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Organ Donation

Volume 535: debated on Wednesday 9 November 2011

It is an honour to serve under your stewardship, Mr Davies. We have half an hour in which to debate this issue, and I will try to be brief, because a number of hon. Members have told me that they may wish to intervene, and my hon. Friend the Member for Montgomeryshire (Glyn Davies) has said that he would like to speak in the debate. I have always found his contributions, whether here or in the House, valuable and I am sure that he will only enhance the debate, and give his personal perspective and the view from Wales.

Organ donation sounds far removed from most people’s lives. They have never considered it, or believe that it is something to consider later in life or when they are in need. We all know people who are waiting for donations and people who have received them. Perhaps the thought makes us uncomfortable, because it forces us to confront the reality of life and death, but we must not ignore the fact that more than 7,500 people are on a waiting list for a donor organ. Whatever the reasons and whatever the causes, profound changes in medicine have provided the ability to save people from illnesses with donated organs, but we are still grappling with a shortage of donors.

Although there are people on waiting lists, things are getting better. Since 2007-08, there has been a 26% increase in the number of people who have agreed to be organ donors after their death, and today there are 18 million donors on the NHS organ donor register, but we must hope for more. With many groups that work tirelessly to ensure that one day the waiting list will be short, I want to raise awareness throughout the country, and to change people’s perception so that being a registered donor will become the cultural norm.

I am here today because I do not believe that those improvements have gone far enough. I am worried that the target to increase the number of people who become organ donors after their death by 50% in 2012-13 will not be met unless the Government take urgent action. I am particularly worried that not enough progress has been made to increase organ donation in black and minority ethnic communities. People of black and minority ethnic origin are three to four times more likely to need an organ transplant, but are significantly under-represented on the NHS organ donor register. When asked, 75% of families of potential donors from BME communities refused to give consent for their loved one to become an organ donor. That must not continue. As a member of the BME community, as well as representing a seat with a large BME population, I know that we must continue to work hard to maintain a dialogue within those communities, and start to break down some of the stigma that organ donation may hold.

I congratulate my hon. Friend on securing this extremely important debate. My constituency has a BME community that is centred around one ward—Abbey—where life expectancy is 17 years lower than other parts of Warwickshire. I am sure that my constituents in that ward will be heartened to hear my hon. Friend’s comments, but does he agree that we need to raise the profile of these important issues, particularly organ donation and transplantation, as well as diabetes and so on, in those communities to try to deal with those health inequalities?

My hon. Friend makes a valuable point. I know how hard he works with the BME community in his constituency, and he is a champion of such issues. I have been heartened by most of my colleagues, who have shown a wide and passionate interest in specific concerns involving the BME community. He is right to highlight the issue.

I congratulate my hon. Friend on securing this debate. It is great that he is standing up for such an important issue, and for the BME community. The issue affects all hon. Members, whether their constituencies are urban, or rural like mine. I declare an interest in that I once thought I needed a kidney donation because I tore my left kidney in half at Stratford when I was a jockey. That was due to poor jockeyship, and a good doctor saved me. My question is simple. Does my hon. Friend believe that GPs could play a greater role in the community in stimulating more organ donation?

My hon. Friend makes an important point. This is a difficult issue, and the nub of the problem is that clinicians and individuals in our communities often find it difficult to talk about the matter and to face reality. I see no reason why it would be harmful if GPs spoke openly and candidly about it to people who attend their surgeries. They could highlight the matter, and spread the broader message among the broader populace about how vital the need is.

I congratulate my hon. Friend on securing this debate. Does he recognise the work of those calling for an opt-out system of organ donation, which includes national campaigns such as the British Heart Foundation, as well as local campaigners, including Valerie Paynter, who underwent a kidney transplant 20 years ago, which saved her life? Her story is very moving. Will my hon. Friend encourage hon. Members to sign my recently tabled early-day motion, although I appreciate that he does not sign them?

My hon. Friend is correct: I do not sign early-day motions. On the opt-out, we have made some progress, and we should continue on that route, but increase the pace. I have seen some of the research from various task forces. Some work in 2008 suggested that there was no substantive evidence that going down that route would increase organ donation. That is probably a matter for debate another time, but my personal opinion is that we must deal with it sequentially. Let us get to 2013, then see where we are.

If anyone is in any doubt about the desperate suffering at the moment, they should look at the evidence from my constituent, Matthew Lammas, and his family, who came to the House and talked about their six months of agony while he waited for an organ to become available. There were calls in the middle of the night, and drives of sometimes hundreds of miles with disappointment after disappointment. He came near to death, but finally and happily, he was given the heart that he needed, and he is surviving. Anyone who believes that the issue can be pushed aside should read about that family’s terrible suffering because of the lack of organs. For those who did not attend the meeting, the story is available on my blog. Unfortunately, another constituent died due to lack of an organ.

I thank the hon. Gentleman for his intervention. No one in the Chamber would in any way, shape or form underestimate the suffering of those who need a transplant. I am a trustee of a Sikh temple, and I have been approached specifically about the matter and people’s real concern about it. I have felt the pain that many families feel. We may leave the main thrust of the debate today, but I am sure that we will revisit the issue. I accept completely what the hon. Gentleman says, but for the time being we must go along the path of sequential progress.

I congratulate my hon. Friend on securing this debate. He highlighted very well the fact that organ donation in urban areas is much lower than in more rural areas. That is partly due to population churn, but also because, as he rightly highlights, it is difficult to persuade people in black and ethnic minority communities to come forward and agree to organ donation. There are some cultural barriers to organ donation. How can we break down those barriers and focus on what really matters—ensuring that people have a chance of life?

I thank my hon. Friend for his intervention. As I said, I am a trustee of a Sikh temple, and I think it is important that we continue to spread that message in mosques, gurdwaras, mundas and temples in any shape or form. It needs to be consensual. It is about breaking down stigmas and prejudices that may be out there in certain communities. I would be very much in favour of anything that does that, and I have personally done that in my own constituency.

I thank my hon. Friend for his generosity in giving way. Many colleagues are here for this passionate debate, so perhaps next time we should have a full hour and a half for such an important issue.

We have heard the statistics. In my part of the world, Yorkshire and Humber, 581 people are waiting for an organ transplant, and 41 have died while waiting in the period 2010-11. I received a letter yesterday from a young lad aged 11, Matthew Taylor from Salendine Nook high school, which is doing a project on organ donations and the opt-in, opt-out processes. Will my hon. Friend join me in congratulating Salendine high school on engaging with young people and thinking about the processes? We can debate having a soft opt-in or opt-out process, but it is great that schools are engaging young people to think about organ donation.

I absolutely agree. My hon. Friend makes a good point. It is important that we raise the issue. That is the function of today’s debate. I am sure that the Minister will respond to that as well. I want to allow time for my hon. Friend the Member for Montgomeryshire to make a speech, so I will try to be brief. I will practise the skill of cutting down a speech to a few minutes.

I am concerned that leadership on organ donation and transplantation might be lost and that that will jeopardise the improvements that have been made since 2008. The national clinical director for transplantation, who was overseeing the implementation of the Organ Donation Taskforce recommendations, has now retired and I understand that his post is not due to be replaced. The Organ Donation Taskforce programme delivery board, which supported him in that role, has been disbanded. There is clearly a risk that in the absence of clear leadership, the improvements to date may be lost. Will the Minister tell us who is driving the agenda on organ donation and transplantation in the Department of Health, and whether the Department remains committed to the 50% increase in donors from 2007-08? What additional steps does he plan to take to ensure that that is achieved?

There is also the question of the goalposts being moved slightly further away when we reach 2013. I am sure the Minister is aware that there is no strategy for organ donation and transplantation beyond 2013, by which point all the Organ Donation Taskforce recommendations should be implemented. Will the Department of Health produce a strategy to ensure that the number of organ donors and transplants continue to increase after that date?

Organ donation is a gift, and that fact should be the focus of all policies involving donation, but it would be remiss to ignore those who have given. In previous years, the Government have recognised the incredible gift that organ donors have given by welcoming their families to a reception in Downing street. I would wholeheartedly support a continuation of that tradition. We are having a reception here at the House in December. It will be hosted by the hon. Member for Derby North (Chris Williamson) in his role as chair of the all-party group on organ donation, and we would welcome the Minister’s attendance. I am sure he would enjoy meeting the families and thanking them for what they have done for others.

There are big goals in place for 2013. We are all committed to working so that we have more than 20 million people on the official donor register. As people elected to serve our constituents, we can do no more than set a good example in our own communities, so I will take a moment to encourage all MPs to ensure that they are registered organ donors. We would all like to leave a legacy, and there can be no better one than that of saving a life.

It is a pleasure to serve under your chairmanship for the first time, Mr Davies. I particularly want to thank my hon. Friend the Member for Wolverhampton South West (Paul Uppal) for raising an issue that is hugely important to many people. Increasing the number of organs available has become a passion of mine. The comments of the hon. Member for Newport West (Paul Flynn) made an impact on me. We all want to see an increase in the number of organs available for donation. We need to look at the evidence available and decide the best route to go down to achieve the increase. Over the years that I have been involved, one of the main issues looked at has been a change to opt out. We have to look at what happened in countries where they moved towards presumed consent from the position of informed consent.

As well as looking at international examples, it is important to look at the evidence of the taskforce set up by the previous Government in 2008. I have looked at the matter in detail. Spain is often quoted by people who favour presumed consent; it was their exemplar, until perhaps 12 months ago, when it became Belgium. Presumed consent was introduced in Spain in 1979, but nothing happened for 10 years. In 1989, a new law was passed in Spain, which introduced a comprehensive transplant co-ordination system throughout the country to raise awareness and understanding. That is what made the difference. From that date on, there was an increase such that Spain is now one of the best examples in the world for organ transplant.

I pay tribute to my hon. Friend for the work that he is doing in this area. Is he aware of the independent analysis of the model in Spain by our former colleagues in the Welsh Assembly? When they went to visit Spain, they were in favour of presumed consent at the outset, but they changed their minds by the time they came back. There is extremely effective evidence that can be contributed to the debate.

I thank my hon. Friend for that intervention. That is a point that I want to make. Nearly everybody wants to increase the number of organs available, but we must be careful to look at the evidence to ensure we do not introduce changes that will hinder that. I have read the taskforce’s careful evidence. The Prime Minister of the day said that he wanted to move down this road. Members of the taskforce tended to be supportive of that move at the start, but by the end they unanimously said it was dangerous to move in that direction and that there was a real danger of it reducing the number of organs available.

We must be incredibly careful. I welcome this debate—and indeed the debate taking place in Wales, which started yesterday—because it raises awareness of the issue. Family members will know what the wishes of the deceased were and they will be able to give permission without there being a statutory register. There is no such register in Spain—or at least hardly anyone joins it. The family must know. As long as we raise awareness and understanding of what is involved and have people who can speak to those in a difficult position—because someone has just died, or a machine is about to be turned off—in an understanding way, it will encourage the nation. If we go down that road, I think we will produce the extra organs that we need.

I know time is short, Mr Davies, so I will be brief. I want to draw the Minister’s attention to the Sign Up, Speak Up, Save Lives campaign, which is currently featuring in Channel 4’s youth engagement “Battlefront” programme. I am grateful that the Under-Secretary of State for Health, the hon. Member for Guildford (Anne Milton), has agreed to meet me and Abby and Hope, the young women campaigning to increase the number of people registered on the organ donor register. Given the arguments made in the previous speech, I want to draw everyone’s attention to an alternative suggestion that I have been advocating with Abby and Hope, which is that we use the opportunity afforded by the introduction of individual electoral registration during this Parliament to give all adults the opportunity to join the organ donor register at the same time as they are asked to register to vote.

From the evidence I have seen, it is clear to me that the welcome news about the reduction in fatalities on our roads means that there is a particular need for us to attract young, healthy adults on to the organ donor register. If people get the opportunity to do that with the paperwork that they complete when they join the electoral register, that will be helpful in meeting the objective, which we all share, of encouraging more people to register as organ donors.

I congratulate the hon. Member for Wolverhampton South West (Paul Uppal) on securing this debate, and on squeezing so much in. There were so many interventions that it felt almost as if a 90-minute debate had been fast-forwarded to include everything. I appreciate his approach, and the substantive contributions that we have heard during the short time in which we have debated this important issue. Transplantation is one of medicine’s great success stories, and I know that the hon. Gentleman has taken a keen interest in the subject for a considerable time. He is right to hold the Government’s feet to the fire when it comes to ensuring that we maintain progress in such an important area.

The coalition Government are absolutely committed to increasing the number of organs available for transplantation, and we believe that as many people as possible who need a replacement organ should be given the opportunity to benefit from a transplant. In many ways, the success of transplantation surgery and advances in technology have led to the current challenges of unmet need that have been described so powerfully and with personal examples.

Some 10,000 individuals now require a transplant, and tragically about three adults or children die every day either waiting for a transplant or after being taken off the list because they have become too ill. The hon. Member for Newport West (Paul Flynn) mentioned a blog that details the suffering and misery endured by families while they wait for a transplant, and that speaks volumes about why we must do more work in that area.

The Organ Donation Taskforce’s recommendations, published in its first report, “Organs for transplants”, in January 2008, were broadly based around the need for investment in the donation infrastructure. That is to ensure that the UK maximises its potential for donation rates, and makes organ donation a usual part of health care.

The Welsh Government’s recently published White Paper on organ donation has been referred to, and we will study their proposals carefully. In 2008, however, the independent Organ Donation Taskforce also examined the case for moving to an opt-out system but recommended against it, concluding that, although such a system might have the potential to deliver benefits, it would also present significant difficulties.

My hon. Friend the Member for Montgomeryshire (Glyn Davies) rightly drew attention to Spain, and the fact that, despite the enactment of a similar opt-out scheme in 1979, a significant transformation in the level of performance took place only after investment in infrastructure in 1989. The taskforce has drawn lessons from the Spanish experience, and it is right that we are guided by evidence.

I was asked about the taskforce’s intention that we achieve a rate of organ donation of at least 50% by 2013. That is certainly our aim, and we are on track to deliver it. Significant resources have been made available to implement the taskforce’s recommendations—largely through NHS Blood and Transplant—to increase the number of specialist nurses, who are a critical part of the system, and to appoint clinical leads, donation committees and donation chairs in acute trusts to drive improvement locally.

As the Minister will be aware, in 1994, there were 2,500 people on the organ donor waiting list, and last year there were over 7,500. Only 29% of the UK population are signed up to organ donation, which is woefully inadequate given that 552 people died last year while waiting for an organ transplant, excluding those who were taken off the list because they had become too unwell. It is a big problem; people are living longer, sometimes with multiple medical co-morbidities, which means that more people will need transplants. The problem will become an increasing challenge for health care providers and the Government.

Philosophically, I agree with the Minister and I am not in favour of compulsion. Does he agree, however, that we need a more targeted community-focused approach and, as with the cot death campaign that reduced cot deaths from 2,000 to about 300—

The hon. Gentleman advances an important point. We cannot tackle the issue from the top down; it requires leadership from the bottom up in local communities. That is why NHS Blood and Transplant’s website provides constituency-level information about the number of people on the register, the number of transplants that have taken place, and the number of people waiting for a transplant. That information is invaluable to us as MPs and leaders in our local communities, and we should work with others in our community to break down some of the barriers of misunderstanding and misconception that were referred to by the hon. Member for Wolverhampton South West.

We have seen an increase in the number of organ donors by around 28% since 2008, and we are on track to meet the 50% improvement by 2013 set by the taskforce. As the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) said, 29% of the UK population are on the organ donor register, and it is interesting to note how levels of registration change from one constituency to another—I urge hon. Members to look at that. The number of deceased organ donations rose to 1,010 in 2010-11, compared with 745 in 2001-02. The year 2010-11 also saw a record number of transplants from deceased and living donors, with 3,740 transplants carried out in the UK, compared with 2,633 in 2001-02.

Despite the considerable progress made over the past few years, however, there is still a shortage of organs donated for transplant. The situation is particularly serious for people from African-Caribbean and Asian backgrounds, because they are three to five times more likely to need a kidney transplant than white people. That is why we cannot be complacent, and we will continue to work with partner organisations to promote donations. That can be done through the Give and Let Live initiative in schools, where new information about the issue is circulated by NHS Blood and Transplant; by requiring people to answer a question about organ donation when applying for a driving licence; or by asking people to sign the organ donor register when applying for a European health insurance card and so on. The African-Caribbean Leukaemia Trust seeks to raise the importance of organ donation in black and minority ethnic communities, and local leadership is a key ingredient in delivering improvement.

Through various public awareness campaigns, NHS Blood and Transplant also publicises the need for more people to register as donors. Work continues at national, regional and local levels further to strengthen the donation programme, to support the excellent work of the NHS in identifying, referring and procuring donor organs, and to make organ donation a usual part of end-of-life care.

I am grateful for the opportunity to reassure all hon. Members in the debate that, as we modernise the NHS, we will continue to focus on driving forward an improvement in donation rates. To maintain that momentum, with the support of all UK health administrations, we have established a transitional steering group that includes health departments, NHS Blood and Transplant, the British Transplantation Society, and the royal colleges. It aims to focus on actions that will continue to embed donation within end-of-life care, and provide a link between oversight of the programme delivery board and the establishment of the NHS commissioning board in 2013. It will also provide a clear link to Health Ministers for any reports on progress.

The transitional steering group 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; increased donation from emergency medicine; increased and more timely referral of potential donors; and improved donor management. The work of the transitional steering group will continue to drive improvements in the UK’s organ donation programme, and increase donation rates.

The hon. Member for Wolverhampton South West asked about leadership, which is an essential issue. The national clinical director for transplantation, Chris Rudge, has recently retired from that role, although I confirm that he will be appointed as leader of the transitional group, which will provide continuity of leadership. I hope that that reassures the hon. Gentleman, and others, about the Government’s serious intent to deliver on the important target. I can also inform the hon. Gentleman that we will not wait until 2013 to look at what should happen next, and we have already begun to develop a post-2013 strategy. NHS Blood and Transplant is starting to prepare the relevant documents, and is working closely with the transitional steering group.

This has been an incredibly important debate and significant points have been raised. I hope I have demonstrated that, in terms of leadership, intent and drive, we are committed to building on the improvements we have already seen and, where appropriate, to learn lessons from other parts of the world. That will require us all to play our part in raising awareness of organ donation, and of what the consequences for people’s lives will be if donations are not made.

As the hon. Member for Wolverhampton South West said, donation is a precious gift. We need more people to realise that and give such a gift by putting their name on the register and being willing to donate.

Sitting suspended.