Westminster Hall
Thursday 20 November 2008
[Miss Anne Begg in the Chair]
Organ Donation
Motion made, and Question proposed, That the sitting be now adjourned.—[Mrs. Hodgson.]
2.30 pm
The Minister of State, Department of Health (Dawn Primarolo): Welcome to the Chair, Miss Begg. Just over 40 years ago, the surgeon Christiaan Barnard performed the first heart transplant on a human. The 55-year-old recipient survived for only 18 days, but the operation was an important medical milestone, showing that transplant surgery was a viable procedure for patients with organ failure. Since then, surgical techniques have moved on enormously in terms of both the range of transplants performed and their success rate. Today, transplant surgery helps thousands of desperately ill patients every year, giving them a new lease of life and new hope for the future against all odds. However, the impact that this miracle of medical science can bring to patients’ lives is limited by the fact that the demand for organs far exceeds the supply. Currently, 8,000 patients are on the waiting list for transplants. Of those, 3,000 will eventually receive surgery, but 1,000 will die while waiting for organs to become available and thousands face a long and uncertain future.
That is why my right hon. Friend the Member for Doncaster, Central (Ms Winterton), when she was a Health Minister, set up the organ donation taskforce in 2006 to consider the barriers to organ donation and make recommendations on how they could be overcome. In its first report, published in January, the taskforce made 14 recommendations, all of which were accepted by the Department of Health and its counterparts in Scotland, Wales and Northern Ireland.
One of the key issues to which the taskforce pointed was the need for better donor identification and referral. None of us underestimates what an incredible gift it is to donate one’s organs, handing life to a patient on the brink of death. The amazing stories of children, parents and grandparents given new hope and more time with their families and friends are eloquent testimony. Indeed, families of deceased donors frequently say that they have drawn great consolation from the fact that their tragedy led to a happier outcome for someone else.
The problem is that at present, only one in four people are on the donor register. Numbers have trebled since 1997, which shows that we are heading in the right direction, but even so, the gap between those registering for organ donation and the number waiting for a transplant is growing. Why is that happening? We know that there are many misconceptions that discourage people from joining the donor list. For instance, there is a myth that one must be a certain age to become a donor, which is not true. It is also suggested that donors will not receive the same quality of care in hospital, which is frankly an affront to clinicians’ ethical conscience. There is also a
squeamish belief that organs are removed from dying people while they are still alive. That is not true; it is a myth that stems from the fact that some organs are retrieved, but from people who are dead. A considerable proportion of people, estimated at 90 per cent. of the UK population, say that they support organ donation, yet only 26 per cent. have signed the organ donor register.
Our first priority must be to increase the number of people putting themselves forward as donors. That means exploding some of the myths, making a positive case for organ donation and translating people’s good intentions into hard action. Starting a public debate about organ donation is an important end in itself. Since the taskforce reported in January, a further 1 million people have signed up to the register, and the Department is now embarking on a £4.5 million publicity drive with the ambitious aim of getting 20 million people on the register by 2010, working towards 25 million by 2013.
Dr. Evan Harris (Oxford, West and Abingdon) (LD): I certainly support what the Minister is saying and what the Government are doing on the matter, but there is one thing that I find curious, and I would be grateful for her reflections. Although more and more people have signed up to the organ donor register—not as many as we would like, but many more—and that graph is going upwards, the number of cadaveric transplants, which is the desired end result, has gone flat. That suggests, curiously, that there is no link between the number of people signing the register and the number of transplants. We need people to sign to prevent the number from falling, but it does not appear to be the solution, for some reason, to the lack of a rise in the number of transplants.
Dawn Primarolo: The hon. Gentleman touches on a number of points addressed by the taskforce in both its reports—I shall return to them briefly in my comments—about arrangements in the health service to ensure that even where the health service is aware that somebody is on the donor register, or where donation has been indicated in discussions with the family and the individual, the system works to its optimum potential. If he will bear with me, I will go on to discuss ways of ensuring that we close the gap that he identified, as well as our response to the taskforce’s report on presumed consent.
I know that the hon. Gentleman is knowledgeable, and takes a great deal of interest in the subject. He will be aware that only a tiny proportion of people die in circumstances that could be described, if he will forgive me, as conducive to organ donation. The window of opportunity between a patient’s death and the removal of the organ from their body is narrow indeed, and only a tiny proportion of deaths fit the bill every year. That means that we must maximise the chances that the few people who die in the right circumstances, if I can call them that, are willing to donate their organs. That is why the chief medical officer made the case for changing the law to presumed consent, so that clinicians could presume that every patient is happy for their organs to be removed unless they specifically opt out.
Given the seriousness of the organ shortage and the sensitivities and complications surrounding the proposal, the Secretary of State asked the taskforce to consider that question separately as a matter of urgency. I am
grateful for the thoroughness with which the taskforce has responded. Its second report, published this week, emphasised how finely balanced the arguments are, but it argued in the end that donation rates could be optimised without presumed consent: that is, within the current legislation and without the requirement for further legislation.
As part of a large body of evidence, the taskforce carefully examined the situation in Spain, which has the highest donor rate in the world and is frequently cited as proof that presumed consent works. It concluded that Spain’s success was due not to presumed consent but to how its medical systems are organised and the unenviable fact that Spain has a high rate of road traffic deaths, which often give rise to circumstances suitable for organ donation. On the back of those findings, the Secretary of State decided that our immediate priorities should be in line with the taskforce’s initial recommendations; increasing the number of people on the organ donor register, as I have already mentioned, but also reforming local and national systems so that we can optimise the potential for donation and help as many transplant patients as possible. We have already taken some key steps since the taskforce published its report in January, and I would like to provide a brief progress update on those steps.
First, at a national level, we have a new national clinical director for transplantation and a programme delivery board, which will provide strong leadership and oversee the implementation of the taskforce’s recommendations. Secondly, we are strengthening the local work force to help the NHS to increase the number of donors. The NHS blood and transplant service is in the process of increasing the number of national donor transplant co-ordinators by 146 per cent., with 29 new appointments already made. In addition, all trusts have been asked to appoint clinical donation champions and to establish donation committees, to drive through local changes.
Thirdly and finally, we are putting in place local systems and infrastructure to maximise the opportunities for organ donation. That includes online systems to speed up the allocation of donated organs and reimbursing hospitals for the costs associated with organ donations, thereby removing any financial disincentives to transplantation. We must also ensure that the NHS is in a position to cope with the additional organs that will become available for transplant, which is why we are working with the national commissioning group to build a stronger network of organ retrieval teams across the UK. The hon. Member for Oxford, West and Abingdon (Dr. Harris) took part in a programme on this subject on Channel 4, so he will recall that the surgeons from Spain who featured in that programme made particular reference to the fact that the real benefits, and therefore increased donations, came from having those advocates and that system in each hospital.
Ms Gisela Stuart (Birmingham, Edgbaston) (Lab): Last Friday, there was a debate in the House of Lords, in which Lord Crisp, who is a former chief executive of the NHS and a former permanent secretary in the Department of Health, said:
“To implement the reorganisation of organ donations and transplantation services must be the Department of Health’s priority now.”—[Official Report, House of Lords, 14 November 2008; Vol. 705, c. 846.]
He very much hoped that Ministers in the Department would reaffirm that that reorganisation is their top priority at this stage. Will the Minister comment on that?
Dawn Primarolo: I can certainly confirm for my hon. Friend that it is a top priority. I can also confirm that resources have been made available to ensure that those services are developed, so the Department is moving forward on that issue. Part of that process is about increasing the number of people on the organ donor register, to ensure that access to organs is possible. However, as I have already mentioned, the process is also about investment in the relevant services and about the discussions with the families and patients, regardless of whether or not they are prepared to be a donor, to ensure that that work is done. As I have said, the systems to ensure that referrals work quickly and accurately are also important.
The taskforce predicts that, if we implemented all 14 recommendations from its first report, that could lead to a 50 per cent. increase in organ donation rates within five years. In response to the point made by my hon. Friend, may I say that we intend to implement those recommendations? However, the Department is of the view that, because of our commitments in this priority area, we can do better than that. We would like to see organ donation rates rise from about 800 a year to 1,400 a year by 2013, which would put the UK alongside the countries with the best rates in Europe. Of course, hon. Members should bear in mind the fact that, on average, each donor can help three patients, so such an increase would help an extra 1,800 people a year to receive the transplant that they so desperately need, which would be a considerable achievement.
I do not underestimate, however, the urgency of the situation or the desperate consequences for the thousands of people awaiting transplant surgery if that approach does not yield the improvement that the taskforce expects. It is for that reason that the Secretary of State has made it clear that we intend to keep a very close eye on progress and, if necessary, we will bring more radical solutions to the House, including the prospect of introducing some form of presumed consent. Closing the door on any option means closing the door on patients who are on the very edge of life—patients for whom a transplant represents their last hope—which is why we need to keep an open mind while continuing to make the important reforms that the taskforce has recommended. The lessons for us are quite clear, given the progress that Spain has been able to make. We are determined to turn the situation in the UK around, and I believe that in the years ahead we can achieve a substantial increase both in the number of organs that are made available and, more importantly, in the number of patients whose lives are transformed by transplant surgery.
2.47 pm
Mr. Stephen O'Brien (Eddisbury) (Con):
I declare, hopefully alongside all my hon. Friends and other colleagues in the House, that I am on the organ donation
register and I have held my organ donor card since 1986. For 10 years before that, I think that it was known as the kidney donor card, before it was expanded to become the broader organ donor card. Interestingly, I was comparing donor cards with my right hon. Friend the Member for North-West Hampshire (Sir George Young) in the Members Tea Room earlier this week, and he informed me that, when he was first elected to the House in 1979, his very first debate was about taking forward the whole donor campaign. He had had his card since 1979 and it still had that date on it, which was pretty impressive.
To discuss organ donation is literally to discuss the question of life and death. The House must recognise that, and I am sure that the whole House will join me in paying tribute to all those people who are donors, whether of blood, plasma or bone marrow, and all those people who are on the organ donation register. The number of people on that register is increasing; 15.8 million people was the last publicly recorded figure, according to NHS transplant data. In particular, we must pay tribute not only to all those people 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 support organ donation. Although all hon. Members will doubtless hold strong opinions on this issue and will seek, quite rightly, to call the Government to account, I have no doubt that this debate will be underpinned in all our minds by the awareness of these selfless acts by hundreds of people across the country.
Many of us will remember the first transplant; indeed, the Minister herself referred to it earlier. It was performed by Dr. Christiaan Barnard in South Africa in 1967. It is one of the very first memories that I have of news on television, along with Churchill’s funeral and the first man to step on the moon, events that all took place during those pioneering days of the 1960s. As of today, 7,981 people in Britain are waiting for transplants, but only about 3,000 transplants are carried out each year, tragically leading to the situation in which more than 1,000 people die each year for want of a transplant. The chief medical officer has stated that other people are “dying silently”, because doctors know that there is no hope of them receiving treatment, so they are not putting them on the transplant waiting lists. In Britain, we have about 13 donors per million in our population, whereas Spain—the best in the world—has 35 per million.
This issue was last raised in legislative terms during the passage of the Human Tissue Bill in 2004, when the hon. Member for Oxford, West and Abingdon (Dr. Harris) pushed for a system of presumed consent. I dare say that we will hear more from him in a moment. This is an issue of conscience and is therefore free vote territory, certainly for the Opposition. Although I am the Conservative spokesman on health, on this issue, my words today do not constitute a party line on presumed consent. When we voted on introducing presumed consent in 2004, I voted against it, as did the current Prime Minister.
I welcome the debate, which comes after Monday’s publication of the expert taskforce’s report on presumed consent. The taskforce was commissioned to look into the issue by the Prime Minister in January, following his apparent conversion. In his homiletic article for The Sunday Telegraph of 13 January, he said:
“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 to refer the matter to an expert panel, which was the better for focusing on evidence rather than other judgments—moral or otherwise. I pay tribute to Elisabeth Buggins and her team for the thorough and thoughtful process that they have undertaken. It is refreshing to see a progression of thinking in the report, from the group having disparate views on the matter to its members reaching broad consensus. Not only were the group’s views disparate, but, according to the journalist Michael White’s article in The Guardian this week:
“Ministers had been assured that a majority of its members favoured ‘presumed consent’”.
In paragraph 2.7 of the 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. It also touches on the sanctity and ownership of our bodies, in terms of any form of living will before death, and on the wishes and interests of the next of kin after death. However, the primary hurdle is the evidence as to whether a change in the law would lead to an increase in organ transplants and to universal access to them across the country. The Minister has sought to address that issue. There seems to be no evidence to suggest that that hurdle can be cleared, but the taskforce did not completely write off presumed consent. It noted that it “may deliver real benefits”, but the stronger concern, which outweighed that possibility, was that it
“carries a significant risk of making the current situation worse.”
The taskforce ultimately opposed a move to presumed consent at this stage. Its important, objective report is a good basis on which to build policies and decide our direction for the future. It will be interesting to note whether those who do not agree with the report’s outcome go to the usual refuge of those who do not like a report—disputing it and asking whether its process was flawed. I shall look forward to that debate.
Ms Gisela Stuart: Will the hon. Gentleman comment on the French experience? They briefly introduced presumed consent, but at that point the numbers dropped dramatically and they had to reverse the legislation.
Mr. O'Brien: I confess that I have not studied that case in detail, so I am not sure whether I could draw any conclusions from that evidence, or whether it is disputed. [Interruption.] I have just heard a grumbling from a Member in a sedentary position who might be regarded, in this respect, as the usual suspect. As I hope to show in a moment, we have to be careful not to equate presumed consent with the question of whether access and availability will be improved.
Dr. Evan Harris: I should like to put my grumblings on the record. I questioned whether the point, as it was made by the hon. Member for Birmingham, Edgbaston (Ms Stuart), is correct. In order to assert that it is, one has to look at the figures in the years before and after the change in the law to see whether any other factors were relevant. There was an issue in France, but I believe that it was some years later and was not related to a misapplication of the law. Therefore, I do not think that the case was exactly as she put it.
Mr. O'Brien: I do not for one second suggest that I have knowledge at the same level as the hon. Gentleman, who I know has studied this matter in great detail. That said, where we can get evidence, we must try hard to base many of our judgments on the evidence that can be relied on. Different countries will be configured differently and will have different practices and cultural contexts, but we must try to root ourselves in the available evidence.
It is worth noting from the report that clinicians from intensive care, where the majority of deaths leading to donation occur, were at the forefront of opposing presumed consent. According to the Intensive Care Society, they are pretty evenly split on the question, but those who oppose it do so vehemently. In the words of the report,
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