improper. I think that is probably the view—I hope I do not do him a disservice—of my hon. Friend the Member for Montgomeryshire. That view has certainly been expressed by the Archbishop of Wales. I would not dare to describe him in the glowing way that the hon. Member for Newport West did; I am a member of his Church, and I deeply respect the Archbishop of Wales. He has highlighted the issue of the relative power of the state and the individual.
As a Liberal—call me an old-fashioned liberal—I very much want to see the emphasis on individual choice. The hon. Member for Clwyd South (Susan Elan Jones) alluded to that point in her intervention. There will still be choice—the choice to opt into a scheme is still there. The archbishop’s article in the Western Mail stated:
“Organ donation…ought to be a matter of gift. If one takes organs without consent, on the assumption that a person is tacitly assenting by not opting out, then that is no longer a free gift to others. An organ donation ought to be precisely that…an act of love and generosity.”
I agree with those sentiments, but I do not accept that opting out in any way conspires against the spirit of generosity. That is where public information and the awareness issue are so important.
What we need to do, which is what the Assembly Government seek to do, is to extend that spirit of generosity so that it becomes the norm and so that the discussions that every family will have to have throughout people’s life about such matters are very much the reality. That puts the onus on the individual to make informed choices, and that should be highlighted. A point has been made about relatives and members of families. The soft opt-out option means—this has been made open to consultation by the Welsh Government—that there is a specific role for members of bereaved families, whose views will be taken into consideration.
I perhaps started this process as an intuitive supporter of soft opt-out. I remember going to a meeting organised by the hon. Member for Cardiff West (Kevin Brennan) earlier this year, when we met people who were waiting for transplant operations. There is a healthy impatience, certainly in the Assembly Government and among others of us, to see the issue resolved.
The hon. Member for Newport West talked about his constituency cases. One benefit of the House rising early yesterday was that I was able to watch a little more television than usual. I watched an excellent documentary last night about a young couple from Exeter: 21-year-old Kirstie has been waiting several years for a lung transplant. She struggled through her teenage years, and she even struggled through her wedding day while being unclear whether she could actually survive the day. The highs and the lows—the highs were that on two occasions she received telephone calls saying that a donor was available; the lows were realising that the donor was not appropriate. Miraculously, as she reached the end of her life, a suitable donor was found, and Kirstie is now recovering and enjoying an increasingly full life. Sadly, many of our constituents are not so lucky, which is why many of us are very impatient and why the National Assembly Government have taken the lead in pushing for a soft opt-out option.
I thought that I should speak, and it is a pleasure to do so, on this matter, which is one of some importance to me. Every person in this House agrees that something must happen. It is the strategy or the policy for the way forward that is the issue. I have to say that I totally support the point of view of the hon. Member for Newport West (Paul Flynn).
I have carried a donor card—it is a bit faded, but it is still a donor card—for more than 20 years. This is the second or third one. If this body that I stand in today should be in an accident, and there is an opportunity for donations, I would like my body to be used for that purpose to give life to others. That is a personal opinion. There will be others in this House who carry donor cards, and they will be of the same opinion.
My nephew Peter is a recipient of an organ donation. He received a kidney. I can well remember the day he was born—he is a year younger than my elder son—and he was a wee boy. He was born with about half a kidney, and it was touch and go the whole way through his life. The result of it all was that he received a donor kidney, and today his whole life has changed. Today he races motor bikes—a bit of a tradition in our family—and he has a job and a full-quality and normal life. That is good news.
In my constituency of Strangford, we had the opportunity to have a memorial garden. That was an initiative that came from local people, who worked with the Ards borough council and ensured that a portion of land was set aside earlier on this year—in May or June—for a memorial garden so that those who are recipients of donor organs and those families whose loved ones have passed on have somewhere where they can go to have a moment of quietness or of contemplation.
Some eight years ago, just a mile from the location of that garden, an accident took place in which one person was killed instantly and another survived for a few days. Months afterwards, the father of one of them came to see me. He was still heartbroken, but he told me that his son had managed, as a result of his death, to pass on organ donations, and the gift of life, to five families. That is another illustration of the quality of life that can arise out of such events.
I am conscious of time, but I shall make three quick points. Just four weeks ago, I put down an early-day motion for the House to consider. Through that, I became conscious that we need to do something better, because the system we have today is not working. Organ donations are not coming through and we must do something about that. We need to think outside the box, if I may use that terminology—it is used often about many things. People of the vintage of 70 to 80 years old should not be excluded from organ donation. If their bodies or organs are healthy, why not use donations from people of that age? Perhaps the Minister can give us an idea about that in her response.
The hon. Member for Ceredigion (Mr Williams) mentioned the TV programme, which I had actually seen the night before, although it was the same one. It very clearly illustrated the highs and lows of people who are waiting on organ donation—the highs when they think it is their turn and the lows when they find out that it is not suitable. It charted the life of one person through her youth, her marriage and the countdown of days after the marriage until she was on a life-support machine and had only three days to live, and then the organ donation came through. Again, that illustrates very clearly the things that we need to do.
I have been contacted by many constituents who are aware of the issue, of the need for organ donations and of the need for that to happen quickly. My last point is in relation to those who need a transplant, but—nobody has yet mentioned this—have a rare blood group. What are the chances of someone with a rare blood group receiving an organ donation from someone of that particularly group? It is one of those 100 to one or 1,000 to one chances. We therefore have to do something different. Whether that means a pilot scheme, so that people are automatically organ donors unless they say otherwise, which is what I believe we need; I would go a stage further, although I am not sure that everyone would agree.
Unless we have a system in place that gives the individual an option and ensures that organ donations can come through, we are not serving our people or our country well. I urge hon. Members to think very honestly about the issue and to move forward in a positive fashion. We need organ donation, we need it on a different system and we need it now.
In October 2006, my constituent Mrs Jeanette Crizzle very sadly died from acute myeloid leukaemia. Her husband Adam decided to set up the Jeanette Crizzle Trust, of which I have the privilege to be a trustee, to promote what has become NHS Blood and Transplant’s give and let live education programme for schools. At that time, we went to see the then Health Minister—she is now the Labour Chief Whip—and she kindly agreed to get the programme under way. Young people are the donors of the future and it is vital that we reach them. They are the ones who will keep future blood stocks healthy and provide life-saving organs in years to come.
The significance of that for this debate is that my constituent Mr Adam Crizzle, once his wife had very sadly passed away, did not leap to the conclusion that we should have a system of presumed consent; he leaped to the conclusion that we should increase awareness to encourage people to become donors in the future. That is something that I am very happy to support.
I am sure that we can all agree with the comments made by the hon. Member for Strangford (Jim Shannon) showing that the present system is not working well enough. Where we might disagree is how to make it work better. I come down firmly on the side of arguing that there is plenty more opportunity to increase the awareness and to encourage people to become donors.
I take this opportunity to praise NHS Blood and Transplant for the give and let live donor education programme. I am pleased that the Health Minister has agreed to meet Mr Adam Crizzle next month to explore ways in which that programme can be further advanced and improved. Some three quarters of schools are involved in the programme, which is targeted at 14 to 16-year-olds. However, many schools have not yet been reached, and I am sure that the Department of Health can build on the initial successes in the early years of the programme to ensure that it is extended even further.
I apologise to you, Mr Crausby, for not being able to stay to the end of the debate to hear the Minister’s remarks. However, I praise my hon. Friend the Member for Montgomeryshire (Glyn Davies) for securing this debate and for highlighting this important issue, and I pay tribute to all hon. Members who have contributed their passionate views to the debate.
This is a political issue. It may not be a purely party political issue, but it is a political issue, because ultimately it is decided by politicians. If a similar proposal were introduced for other parts of the United Kingdom in this House, it would probably be whipped by the Government, who I imagine would take a political position on the issue. That may or may not be the case, but whether or not the issue is party political, it is political because it is about life-and-death matters affecting our constituents, matters that are ultimately decided by politicians. That is our duty and we should not give politics a dirty name by saying it is not a political issue, because politics is important—often, it is a life-and-death matter—and this is one example.
I listened carefully to the arguments of the hon. Member for Montgomeryshire (Glyn Davies). I absolutely accept that he is entirely sincere in making those arguments and that he has considered the matter very seriously. I know that, through a close friend, he has personal experience of the issues involved. I also know of his work with the Kidney Wales Foundation, a charity that is located in my constituency and has done such sterling work to move the issue up the agenda in Wales and to help develop the proposal brought forward by the Welsh Assembly Government.
However, I struggle to understand the logic of the hon. Gentleman’s position. He appeared to be saying something with which we can all agree—that increasing the levels of organ donation will not simply happen through a proposal such as soft presumed consent and that other things could and should be done to increase organ donation. As he rightly said, the very fact that the previous Prime Minister raised this matter from the top and generated a taskforce and a debate has helped to improve organ donation, in the same way that the Alder Hey scandal had the opposite effect on rates of organ donation in the past decade.
There are things that can be done. One study cited in the science section of the Library’s note, which hon. Members may have read, stated that the four main factors for high donation rates are “an opt-out policy”, which we are here to debate, and
“a large number of transplant centres…a high percentage of the population enrolled in university education…and a high percentage of Roman Catholics”.
That may explain the sanctimonious hyperbole of the Archbishop of Wales on the issue. He may want to reconsider the position that he has taken and to consult some of his ecumenical colleagues in other parts of the Christian faith.
The reason why I struggle with the logic of the hon. Member for Montgomeryshire is that he said that his objection was not ethical. We do not therefore have to deal with the issue of whether the proposal is an imposition by the state, which should not in any way presume anything about what should happen to the organs of someone who has died. He said at the outset of the debate that his objection was not on such grounds; he said that he wanted to cite the evidence. When I asked him whether he thought such a soft organ donation proposal would make matters worse, he said that a line in the taskforce report stated that that was a possibility, but that that was not his position and that he was not arguing that a proposal for soft organ donation would make matters worse. At the very least, all the proposal would do, according to his own argument, is make things no better. Yet he accepts that, by raising the debate and the issue, organ donation rates are likely to increase.
My argument is that the proposal is not a significant imposition on the individual human rights of people, because it is soft organ donation. In practice, what would happen is that, when an organ becomes available, it will be presumed that the donor had consented but there is still the safeguard that the relatives of that donor have to be consulted. All that would change would be the nature of the question. It would no longer be, “Your loved one did not carry a donor card and did not indicate consent before this misfortune befell them, would you agree to their organs being donated?” Instead, the question would be, “As you know, in this jurisdiction it is presumed that consent is given unless somebody opts out, and therefore we intend to proceed unless you decide to veto that process.” That is the difference. In my view, logic tells us that, in those circumstances, it is likely that more organs will be donated. Even if that was not the case, and even if, as has been said, it made no difference whatever, are we not right to try?
I believe that the proposal will be a success, and we should try it. This is the advantage of devolution: it is possible for the proposal to be tried in one part of the United Kingdom just as the smoking ban was tried despite massive objections from all sorts of people. That proved a huge success and the ban was adopted in other parts of the United Kingdom. I think the same will happen in this instance.
I accepted in my speech that the proposal in Wales may have triggered my debate in some way, but this is an issue for the United Kingdom. We have all spoken about a situation that needs to be improved, and that needs to happen across the United Kingdom. That is what today’s debate is about.
Indeed, and I accept that. As I just said, I believe that the proposal in Wales will, eventually, lead to an improvement right across the United Kingdom.
On the constitutional point, the Welsh Government have taken legal advice and believe that they have the necessary jurisdiction to undertake the reform. If the United Kingdom Government and their legal advisers do not believe that to be the case, how should the Welsh Government react? I will tell you, Mr Crausby: they should react by making sure that they make any necessary changes to ensure that it is absolutely clear that the Welsh Government have the necessary jurisdiction to make that reform. Otherwise, we are heading for an unnecessary constitutional crisis. I hope that the Under-Secretary of State for Health will make the issue clear when she replies to the debate.
I am grateful to be called, Mr Crausby, and I shall be brief.
First, I should like to place on record my thanks to Mr Max Gabe Wilkinson, my former neighbour, who was the founder of the Kidney Research Foundation in Wales. More than 30 years ago, he signed me up to a donor card. I can say to the hon. Member for Newport West (Paul Flynn) that, as the vice-president of the Catholic Union of Great Britain, I have been a declared donor ever since, and therefore this is no prelatory speech.
My concern is to maintain the integrity of organ donation, and confidence and trust in the system. In context of UK policy and its impact on what is happening in Wales, my remarks today will be limited to what has happened in trying to promote more organ donation through the DVLA website. As part of a policy that applies to all of the United Kingdom—the Minister is aware of my concerns because I have written to her—it is legitimate to say to people, “Do you wish to opt into organ donation?” That new system has been in operation since 1 August, but in Wales, there is no capacity to say no. My hon. Friend the Member for Ceredigion (Mr Williams) put his finger on it when he said that there should be the option to say no. The Minister has helpfully written to me to say that there does not need to such an option because people can change their minds and decide to opt in later on. But if we are to have two separate systems, the option in Wales, as one of my constituents has written to me to point out, is that one cannot opt out if one is proceeding to declare a viewpoint on the DVLA website. Therefore, ultimately, if legislation is introduced in Wales—I am not expressing an opinion as to whether that legislation should be passed or not—there would have to be a different approach. Otherwise, one fundamentally undermines people’s ability to be confident that if they want to opt out, they can say so. They cannot exercise that choice on the current DVLA website.
Why is that important? It is important because we need to maintain that trust, and at the same time maintain the legal integrity of the system. Although it has been said that everything will be fine, and never mind about the legal competence, the issue relates to the position of the European Court of Human Rights. In the event of something going wrong, heaven forbid, we could end up with a negative situation in which the process that is adopted in Wales fundamentally undermines confidence in organ donation altogether. Those factors need to be in Ministers’ minds, and that is why I wanted to make a brief contribution to the debate.
I appreciate the opportunity to speak, and I will be very brief.
I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on his passionate speech, and I understand how he feels. If we put ourselves in the position of those who are waiting on transplants, the picture is entirely different. If any one of us sitting in this room were waiting on a liver transplant, a lung transplant or whatever, we would do anything to cling on to life for our families and our children.
I accept the moral and ethical issues, and personally I might have issues about the moral aspect, but would it really matter to one of us in this room whether it was an opt out, opt in, moral or ethical choice? If you had to grasp on to life, you would do anything. Having said that, I understand that there is wealth of different arguments and opinions in this room, but life is life, and we must try to help those who are waiting on organ transplants.
Between April 2010 and March 2011, more than 1,000 lives were saved in the United Kingdom from lung, heart, liver or combined transplants. As has already been said, those people would be dead today without those transplants. That represents 1,000 families who still have their loved ones with them. When we look at the percentages, transplants are now so successful in the United Kingdom that, a year after surgery, 94% of live donor transplant kidneys are still functioning well; 88% of kidneys from people who have died are still functioning well, as are 86% of liver transplants, 84% of heart transplants and 77 % of lung transplants. That is a fantastic achievement for the medical profession.
Although there are moral and ethical issues, I believe that we should try to find some way around them. Not only should this argument be debated in this Chamber, but it should be debated in the main Chamber. We should find some resolution to it, because life is precious to no matter who it is. Perhaps a pilot scheme launched by the Welsh Assembly is the way forward, but I believe we must find a resolution. The hon. Member for Kettering (Mr Hollobone) congratulated the give and let live campaign and that campaign should be extended. Primary schools were also mentioned in this respect. We hope and trust that a resolution can be found.
Genuinely held views have been expressed by Members in this debate. We heard from Members who are proud of their donor cards, but I would ask Members when they last saw an organ donor registration form. When was the last time that those Members were asked whether they would donate their organs when they die by those who do not know that those Members hold such donor cards? I agree with the hon. Member for Llanelli (Nia Griffith) that we need a methodical way in which people can sign up to the organ donor register. My hon. Friend the Member for Ceredigion (Mr Williams) referred to the success of measures in terms of driving licence applications, but they have only got us so far. We must go further.
The hon. Member for Kettering (Mr Hollobone) put his finger on it when he spoke about the importance of attracting young donors to the organ donor register. Later on today, I will meet the Minister in the company of young campaigners, Abby Thackray and Hope Milne, whose sign up, speak up, save lives campaign featured on Channel 4’s “Battlefront” programme. While the debate continues in Wales, we have a suggestion that gives us something to proceed with in the meantime, on which we could make progress in the rest of the Union. With the introduction of individual voter registration, I believe that there is a fresh opportunity to use a paper-based, individual process to invite every adult, as part of a canvass, to be a new organ donor. I hope that the Minister will embrace that opportunity when we meet her and the Minister with responsibility for constitutional reform later today.
Thank you, Mr. Crausby. It is a pleasure to serve under your chairmanship. I congratulate the hon. Member for Montgomeryshire (Glyn Davies) on securing this debate. I also pay tribute to the hon. Member for Chippenham (Duncan Hames) for his sterling effort in squeezing a whole speech into a minute and a half—he did very well.
The system of opt-in for organ donation has been the subject for debate for many years because of the serious shortage of organ donors and consequent waiting lists for transplant operations which has led to suggestions from a number of stakeholders that a review of the current approach to organ donation is long overdue. In the United Kingdom, the number of people awaiting transplant operations greatly exceeds the number of organs available. This shortage of organ donors means that some 400 patients, mainly those waiting for life-saving heart, liver or lung transplants, die each year before a suitable donor can be found. As we have heard during the course of this debate, the BMA, many transplant surgeons, patient groups and many hon. Members in both Houses would like the UK to adopt a system of presumed consent where it is assumed that an individual wishes to be a donor unless they have opted out by registering their objection to donation after death. I recognise that there are strong feelings on both sides of the debate, as we have heard today—not least those put so eloquently by the hon. Member for Montgomeryshire.
Hon. Members who have served in this House for some time will be aware that the former Health Secretary, my right hon. Friend the Member for Kingston upon Hull West and Hessle (Alan Johnson), asked the organ donation taskforce to assess the possible impact of a change to presumed consent and the acceptability of such a change for the United Kingdom. By doing this, the previous Government recognised the complexity of the issues and widely differing viewpoints surrounding systems of consent to organ donation.
We know that the taskforce examined the complex moral and medical issues around presumed consent, including giving the family of the deceased a final say on the donation of any organs. It also looked at the views of the public, health organisations and other clinical, ethical, legal and social issues raised by a wide range of stakeholders, while at the same time establishing a series of expert working groups to help gather the relevant evidence. The Minister will be aware that the resulting report, entitled “The Potential Impact of an Opt Out System for Organ Donation in the UK” was published in November 2008, recommending that the current system of opt-in be retained and the recommendations of the taskforce’s earlier report on organs for transplant, produced in January 2008, be implemented. However, in July 2007, the chief medical officer supported the idea of an opt-out system with proper safeguards and good public information. My right hon. Friend the Member for Kirkcaldy and Cowdenbeath (Mr Brown) also called for a public debate on the issue of presumed consent when he was Prime Minister and did not rule out changing the law to an opt-out system.
So what would actually happen under a system of opting out? It proposes that every person living in the country in which it is introduced is deemed to have given their consent to organ donation unless they have specifically opted out by recording in writing their unwillingness to give organs. Supporters of the introduction of such a system in the United Kingdom believe that establishing an automatic right to take organs when the donor has not expressed wishes to the contrary would lead to a significant increase in the number of potential donors. They also conclude that the relatives of, or those close to, a person who has not expressed a wish to donate would be relieved of the burden of making that decision at such a traumatic time.
However, one fear with presumed consent is that people will not get round to registering an objection and the subsequent expectation that organ donation should take place could lead to unnecessary distress for relatives and widespread adverse publicity. Many transplant recipients add that a donated organ is more easily accepted because they know that it has been positively given by the deceased whereas presuming consent would turn donation into an action by default.
Other concerns surround the potential medical risks involved in removing organs without full discussion with relatives. Families are a valuable source of information about their loved one’s previous health and relatives are questioned as part of the screening process. If an individual does not register an objection, it is possible that their silence may indicate a lack of understanding rather than agreement with the policy. It is because of these concerns that, in the majority of countries operating an opt-out system, health care professionals still consult the family to establish consent.
While always looking closely at both the pros and cons of the system of presumed consent, there is recognition across the health care profession and more widely that there is a crisis which leads to tragic loss of life—in the UK, at least one patient a day dies waiting for a transplant.
The former chief medical officer, Sir Liam Donaldson, was an enthusiastic supporter of presumed consent. He told The Guardian in 2007:
“We have something of a crisis in this country. Every day at least one patient dies while on the transplant waiting list. There are something like 7,000 people on the waiting list at any one time. There is a shortage of organs in this country and the situation is getting worse.”
A team at the centre for reviews and dissemination at the university of York focused on 13 studies and found strong links between presumed consent and increased donation rates. One of the studies found that donation rates were 25% to 30% with presumed consent. However, researchers also said that it was unlikely that presumed consent alone accounted for all of the effect as one study found that the number of transplant centres had a greater effect than an opt-out system. Other factors that had an effect on donation rates were death from road traffic accidents, health spending, public awareness and religion.
Support for presumed consent in the UK, as we have already heard, has grown steadily since 2000 and, in a survey carried out in 2007, 64% of respondents were in favour of moving to presumed consent. The BMA’s own figures are even more favourable, showing that around 70% to 90% of the population would be willing to donate their organs after death.
As I said earlier, when my party was in government, the then Health Secretary asked the organ donation taskforce to make specific recommendations to improve the infrastructure within which donation takes place and, since those were made, improvements have been achieved, with a 28% increase in donation rates over three years. The changes proposed by the taskforce include a wide range of measures designed to make the offer of donation a standard part of the care provided to dying patients—in the words of the taskforce, to make donation a
“usual and not an unusual event”.
As we have heard today, the Minister will be aware that this issue is being pursued in Wales with the National Assembly for Wales and the Welsh Assembly Government recently publishing a White Paper on an organ donation Bill for Wales which suggests an opt-out system with safeguards. As we have heard today, the moral and ethical arguments continue. It is right that we have this debate and have it in the United Kingdom Parliament as well as in the Assembly and that we raise awareness of this issue and help to educate people.
I share the concerns expressed today about the insufficient organs donated in the United Kingdom. There is no doubt that we need more people to realise that organ donation saves lives. We know that, in future, organ shortages—particularly for kidneys—are likely to increase. I congratulate the hon. Member for Montgomeryshire on securing this important debate, thank all hon. Members for their contribution and look forward to hearing from the Minister how the Government propose to resolve the crisis, what their position is on a presumed consent system and what action the Department of Health is taking to carry forward the work done by the previous Government on this issue.
Thank you Mr. Crausby. It is a pleasure to serve under you today. I congratulate my hon. Friend the Member for Montgomeryshire (Glyn Davies) on securing this debate on presumed consent. I also thank him for his thoughtful contribution. Like him, I am fixed only on the evidence. I do not have an ethical position on this—I will act on the medical evidence in front of me. Sometimes, with an issue like this, there is a huge danger that the plight of those waiting to have a transplant clouds the ability for some to consider the evidence clearly. What matters is what actually works. The hon. Member for Denton and Reddish (Andrew Gwynne), the shadow health spokesman, outlined some of the complex issues around presumed consent and what faces the public.
This is not a party political issue. It is an issue decided on by politicians, but I would be saddened if it became a party political issue. It is also not an opportunity to exchange insults. Rather, it is an opportunity to make a difference. So, if nothing else, I would urge hon. Members to leave the Chamber today, and call their local press to see whether. together, they can start a campaign to raise awareness and to begin a conversation in their constituencies. Politicians generally have considerable access to the press. On the whole, we are not averse to having the odd photo of ourselves. I am sure that we have opportunities to raise awareness of this important subject.
There are now about 10,000 people requiring a transplant. Three of them die every day waiting for a transplant or after they are taken off the list because, tragically, they are too ill. Research shows that the majority of people in the UK support transplantation. Extensive reference has been made to Wales, and we shall study those proposals carefully before we respond. But I want to make it clear that the Government do not believe that the introduction of presumed consent, by itself, will necessarily lead to an increase in donor rates. It is important that any Government keep the evidence under review.
As many hon. Members have said, the organ donation taskforce considered the issue of presumed consent in great detail. As my hon. Friend the Member for Cardiff North (Jonathan Evans) said, many of those involved in the taskforce changed their minds, and that is an important point to make. In its second report, published in 2008, the taskforce did not recommend introducing an opt-out system. It felt that an opt-out system would have the potential to deliver benefits but, as my hon. Friend said, it would also present significant challenges that would need to be overcome. Instead, the taskforce believed then, and believes now, that a significant increase in donor rates can be achieved by acting on the recommendations in the first report.
The UK needs to maximise its potential for donation and make organ donation a usual part of health care. We still believe that the implementation of those recommendations will result in an increase in organ donation rates at least 50% by 2013, and that is still on track. Through NHS Blood and Transplant, the number of specialist nurses, clinical leads, donation committees and donation chairs in acute trusts have all increased, and that has borne considerable fruit—since 2008, an increase of 31%, up from 28% —those are the most recent figures.
Some studies suggest a link between presumed consent and higher donor rates, but closer examination shows the picture to be very much more complex—my hon. Friend the Member for Kettering (Mr Hollobone) was so right. Spain has been quoted at length. It has a donor rate of 32 per million of population, compared to the UK’s 16 per million. They have presumed consent, but the architect of the “Spanish model” has repeatedly stated that the legal basis of consent is irrelevant to organ donation. What is critical is the organ donation and retrieval system in place, with highly trained staff and a well-designed donation framework, supported by high public awareness of the issues and benefits. We need awareness and a conversation with our families. In practice, I doubt whether there is a surgeon anywhere who would take an organ from somebody without the consent of their family.
I am pleased to report that organ donor rates have increased by around 31% since 2008 and we are on track to meet the 50% improvement. On top of that, over 18 million people, some 29% of the United Kingdom population, have added their name to the organ donor register. In 2010-11, there was a record number of deceased organ donors—1,010 donors compared with 745 in 2001-02. That year also saw a record number of transplants from deceased and living owners—3,740 transplants were carried out in the UK, compared with 2,600-odd in 2001-02. However, despite the progress, there is still a shortage of organs and I am surprised that more has not been made of the inequalities that surround this issue.
The situation is very serious for people from African-Caribbean and Asian backgrounds, who are three to five times more likely to need a kidney transplant. Almost a quarter, 23%, of patients waiting for a kidney are from black or minority ethnic groups but they make up only 8% of the UK population. Three quarters of people from a BME background refuse organ donation when asked, compared with an average figure of 40%. There is particular and specific issue, which we need to address, but it is not insurmountable. We need more people from BME communities to register to donate their organs and, more widely, there needs to be a greater understanding in BME communities of the problems that they face—a greater need for kidney transplants, longer waits and less well-matched organs being donated for their communities.
We cannot be complacent and must carry on the work of the previous Government through schemes such as the give and let live initiative; requiring people to answer a question on organ donation when applying for a driving licence on-line; signing on the organ donor register when applying for a European health insurance card or a Boots advantage card; and specific initiatives within the black and minority ethnic populations, like working with faith organisations, radio stations, charities and community groups. What we really need is for people to sign up to having a conversation with their families. That is what really matters.
Work continues at every level on referring and procuring organ donors. We are also trying to make organ donation a usual part of end-of-life care. I hope hon. Members will think on that for a moment. When we think about making organ donation a part of end-of-life care, one realises what a complex, emotional and sensitive issue this. The hon. Member for Llanelli (Nia Griffith) mentioned families talking about this matter. That is so critical, so that when tragedy comes, the transition to donation is simple.
We have set up a transitional steering group, and it will focus on six key areas: increasing consent rates; brain stem death testing in all appropriate cases; donation after circulatory death to be considered in all circumstances; increasing donation from emergency medicine; referral of potential donors; and improving donor management.
I thank hon. Members for their thoughtful contributions. I know that this is an emotive issue that raises strong feelings. We need an evidence-based approach. I thank all those in this country who have donated the organs of family members in the midst of the turmoil of death. That death has and does give life to others—not just one person, but often two, three or four people. Nothing can ever relieve the burden of grief or loss, but nothing can replace the gift of life that organ donation represents. We have to use every tool at our disposal to increase those donation rates. We have to remind people, at every opportunity, that this is about a gift of life and in particular focus on those communities that are more disadvantaged than others.