We need your support to keep TheyWorkForYou running and make sure people across the UK can continue to hold their elected representatives to account.

Donate to our crowdfunder

Organ Donation (Presumed Consent) Bill

Prayers – in the House of Commons at 1:09 pm on 13th March 2009.

Alert me about debates like this

Second Reading

Watch this
Embed this video

Copy and paste this code on your website

Hide

B

As a heart transplant...

Submitted by Bob Aronson Continue reading

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury) 1:24 pm, 13th March 2009

I beg to move, That the Bill be now read a Second time.

May I start by paying tribute to my constituent, Sean O'Brien, and his wife, Samantha, who I am pleased are able to be present in person for the debate today, as it was Sean O'Brien's initial intervention in bringing this matter to my attention that inspired me to introduce the Bill? He suffers from a liver cancer affliction and is in need of a transplant. Therefore, like many thousands of people in the country, he has a direct stake in this legislation and how the Government tackle the issue.

I would also like to pay tribute to another constituent of mine, Gill Stapleton-Smith, who has been very helpful in providing me with an insight of how people live when they are afflicted by a serious organ problem and in need of a transplant. She received a new kidney, and that had a transformative effect on her, and enabled her to go back to work and contribute to society. That enhanced her quality of life, and that of her wider family.

I propose to divide my speech into three sections. First, I shall explain the problem I am seeking to address. Secondly, I shall explain the essence of the Bill and what effect it will have. Thirdly, as I know that several Members have concerns about some of the implications arising from the legislation, I intend to address those concerns and see if I can reassure any Members who might be minded to oppose the Bill.

What is the problem that I am seeking to address? At present, about 8,000 people in the UK are on the organ donor list awaiting an organ transplant. That figure is rising at a faster rate than the numbers of people who either receive a transplant or, sadly, die before they are able to receive one, so the number of people on the waiting list is increasing. Approximately 1,000 people in the UK die every year waiting for an organ transplant because a suitable organ does not come up in time to save them. The terms of the Bill therefore represent a pressing issue for those people and their families and friends.

Under the current system, all of us are free to decide to donate our organs, and about a quarter of the people in the country—26 per cent.—have opted to do so: they are on the organ donor register and, in the event of their dying unexpectedly, their organs could be used to help somebody in need. However, the number of people who say they would be willing to countenance having their organs used is about 90 per cent. Therefore, at present a quarter of the population have signed the register, yet 90 per cent. say they have no objection in principle to their organs being used. I seek to address that sizeable gap, which represents those people who, for whatever reason, have decided not to put themselves on the list and yet are agreeable to the principle of doing so.

I have encountered precisely that situation, because—I am slightly embarrassed to admit it—before I met my constituent, Sean O'Brien, I was not on the list. People can find themselves in that situation for a variety of reasons: it might be to do with laziness, or a feeling of, "It will never happen to me in any case", or an element of superstition might be in play. If it achieves nothing else, I hope my Bill will help raise sufficient awareness for that gap between 26 per cent. and 90 per cent. to be bridged.

Watch this

Photo of Brian Iddon Brian Iddon Labour, Bolton South East

I congratulate the hon. Gentleman on introducing the Bill, but is he aware that 40 per cent. of people on the kidney and liver transplant waiting lists are from the black and Asian communities, and Asian people have to wait twice as long as other people for an organ transplant, yet only 3 per cent. of the people on the organ donor registers are Asian? Will the hon. Gentleman congratulate Komal Adris and Shabbir Lorgat for mounting their organ donor campaign in this place on 12 January 2009, with the specific intention of persuading more people from the black and minority ethnic communities to donate organs?

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I certainly will, because I am delighted that they are campaigning on that issue. I do not claim particular medical expertise, but I must say that there are some genetic predispositions to which people of different ethnicities are more prone and we need to ensure that the maximum number of people donate to the list, if that is what they wish to do and if, in the event of their dying unexpectedly, they are in a position to help somebody.

Watch this

Photo of Simon Hughes Simon Hughes Shadow Secretary of State for Energy and Climate Change

My hon. Friend Mr. Browne, like my hon. Friend Lorely Burt, is a keen supporter of the Bill. I represent Guy's hospital, which has a huge tradition of renal surgery, and I have met many kidney patients awaiting transplants. Does he accept that for hon. Members such as me, it is difficult to explain the situation to those people, given the frustration of knowing that they could be dealt with much more quickly if many more kidneys were available? Looked at from the position of those families, many of whom I have seen over the years, this Bill is exactly the sort of step that this country ought to be bold enough to take.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I am grateful for that intervention, because I strongly agree with it. When I met Gill Stapleton-Smith, who has had exactly that transplant, she not only told me that it had saved her life, but she described her quality of life and the impact that the transplant had had on not just her, but all those around her. She now works at Musgrove Park hospital, which is the main hospital in Taunton, saving the lives of, and helping, other people and making a meaningful contribution to our community, including through paying her taxes—she helps out in that financial way. She also said that the stress her illness had caused her children and the rest of her family had now been removed. If anyone in this House were to meet her, they would be struck, as I was, by just how fit, energetic and vibrant she is.

That takes me on to an interesting point, which I was going to make in passing but I should make now because it is relevant to our deliberations. Some 90 per cent. of people say that they would be willing to donate their organs but only 26 per cent. are on the organ donor list. The figure I have been unable to find is the number who say that they would like to receive an organ were they in a position where if they did not receive a transplant, they would die—I suspect that that figure is considerably higher than the 26 per cent. of people who are voluntarily putting their names forward. This deliberation contains a large element of quid pro quo; there is a reciprocal nature to the debate. It is not just about the individual choice of the people choosing to donate their organs, because it also involves the choice of the people who need the transplants and have the surgery that they would otherwise not receive. We are trying to balance all kinds of important competing criteria. That is the problem that I am trying to address.

I turn to what my short Bill—it is only a couple of pages long, so it is easy for everyone to read and digest—seeks to achieve. Its essence is extremely simple: instead of having the current opt-in register in the United Kingdom, there would be an opt-out register. There would a presumption that people's organs would be available for transplant unless they specified that that was not what they wanted. Just as in the current arrangements, where one can also choose to give only certain organs, people would be able to opt out of giving some organs and not others or to opt out altogether. Some people have been slightly cynical about this. I received a letter from somebody—they were clearly untrusting of policitians—who said that they did not doubt for a moment that all of these barriers to opting out would be extremely difficult and cumbersome. I wrote back to him saying that that was not my intention. I want to make it as easy for people to opt out as possible. Furthermore, the Bill puts additional safeguards in place, for example, if someone had not decided to opt out during their lifetime, but their parents or next of kin felt strongly that that would have been their wish, they would have the ability to override other considerations. I am not just trying to get the opt-out figure as low as possible: I want to ensure that anybody who has reservations, whether for ethical, religious or superstitious reasons, can opt out easily. I do not want to coerce anyone into doing something that they do not want to do.

There is widespread support for my proposals. The chief medical officer, Liam Donaldson, has said:

"To meet the current demand for organs, the number of people on the NHS donor register would need to approximately treble. I believe we can only do this through changing the legislation to an opt-out system with proper regulation and safeguards."

That is precisely what I am trying to do, and I hope that the regulation and safeguards will reassure those who would otherwise be anxious about the Bill.

The British Medical Association has also been supportive. It has said:

"The BMA believes that genuine choice over organ donation can be facilitated through a soft system of presumed consent whereby adults—who have been well informed of the options—can choose to opt out of organ donation during their lifetime, rather than having to opt into donation, as is the status quo."

Such measures have also received considerable high level political support. Mr. Clarke has said—although, admittedly, it was in 2004—

"We have the worst record of any part of western Europe and this weakness in our law should be addressed...presumed consent can be operated in a perfectly sensitive way."

We now have a higher percentage on the organ donor list than in 2004, but the right hon. and learned Gentleman—a distinguished Member of Parliament—was willing to support the principle of presumed consent then. Indeed, the most senior Member of Parliament—the Prime Minister—has indicated support for the principles behind the Bill. He said in November 2008:

"I'm not ruling out a further change in the law. We will revisit this when we find out how successful the next stage of the campaign has been."

I am delighted to have the support of Members from all parties.

Such legislation has been proposed before. My short Bill is modelled on such legislation with a couple of significant changes that I should point out. The last time that the House discussed this measure, the age of application was 16, and I have changed it to 18. We can discuss the appropriate age, but I believe that while 16 and 17-year-olds should be able to opt in, the presumption of consent should not apply to those under the age of adulthood.

Watch this

Photo of Laura Moffatt Laura Moffatt Labour, Crawley

I am glad that the hon. Gentleman has made this change. Does he agree that parents may be thrown into utter turmoil and confusion if their child is lying in a bed waiting for their organs to be taken for transplant? It is right to increase the age to 18.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

That was my instinct, and I am grateful for the hon. Lady's support.

The other change, which came out of my meeting with the BMA, was that the period between the Bill becoming law and taking effect should be three years. In previous attempts, it was six months. I am sure that those people who are enthusiastic about the measure would prefer the time scale to be shorter, but the BMA made the point that it is not easy to go from a system under which 26 per cent. of organs are available for donation to one in which 90 per cent. are available in a very short time. An educational process is necessary to inform the population, and there are also practical issues such as the availability of facilities in hospitals. A three-year timetable would therefore be more appropriate. I would hope that during that three-year period we would see more people opting in as awareness of the issue increased—in fact, I think that that is inevitable.

Watch this

Photo of Christopher Chope Christopher Chope Conservative, Christchurch

The hon. Gentleman talks about the register, and his Bill refers to "persons". It does not specify that they have to be UK nationals. What protection would there be for foreign visitors to this country or illegal migrants whose identity was not known to the authorities? They would not wish to feature on the register, but because they were not on it their organs could be used in the way that his Bill suggests.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I am grateful to the hon. Gentleman for that intervention, because of the three issues I wanted to speak about. The first was the problem, which I have dealt with; the second was the Bill, which I have tried to explain as best I can; and the third, which I was just coming to and to which his point neatly leads me, was some of the concerns that have been expressed to me.

I want to attempt to allay some of those concerns. The hon. Gentleman's point was one of the concerns expressed. It leads into an interesting and perhaps separate discussion, because it could apply equally to wider access to NHS services such as blood transfusions and so on. The nature of the arrangement, however, is that there should be an element of quid pro quo. If I put my organs up as being available for donation, I would hope that if I needed organs I would receive them. I would be happiest if this were a system that applied to UK nationals and which was administered by the national health service. I know that a lot of people would be very uncomfortable if they thought that their organs would be sold, for example, as that would breach their moral trust in the system. It will be interesting to hear what the Minister has to say on this point, because it can be widened to cover access to drugs in the NHS and other areas. It is not unique to this field.

Watch this

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health)

The hon. Gentleman will be aware that the question of the number of transplants that are finding their way into non-EU nationals has been topical over recent days. He said that there was an element of quid pro quo and I want to ensure that we are referring to the right things. There has been a finding that more than 800 organs are going into non-EU nationals, but close to 100 are coming as part of the quid pro quo. The situation is clearly asymmetric and out of balance, and I am glad to see that after the campaign that has taken place, which I have had something to do with, the Government are holding an inquiry. That is an important point regarding confidence and trust.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I think that we have general agreement on that principle.

Watch this

Photo of Andrew Dismore Andrew Dismore Labour, Hendon

I have read the hon. Gentleman's Bill very carefully and I support it. I have carried a donor card for nearly 25 years, and whether it is right or wrong to do so, to get over the problem that is being described I have written on it, "NHS patients only". That is my personal preference. However, the question I want to put to him concerns the fact that his Bill deals with organs. Has he considered the position of other tissue that might be used, such as bone tissue, which is dealt with in the tissue bank in my constituency?

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

Inevitably, the Bill could have a wider scope and, of course, there are new fields of scientific research that make it more useful to have different parts of the body available for treatments that would not have been available in the past. The Bill is fairly narrowly drawn and its scope is confined to the organ checklist that one can opt into at the moment—the organs that one can choose to donate if one does not want to donate the entire list.

I want to divide the concerns that have been expressed to me into two groups: practical and ideological concerns. Let me skip quickly through the practical concerns—I might not have them all—to ensure that people appreciate that they have been considered. The first is the question whether the measure will compromise the relationship between the patient whose organs will be taken from them after their death and the doctor. A number of people have asked me whether the patient will be sufficiently confident that the doctor has his or her best interests at heart. I put that question directly to the BMA, which was adamant that that would not be a practical concern and that the processes for deciding who is a suitable donor and who is a suitable recipient work separately in the NHS. The idea can be that two people would be lying at opposite ends of a ward with one donating directly to the other, and that the doctor would have to make some sort of judgment about which was the more worthy person to have the organ, but that situation would never arise in practice. I have never worked in a hospital, but the BMA is adamant on that point, so I was reassured by the description of the procedures that would apply.

A second concern is that it would be administratively difficult to make a transition to the arrangements, which is precisely why I have provided for a three-year time scale rather than the six months specified in previous attempts to introduce similar legislation. I recognise the administrative difficulty and I have tried to change the measure accordingly.

A third concern is cost. All changes have cost implications, but the implications would not be particularly dramatic for my Bill, although it is hard to be certain about them because we cannot be certain how many people would choose to opt out. I imagine that fewer people would choose to opt out than currently opt in, so the number of names on the register could be smaller. Although there would obviously be cost implications in transferring and holding the additional number of organs available, a number of people have pointed out that the cost of drugs for people who languish on the list for a donated organ but cannot receive one is far greater than the cost of carrying out a transplant. As I said when citing the example relating to my constituent, if the person can be put back into productive life, there are all kinds of cost benefits.

Watch this

Photo of Lorely Burt Lorely Burt Shadow Minister (Business, Innovation and Skills), Chair of the Liberal Democrat Parliamentary Party

I was just about to make that point. It is important to take all the costs into account. We can never quantify the cost of quality of life for people who have been in pain and suffering for a long time, but the Bill makes a great deal of sense simply in terms of economics and I congratulate my hon. Friend on introducing it today.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I am grateful to my hon. Friend for that intervention.

The final practical concern that has been put to me was whether there would be sufficient ease in opting out. I hope that I have already addressed that point, because I have bent over backwards to try to make the safeguards as large as I can. If there is a criticism to be made of my Bill, it is probably that the safeguards are too widely drawn, such that some people who died unexpectedly would have been willing to donate but their parents or next of kin decided otherwise. I do not accept that the safeguards are too narrowly drawn; they are as wide as I can possibly make them, to reassure as many people as possible.

Those are the practical concerns. The ideological concern is expressed to me far more often by Members of Parliament than by members of the public. There is nothing inherently wrong with that; Members of Parliament tend to think in more political and ideological terms—that is often the nature of politics. MPs have expressed concern that the measure is tantamount to the state requisitioning our bodies. Many Members have told me somewhat airily and dismissively, "Oh, you've got that presumed consent Bill; I'm against that", and gone on their way without, I fear, engaging in the logic of their argument as much as I would wish.

I have quite libertarian instincts. If people look at my voting record since I came into the House four years ago, they will see that my votes tend to conform to a fairly libertarian perspective. I have an innate suspicion of the state wielding excessive power, so given those instincts, why have I come to the conclusion that I am comfortable—indeed, enthusiastic—about the Bill? I think the reason is that the subject is in a different category from some of our other debates where there is a divide between MPs of more libertarian or more authoritarian tendencies.

There is inevitably a reciprocal element in our deliberations. We talked about blood donation earlier. Everybody is free not to give blood, but the implication of that is that if we need blood for treatment, none will be available. There is an obvious mismatch between what people with busy lives, who may have other pressures on their time, are willing to put themselves forward for, and what they would like to be in a position to receive if they suddenly found themselves severely medically compromised. On how we can try to bridge the gap between how people behave when they do not anticipate being unwell, and the treatment that they need when they are unwell, there is a responsibility to the people who are on the list, waiting, but who did not necessarily give the issue much consideration when they were healthy. I think that Conservative Members are keen on what is called nudge theory, the theory that one does not compel people to make decisions—that is too authoritarian—but nudges or encourages them to go along a certain route, and tries to make it easier for them to take the position that one would like them to assume. However, one gives them the option of not doing so. That is essentially what I am trying to achieve.

If I were in a road accident on the way home today, and I was unconscious and bleeding heavily, I assume that the paramedics—if they arrived in time—would seek to treat me without first acquiring my assent, and asking whether I had opted in to treatment. The presumption would be that I would wish to be treated. It is the same with inoculations. I remember having all kinds of inoculations when I was a child. There has been some controversy about the new human papilloma virus vaccine, which is being introduced for 12 and 13-year-old girls. I understand that there is the choice to opt out of those measures, but the presumption is that people will be treated and that there is a broad benefit to being included. Nevertheless, there is scope for parents to opt out on the girl's behalf.

The same is true of blood transfusions. Some people, such as Jehovah's Witnesses, have expressed opposition to receiving blood transfusions. There have been notable cases in the past in which parents have sought to prevent doctors from giving a blood transfusion to their child for religious or ethical reasons, and the courts have overruled the decision of the parent and decided that it was in the interests of the child to receive the transfusion, even though there was religious hostility to that.

I suppose that the point I am trying to make is that we are talking about a complicated subject; it is not as straightforward as the right to free speech, say, or issues such as smoking bans, which have been discussed in Parliament. There is a reciprocal nature to health care, and that is very obvious when it comes to organ donation.

Watch this

Photo of Christopher Chope Christopher Chope Conservative, Christchurch

Ought not the essence to be the right to choose? Surely it should be possible for a person to specify that they are willing to give their organs, provided that it is to a member of their own family?

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

I am being tempted down a slight side path. I wish to conclude shortly, but I point out that there are difficulties. Of course, there are examples of people giving a kidney to their spouse or brother, because they themselves can function without one, but obviously it is easy to exercise that choice when one is living and in good health. There are some difficulties with organs being allocated only to certain people, because one may get into difficult ethical issues. What if a person is willing to donate a liver only if it is not used for somebody who has been an alcoholic, or, more controversially still, willing to donate an organ only if it goes to someone of a specified ethnicity and unwilling to give it to someone of a different ethnicity from theirs? We will get involved in a lot of difficult moral judgments. In the example that I just gave, the doctor might presume that medically, the best beneficiary of the organ was someone of a different ethnicity from that specified by the donor. Although I am tempted by the point that the hon. Gentleman makes, because it does, on the face of it, look reasonable, I fear that it will open up all kinds of unanticipated difficulties.

In conclusion, I am in favour of choice. Most opinion polls show that 90 per cent. of people—I think that the figure is generally accepted—would like their organs to be used if they died unexpectedly and prematurely. I would like that choice to be reflected in what actually happens. At the moment, it is often the case that when something terrible happens to that person, what would have been their wish had they been alive is not exercised because they never got around to putting themselves on the register in the first place. I want to ensure that the choices of people who do not wish to donate are completely respected and that it is easy for them to exercise that choice and opt out.

Ultimately my test is this: we can have protracted ideological discussions, and I have no problem with that because there are important issues to consider, but it is incumbent on all of us to say what we would do if confronted by a constituent, or anyone else, who said to us, "I have months or weeks to live unless I receive a new organ. At the moment, 1,000 people a year are dying in the United Kingdom because they do not receive an organ. What are you as a Member of Parliament doing to ensure that I have a chance of staying alive at a time when lots of perfectly useable organs are being discarded because we did not take the time or trouble before someone's death to ascertain whether they would be willing to have their organ used for a transplant?"

When meeting a constituent or any other person in those circumstances, it is hard to give them a convoluted ideological answer, and they would see it as entirely reasonable and sensible if we went for a properly administered presumed consent opt-out scheme. It would be widely accepted very quickly and it would be in the interests of the country as a whole, particularly those who are gravely ill at the moment. Who knows whether in two, three, four or five years from now we may be in that position ourselves? Think how pleased we would be that we gave the Bill a Second Reading this afternoon.

Watch this

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health) 1:56 pm, 13th March 2009

I start by congratulating Mr. Browne not only on selecting this subject for a private Member's Bill, but on putting his case in a reasonable and measured way while seeking to cover the points on the minds of all those considering the matter in this House and beyond. I declare that I am on the organ donation register—hopefully, along with most of my colleagues—and have been since 1986. I still have my card from that time; I seem to recall that it replaced what was then known as the kidney donor card, which I had no problem getting well below the age of 18. I had my first card when I was 14 in 1971, but that is going back a long while.

To discuss organ donation is literally to discuss life and death. We must recognise that, and I am sure the whole House will join me in paying tribute to all those who are donors, whether of blood, plasma or bone marrow, and all those on the organ donation register— 15.8 million people, according to NHS Blood and Transplant. I am glad to note that it was my right hon. Friend Sir George Young who, in his first debate in the House after he was elected in 1979, sought to move forward the donor campaign. We must pay tribute not only to all those who have given up their organs in death so that others might live, but to their friends and families who, in their moment of grief, were prepared to take or support that step.

When contemplating those who have not, for whatever reason, registered for organ donation—and the hon. Member for Taunton mentioned this—I would say that it is probably not a matter of laziness, although there is certainly a lack of knowledge and education on the part of some. Often, people are worried not so much about themselves, but about the turmoil for those they leave behind, and whether it would be an extra stress for them to face the idea of their loved one's body having an organ taken from it. When talking to those who have been through this process, we find that some families, oddly enough, found the process helpful because the fact that their loved one was useful to the future life of someone else gave them a focus. Although that would not apply to all, it is useful to bear it in mind when seeking to persuade people that they ought to consider being on the organ donation register.

Although all hon. Members no doubt hold strong opinions on this issue and will seek to hold the Government to account, as we do all the time, I have no doubt that in our minds the debate will be underpinned by the selfless acts of hundreds of people across the country. Many of us will remember the first heart transplant, performed by Dr. Christiaan Barnard in South Africa in 1967. It is one of my first memories of news on TV, along with Churchill's funeral and the first man stepping on the moon, all during the pioneering days of the late 1960s.

As of today, 7,981 people are waiting for transplants, but only about 3,000 transplants are carried out each year. Tragically, that leads to more than 1,000 people a year dying for want of a transplant. The chief medical officer has stated that others are dying silently because doctors who know that there is no hope of their getting treatment are not putting them on transplant waiting lists. In Britain we have about 13 donors per 1 million people in our population. Spain is the best in the world in that regard, with 35 per million.

As hon. Members will know, this issue was last raised in legislative terms during the passage of the Human Tissue Act 2004, with Dr. Harris pushing for a system of presumed consent. Then, as now, the issue was one of conscience. It is therefore free vote territory for the Opposition and, I believe, for all parties. As the Conservative spokesman on health, and on this matter in particular, I emphasise that my words today do not constitute a party line. I believe that that is also true of the words of the hon. Member for Taunton, although I know that he has been able to attract the support of some of his colleagues. Hon. Members will know how they voted in 2004. For my part, I voted against introducing a system of presumed consent, as did the current Prime Minister.

We were also able to debate the matter in a Westminster Hall debate on a motion to adjourn on 20 November last year. That provided an opportunity to debate the Organ Donation Taskforce's report on presumed consent. The taskforce was commissioned by the Prime Minister in January to look into the matter, following his apparent damascene conversion. In his homiletic article in T he Sunday Telegraph of 13 January, he wrote:

"I want to start a genuine debate".

He also suggested that a move to presumed consent would make us a "more compassionate Britain".

Irrespective of the change of mind that anyone might have had, it was right that the matter be referred to an expert panel—the better for being a panel that was focused on evidence rather than framing any judgment, moral or otherwise. At the time I paid tribute to Elisabeth Buggins and her team for the thorough and thoughtful process that they had undertaken. It was refreshing to see a progression of thinking in the report from a group with disparate views to broad consensus.

Watch this

Photo of Brian Iddon Brian Iddon Labour, Bolton South East

Does the hon. Gentleman find it surprising, as I do, that this Parliament, unlike many others, does not have a parliamentary bioethical Committee?

Watch this

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health)

That is a very interesting point. Such a Committee would most appropriately be considered for the other place. Committees in this House tend to shadow Government Departments, whereas the other place has a fine tradition of taking a discrete subject and bringing a great deal of expertise to it. I suspect that the hon. Gentleman's point, which is well made, should be heard in that forum.

On the taskforce, not only were the views disparate, but it was originally disposed in favour of presumed consent. Some even suggested a touch of gerrymandering —I did not, and far be it from me to do so. Even Michael White, writing in The Guardian, stated that members of the panel had been picked because:

"Ministers had been assured that a majority of its members" at the time of its constitution favoured presumed consent. In paragraph 2.7 of its report, the taskforce crystallised its task as seeking to

"check whether the intuitive answer"— presumed consent—

"is, in fact, correct."

We cannot escape the fact that this subject touches on people's notions of what is appropriate in death and on the sanctity and ownership of our bodies, through either any form of living will before death or next of kin after death. The primary hurdle to overcome before legislating is the existence of evidence that any change in the law would lead to an increase in organ transplants and universal access to them across the country. There is no evidence to suggest that. True, the taskforce did not completely write off presumed consent. It noted that it "may deliver real benefit", but its stronger concern was that it

"carries a significant risk of making the current situation worse."

In other words, the taskforce ultimately opposed the move to presumed consent at this stage. I submit that that was an important, objective report and a good basis on which to build policies and a direction for the future.

Equally, it is worth noting that the report of the Organ Donation Taskforce says that clinicians from intensive care, where the majority of deaths leading to donation occur, are in the forefront of opposing presumed consent, while according to the Intensive Care Society, they are pretty evenly split on the question. Those who oppose it do so vehemently. In the words of the report,

"the strength of feeling among those who are opposed is considerable".

This is in contrast to the cry of doctors' leaders such as those at the British Medical Association, who continue to push the presumed consent model in the face of evidence from their members. Any movement on the presumed consent question will have to be predicated on the satisfaction of these front-line intensive care professionals with the protection of their patients and the work that they do—in particular, preserving patient trust as regards fears of the temptation to "harvest" organs. In that context, it is hard to see how hon. Members supporting the Bill can justify their position; rather, it seems incumbent on the Government to take forward the measures that they have promised. I will leave it to the Minister to touch on those rather than do so myself.

I should quickly deal with the experience in Spain. It is worth noting that although Spain is often prayed in aid for presumed consent, in truth transplant surgery is so widespread in so many categories that prior consent of the individual or next of kin is established without the presumption of consent needing to be relied upon. The question therefore becomes whether presumed consent is the best way of educating a populace about organ donation and convincing them that it is the right thing to do. The architect of the Spanish system, Professor Rafael Matesanz, has explicitly rejected the argument that legislation provides a solution, saying:

"There is no country in the world where there has been sustained improvement after changing the law."

Instead, he argues that the comprehensive transplant programme accounts for their success. In Spain, it is also extremely well done in lots of local areas, so it is not all to do with long distances and a lack of ownership, as it were. Spain changed the law to introduce its opt-out scheme in 1979; however, it had no impact until 10 years later, when the Spanish Government invested in specific training for health care professionals, appointing donor transplant co-ordinators in every intensive care unit.

Another opt-out country, Sweden, has fewer organs available for donation than Britain. Equally, the USA has achieved an impressive increase in donor numbers at the same time as rejecting any legislative move towards presumed consent. If the experts cannot produce evidence that this will increase transplants, there is no case to change the law, and we should focus on increasing education and capacity. There is an opportunity for the Government, as they take forward the results of the report, to focus on those as the dynamic way forward that is most likely to increase the amount of take-up in the donor population in our country.

In an intervention on the hon. Member for Taunton, I referred to organs going to people living outside the UK: there have been 800 since 1997, with only 140 having been "imported". I am pleased that after the application of significant pressure, in which I have been involved, the Government are now investigating that. It is a moot point for debate, particularly as we have so many wise heads considering this issue. There are not many Members in the Chamber at the moment, but those who are here care deeply about this issue: we saw that in the intervention by Mr. Dismore who told how he had qualified his donation card. It is a matter for debate whether we should reserve organs donated by British people for British people alone. This has a big effect in terms of the black and minority ethnic population, which Dr. Iddon mentioned. We need to be careful to disaggregate these issues so that we do not find ourselves proceeding in an emotive way but look at this in a purely pragmatic and "health opportunities" way.

I am keen to ensure that the Government have an opportunity to respond, so I do not intend to speak for more than another minute or so. However, I should like to refer to yesterday's news from America, where the new President has overturned the prevention of the use of embryonic stem cells. That will also have an effect in this country. The Minister will be aware of the operation reported last year to give Claudia Castillo a new trachea using a donated windpipe stripped and then covered with stem cells from her hip. Although the operation was undertaken in Barcelona, scientists at Bristol university transferred the windpipe. The particular advantage is that Miss Castillo does not need to use immuno-suppressant drugs because of the presence of her genetic material in the windpipe. I hope that the Under-Secretary can tell us what action will follow from that. We should note that the House's mature and measured approach to stem cell research has proved beneficial, and I am glad that US citizens can now participate in such research. There has been a marked difference between the scientific and research bases of the two countries.

It is clear from the Organ Donation Taskforce's autumn report that it does not believe at this stage that presumed consent is the best way to achieve the desired outcome of more successful transplants. It is also clear that there is much that the Government need to do, and that questions have been asked about their performance so far in increasing transplantation rates. The taskforce was saying that to us when we were in office, so we must push forward together on education and opportunity.

The report's outcome is slightly embarrassing for the Prime Minister because of his change of mind, but I do not blame him for changing his mind on a conscience issue.

Watch this

Photo of Jeremy Browne Jeremy Browne Shadow Minister (Treasury)

One could argue that the happiest state of affairs is one in which an opt-out system is not necessary because so many people opt in. I hope that the least that will happen as a result of our deliberations is that people watching the debate and the resultant media coverage are more inclined to become organ donors.

Watch this

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health)

I say, "Hear, hear" to that. We are all keen for the number of people who are prepared to give their organs to increase enormously.

I hope that the Under-Secretary has an opportunity to allay the concern that not enough action is being taken. On current evidence, it is impossible for me to support the Bill.

Watch this

Photo of Ann Keen Ann Keen Parliamentary Under-Secretary (Health Services), Department of Health 2:11 pm, 13th March 2009

I congratulate Mr. Browne on introducing the Bill. I commend him for his explanation, in relation to his constituent, Mr. O'Brien, of what gave rise to the measure, and I am pleased that Mr. O'Brien is able to be with us today. Of course, no one has more interest in the outcomes of such discussions and the decisions on such matters than people who are waiting for transplants and suffering, as so many people are.

Transplantation is one of medicine's great success stories and I know that the hon. Member for Taunton has always expressed a keen interest in it. I also associate myself with the remarks of Mr. O'Brien. I agree with him about the 1960s and the triumphs then. He made a thoughtful contribution about the way in which science and medicine have advanced our ability to care for patients and enabled us to look forward to a quality of life that was previously not thought possible.

As a nurse, I have been in situations, when nursing patients in intensive care or in accident and emergency, in which we have had to ask families to sit with us and make difficult and traumatic decisions. After such discussions, when a decision is made to donate, I have witnessed the relief of those families to know, even at their most difficult time of grief, that their loved one's life had a purpose.

As hon. Members know, the Government are absolutely committed to increasing the number of organs available for transplantation so that many more people can benefit from the life-saving procedure and have the quality of their and their families' lives transformed. In many ways, the success of transplantation surgery and advances in technology have led to the current challenges of unmet need.

Almost 8,000 individuals currently require a transplant, and the number is rising by approximately 8 per cent. each year. The figure does not reflect the true extent of need, as many clinicians are reluctant to list more patients than are realistically likely to receive organs. The true need is, at a minimum, 50 per cent. more than what is currently available and it is rising rapidly with demographic changes in the UK. Despite that, only around 3,000 operations a year are carried out, owing to a lack of available organs. Because of that, around three adults or children die every day waiting for a transplant or after being taken off the list because they had become too ill.

That is why we established the Organ Donation Taskforce—to consider options for increasing organ donation rates within existing legal frameworks. Hon. Members will know that the taskforce's recommendations, which were published in its first report, "Organs for transplants", in January last year, were broadly based on 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 taskforce made 14 recommendations, which are as follows. A UK-wide organ donation organisation should be established. The establishment of the organ donation organisation should be the responsibility of NHS Blood and Transplant. Urgent attention is required to resolve outstanding legal, ethical and professional issues, in order to ensure that all clinicians are supported and are able to work within a clear and unambiguous framework of good practice. In addition, an independent UK-wide donation ethics group should be established. All parts of the NHS must embrace organ donation as a usual event, not an unusual one. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of end-of-life care when appropriate. As hon. Members will be aware, our end-of-life strategy, which we launched last year, will also embrace that delicate and difficult issue and, with the appropriate training and facilities, that would be the right place for it. Discussions on that are ongoing.

Each trust should have an identified clinical donation champion and a trust donation committee to help to achieve that goal. Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis. Those criteria should be reviewed after 12 months in the light of evidence of their effect. The comparative impact of more detailed criteria should also be assessed. Donation activity in all trusts should be monitored. Rates of potential donor identification, referral, approaches to the family and consent to donation should be reported. The trust donation committee should report to the trust board through the clinical governance process and the medical director. The reports should be part of the assessment of trusts through the relevant health care regulator. Benchmark data from other trusts should be made available for comparison.

Brain stem death testing should be carried out in all patients where brain stem death is a likely diagnosis, even if organ donation is an unlikely outcome. Financial disincentives for trusts facilitating donation should be removed through the development and introduction of appropriate reimbursement. The current network of donor transplant co-ordinators should be expanded and strengthened through central employment by a UK-wide organ donation organisation. Additional co-ordinators, embedded within the critical care areas, should be employed to ensure a comprehensive, highly skilled, specialised and robust service.

Watch this

Photo of Stephen O'Brien Stephen O'Brien Shadow Minister (Health)

That is an important area and I am sure that what the Minister is saying is giving considerable reassurance to both Mr. Browne and his constituent, my namesake, whom I am pleased to acknowledge. The experience in Spain is important. Has the Minister asked people from Spain who have been through the process over a number of years to advise the Department on how this important initiative will be designed and implemented?

Watch this

Photo of Ann Keen Ann Keen Parliamentary Under-Secretary (Health Services), Department of Health

We are taking advice from all areas and I am confident that that would be guaranteed. That is always the right process where best practice is being delivered.

There should be close and defined collaboration between these teams, clinical staff and trust donation champions. Electronic online donor registration and organ offering systems should be developed. A UK-wide network of dedicated organ retrieval teams should be established to ensure timely, high-quality organ removal from all heart-beating and non-heart-beating donors.

The organ donation organisation should be responsible for commissioning the retrieval teams and for audit and performance management. All clinical staff likely to be involved in the treatment of potential organ donors should receive mandatory training in the principles of donation. There should also be regular update training.

Appropriate ways should be identified of personally and publicly recognising individual organ donors, where desired. These approaches may include national memorials, local initiatives and personal follow-up to donor families. I join the hon. Member for Taunton in paying tribute to all our citizens—and their families—who have so bravely given in order to give life, especially when one takes life for granted so many times in our daily lives. To be part of the giving age is very important. There is an urgent requirement to identify and implement the most effective methods through which organ donations and the "gift of life" can be promoted to the general public, and specifically to the black and minority ethnic population.

Watch this

Photo of Laura Moffatt Laura Moffatt Labour, Crawley

Does the Minister agree that an essential part of the negotiation as regards people from black and ethnic minority groups is to understand the faith issues that may or may not be involved? I congratulate those who are very keen to ensure that people understand that there are no objections to transplantation from either the Muslim or Hindu faiths.

Watch this

Photo of Ann Keen Ann Keen Parliamentary Under-Secretary (Health Services), Department of Health

I thank my hon. Friend for that intervention. Of course, the taskforce was able to gain much knowledge during the consultation period, although one cannot gain enough of it on such an important topic. It is about education and awareness and, most of all, about providing real reassurance about possible outcomes.

Research should be commissioned through Department of Health research and development funding. The Department of Health and the Ministry of Justice should develop formal guidelines for coroners concerning organ donation. The taskforce believes that its recommendations, if implemented, could increase organ donation rates by at least 50 per cent. by 2013. We have accepted all the taskforce's recommendations and made extra funding of £11 million available for implementation for 2008-09. Significantly more will follow in future years. An additional £4.5 million made available over the two years between 2008 and 2010 will fund a major publicity campaign to raise public awareness and help encourage people to register on the organ donation register.

We have also strengthened the leadership structures by appointing Chris Rudge as the first ever national clinical director for transplantation. Mr. Rudge has been tasked with driving forward the implementation of the taskforce recommendations and championing change and innovation. A programme delivery board has been established to ensure implementation work is co-ordinated and the board is overseen by the NHS medical director, Professor Sir Bruce Keogh. All the major stakeholders with a role in implementation, such as NHS Blood and Transplant and professional organisations, are represented.

I am pleased to report to the House that, one year on from the publication of the taskforce's recommendations, there are already good signs of progress. Donation and transplantation rates are up compared with the same time last year. In January this year, the number of people on the organ donation register reached 16 million people, representing 26 per cent. of the UK population.

Following two recruitment campaigns, 39 new donor transplant co-ordinators have been recruited, and a third campaign was launched in February with the aim of recruiting a further 20 new staff. We anticipate that a total of 265 staff, including donor transplant co-ordinators and office administrative support staff, will be in post by 2010-11. The national health service has a huge role to play, and is already taking action. At least 48 clinical donation champions are now in post, with more being appointed every week. It is anticipated that every acute trust will have a clinical donor champion in place by March next year. The champions will help to ensure that local policies supporting organ donation are developed and implemented. NHS Blood and Transplant has started reimbursing trusts for donation activity. That will remove some of the current financial disincentives within the NHS.

All Members will agree that it is vital that we fully optimise the opportunities for people to donate, that relatives and friends have confidence in our transplant services, and that more people agree to donation. Research shows that the majority of people in the UK support transplantation. Organ donation in this country operates on the basis of explicit consent. If, before they die, the deceased person consented to donation, their organs may lawfully be removed for transplantation. If there was no such indication, relatives are asked about the wishes of the deceased and whether they consent to donation. The Bill aims to change the basis of organ donation to a presumed consent or opt-out system, in the belief that that would lead to a significant increase in the number of organs available for transplantation.

The Government's view is that the arguments in favour of moving towards a system of presumed consent, as opposed to retaining current arrangements, are finely balanced. We therefore welcome this opportunity for all Members to debate fully the principle of presumed consent and the practicalities of introducing such a system in the United Kingdom. Members may recall that the other place considered the issue of presumed consent in its 2008 report on increasing the supply of donor organs within the European Union. The other place recommended that the Government's top priority in seeking to raise UK organ donation rates should be to implement the reorganisation of organ donation and transplant services. It also recommended that before a decision is taken about presumed consent, the Government should implement national and local education programmes to improve public understanding of the issue. If at a later stage a decision is taken to switch to presumed consent, the other place advised that that should not be implemented until considerable progress has been made in strengthening organ donation services.

Watch this

Photo of Christopher Chope Christopher Chope Conservative, Christchurch

Does the Minister accept that a lot of public concern is centred, for instance, around stories about the Falun Gong? There was an article in the Journal of the Royal Society of Medicine in March 2007 entitled, "The Falun Gong, organ transplantation, the holocaust and ourselves". The contents of such articles are enough to deter a lot of people from wanting to have their organs transplanted.

Watch this

Photo of Ann Keen Ann Keen Parliamentary Under-Secretary (Health Services), Department of Health

The hon. Gentleman raises the issue of misleading, disgraceful articles, and it would be a wonder that we made any progress if they were taken seriously. However, the British public have good common sense. With the right approach of taking the matter in stages, and the correct training and balance within our national health service and education service in general, the British people will treat such articles with the contempt that they deserve.

It would be helpful to the debate if I also reminded Members that the Organ Donation Taskforce has recently considered presumed consent in considerable detail. It carried out an in-depth analysis of the issues around an opt-out system, setting up six expert working groups to report on specific areas—clinical, communications, cultural, ethics, legal and practical. The taskforce commissioned an initial analysis of the cost of setting up a new consent system, a systematic review from the university of York of international literature on presumed consent systems across the world, a comprehensive series of deliberative events in seven regions across the UK, and one-to-one interviews with leaders of 17 different faith and belief groups. In addition, the taskforce—

The debate stood adjourned (Standing Order No. 11(2) ) .

Ordered, That the debate be resumed on Friday 19 June.

Watch this