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1.56 pm
Mr. Stephen O'Brien (Eddisbury) (Con): I start by congratulating the hon. Member for Taunton (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 the Member for North-West Hampshire (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 the hon. Member for Oxford, West and Abingdon (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.
Dr. Iddon: Does the hon. Gentleman find it surprising, as I do, that this Parliament, unlike many others, does not have a parliamentary bioethical Committee?
Mr. O'Brien: 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”—
“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 the hon. Member for Hendon (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 the hon. Member for Bolton, South-East (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.
Mr. Jeremy Browne: 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.
Mr. O'Brien: 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.
2.11 pm
The Parliamentary Under-Secretary of State for Health (Ann Keen): I congratulate the hon. Member for Taunton (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 the hon. Member for Eddisbury (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.
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