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20 Nov 2008 : Column 141WH—continued
“the strength of feeling among those who are opposed is considerable.”
That comment contrasts with the cry of doctors’ leaders, such as 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 front-line intensive care professionals regarding their patients’ protection and their work. A particular concern is the preservation of patient trust when there are fears about the temptation to harvest organs. I absolutely support the Minister’s comments about such suggestions being an affront to doctors. Looking at the issue from the other end of the telescope, we must deal with the fears of those whose ability to feel well-served by medical and health care professionals is based on that element of trust. That is why this issue is so important.
I think that we all want the amount of transplant surgery in the UK to rise to European levels, particularly those in Spain, or to those in America. What is needed is an expansion in the capacity of transplant surgery across the country, which means having trained surgeons and properly equipped support units, keeping organs from degenerating, and having universal coverage by donor transplant co-ordinators, or advocates—that word has been used. Where we do it, we do it well, but it is all too patchy in the UK. Although Spain is prayed in aid, transplant surgery is so widespread there, in so many categories, that the prior consent of the individual or next of kin is established without needing to rely on the presumption of consent. The question then 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. He has said:
“There is no country in the world where there has been sustained improvement after changing the law.”
To some degree, that supports the point that the hon. Member for Birmingham, Edgbaston (Ms Stuart) made in her intervention. He argues that it is the comprehensive transplant programme that accounts for Spain’s success. I find that argument very convincing.
Spain changed the law to introduce its opt-out scheme in 1979—so there has been plenty of time—but it had no impact until 1989, when the Spanish Government invested in specific training for health care professionals and appointed donor transplant co-ordinators in every intensive care unit. Another opt-out country, Sweden,
has fewer organs available for donation than we have in Britain. Equally, the USA has achieved an impressive increase in donor numbers while rejecting any legislative move towards presumed consent. If experts cannot produce evidence that a system of presumed consent would increase the number of transplants, there is no case for changing the law, and we should focus on increasing education and capacity. The report made it clear that a number of other avenues need to be pursued before a move to presumed consent can be entertained.
I hope that my next comments will be taken as being constructive. The Government have performed very poorly on organ donation. Answers to parliamentary questions have revealed that between April 2007 and March 2008, of the 444 hearts that were offered for transplantation, 317 were not accepted because they were damaged or had poor function, or for a reason unrelated to the condition of the heart. Of the 127 hearts retrieved, only three were found to be unsuitable on arrival at the transplant centre. That means that of 444 hearts—that is 444 donor patients, of course, and 444 often very difficult conversations with families in the first throes of grief—only 124 were made use of. That suggests that there is a prior question to consider in trying to increase the number available.
A parliamentary answer of 10 July stated that the Government have no idea how often
“a donor organ or donor tissue has been available but an intended transplant procedure has not taken place as a result of insufficient intensive care facilities in NHS hospitals in the last three years.”—[Official Report, 10 July 2008; Vol. 478, c. 1800W.]
Furthermore, the number of viable organs not used for transplant has risen significantly from two in 1997 to 16 last year. That information was in an answer in May. Will the Minister therefore tell the House what has become of the organ care system, which I understand has been piloted at Papworth? Instead of the organs being kept on ice, where they degenerate, they can be kept operating, oxygenated and enriched until they are needed. That has to be a better option, and we know that it works well elsewhere. Why do the Government appear to be dragging their feet on that issue?
More than ever, the January recommendations of the organ donation taskforce need to be progressed so that we can see whether the promised 50 per cent. increase in five years can be delivered. The Government accepted the recommendations in full, although at this stage they have funded only the first year. What commitment can the Minister make to the continued funding of the changes recommended in the first report?
“Only a UK-wide service can identify and allocate suitable organs to meet the needs of these patients.”
The creation of such a body was its first recommendation. Will the Minister tell the House what changes have been made to the organ donation and transplantation directorate of NHS Blood and Transplant to fulfil that recommendation? The report also advocated the following:
“Local policies, constructed around national guidelines”.
As the Minister well knows, I am loth to suggest any addition to the mass of paperwork foisted on to our NHS by this or any other Government. Has she taken forward the point about local policies constructed around national guidelines? The taskforce also recommended the following:
“Each Trust should have an identified clinical donation champion and a Trust donation committee”.
How many trusts now have that?
The taskforce’s recommendation 6 was that donation activity should be reported to the trust board, be part of the regulator’s assessment and be available to other trusts as benchmark data. Those data are currently collected through UK Transplant’s potential donor audit, although it should focus on conversion rates—getting a new organ in a person—rather than donation rates. I hope that the Minister will take the opportunity to tell us what progress has been made on that.
I turn to costs. Recommendation 8 was about the costs of donation, which are currently borne by the donating hospital and therefore provide a financial disincentive to donation. The taskforce recommended the following:
“Measures for realistic reimbursement for the costs of donation should be developed”.
Again, does the Minister have an answer about whether that has been done? One of the most effective changes that could be made is round-the-clock cover by donor transplant co-ordinators. Recommendation 9 was as follows:
“Additional co-ordinators, embedded within critical care areas, should be employed to ensure a comprehensive, highly skilled, specialised and robust service.”
What progress has been made on that?
There were two recommendations on education. The first was education aimed at clinicians and teams involved in donation, and the second was education for the general public, and specifically the black and minority ethnic population, to raise awareness of donation. Has the Department commissioned research on how best to do that, and when will it report? As with so many areas of health, the need for donor organs is three to four times higher among black and minority ethnic citizens than among the white population, due to higher rates of diabetes and kidney problems. What measure do the Government propose to encourage higher rates of organ donation among those racial groups?
Having looked at the full cycle of organ donation and transplantation, is the Minister aware of a series of errors in the prescribing and dispensing of immunosuppressants used to prevent organ rejection? Those errors have resulted in serious long-term medical consequences for patients. There are currently two immunosuppressant products used post-transplant that have the same active ingredient, but due to their narrow therapeutic indices, they are not freely interchangeable. As with many drugs, they are often prescribed on the basis of the active ingredient. That can lead to inadvertent switching between the two products, which could lead to organ rejection. There are two known cases of that, and a further 36 reports of such inadvertent prescribing or dispensing errors that have, thankfully, had less serious consequences.
The cost of such errors to patients’ quality of life is significant, as are the financial costs to the NHS if the immunosuppressant regime is not accurate. A successful kidney transplant allows for a near-normal quality of life, with the cost of immunosuppressant therapy being approximately £5,000 a year. A rejected kidney has a severe impact on the quality of a patient’s life, requiring hospitalisation, the loss of an organ and a return to dialysis, at a cost of about £30,000 per annum and the
need for retransplantation. Does the Minister agree that urgent attention and guidance is required to ensure that all prescribing and dispensing health care professionals are made clearly aware of the difference between the two products and the need to clarify which they intend a patient to receive, so that those errors are prevented and successful organ transplantations are not put at risk?
The Minister will be aware of the operation reported yesterday 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, it was scientists at Bristol university who transformed the windpipe, so I am sure that the Minister will be more than familiar with the case. The advantage is that Miss Castillo does not need to use immunosuppressant drugs, because of the presence of her own genetic material in the windpipe. What action can the Government take to progress that technology? Will the Minister continue to urge the research councils and others to maintain and expand their support for it?
It is clear from the taskforce’s report that it does not believe at this stage that presumed consent is the best way of achieving the desired outcome—more successful transplants. It is clear also that there is much for the Government to do to raise transplantation rates, and there are questions about their performance to date. The outcome of the report is possibly a touch embarrassing for the Prime Minister, and it is disappointing that he has not seen fit to acknowledge it as the taskforce’s evidence-based conclusion. The Guardian quotes him as being “dismayed and frustrated”. Given that this is a free-vote issue, like every other Member he is of course entitled to his view. But as the expert taskforce that he himself set up has raised serious concerns about adopting a presumed consent regime at this stage, and ahead of trying other avenues, it must be hoped that he will not use his position or the machinery of government to promote his view, and certainly not to save face.
I am a little confused by the disjunction between the Prime Minister’s position, which seems to be that he is keen on pushing ahead with presumed consent, and that of the Minister’s immediate boss, the Secretary of State for Health. He said the other day that he accepted the taskforce’s recommendation
“that we should aim to raise donation rates without the added complications associated with a change in legislation”.—[Official Report, 17 November 2008; Vol. 483, c. 6WS.]
Finally, our bodies are our own. They do not belong to the state. The then Health Secretary, the right hon. Member for Airdrie and Shotts (John Reid) said during the 2004 debate that
“the decision about one’s own body should be for the conscience of individual citizens. It is not for this Parliament...to impose on individuals a requisition of their bodies after death for the use of the state.”—[Official Report, 28 June 2004; Vol. 423, c. 76.]
Donation is and should remain a philanthropic act. It is in that act of shared responsibility that our co-existence as humans is confirmed and our society strengthened. That is not something that should or can be imposed by the state.
3.10 pm
Ms Gisela Stuart (Birmingham, Edgbaston) (Lab): I declare an interest, as one of the largest transplant centres is part of the University Hospitals Birmingham NHS foundation trust.
The very first question I ever had to answer as a Health Minister in the House of Commons was from Tam Dalyell, who was a great supporter of presumed consent. I remember the Department of Health briefing on why we were not in favour of presumed consent, and the Department has probably remained quite consistent in its approach. One reason I wanted to speak in the debate was that I was slightly worried that we were being too rational. The problem with the debate is not the rational arguments, but the irrational side of the debate. In a sense, we ask about consent at a time when the people concerned are probably past caring, because, with the exception of live kidney donation, whoever gave the consent is dead at that point. The key thing is how we look after the bereaved and the families. The conversation needs to be much wider, by its very nature. We should look at those aspects of the issue more clearly.
The second troubling aspect, which has been touched on, is whether we are focusing on the right thing; I am not sure we are. If I remember my 1999 briefing correctly, when I asked why donations in this country had dropped so much, I was told, “To put it frankly, it is not least because road safety here has improved so much that we do not have sufficient numbers of accidents involving young people arriving in hospital, which means perfect bodies for donation are arriving in the right place.” Now those young people survive, which is a very good thing. Someone asked me at that time why the UK was so far ahead of the rest of Europe in kidney transplants. The answer was that those countries had the money to finance dialysis, so they never invested in transplant techniques. I am slightly worried that we will get hooked on the idea that all that matters is increasing the number of live transplants, and we will not pay attention to artificial devices that might bring us to the point of not needing those transplants. They are not the be all and end all; perhaps we are having the wrong debate.
The debate has been going on for decades. To go back to the introduction of the donor register, anyone who wants to have a good look at the subject should consult the record of Friday’s debate in the House of Lords on the European Union report on increasing the supply of donor organs. It was a very thoughtful debate and brought out the facts. One thing on which we should do a bit more work is donor matching across Europe. Every time I see a certain constituent of mine on Harborne high street he comes up to me and says, “I owe you my life,” because we arranged to go to the Brussels register for him, and a liver, I think, was found for him in a fellow EU country.
There is a rational debate to be had, but I want to focus on the irrational debate. Hon. Members are right; it is a question of whose body it is, anyway. It is not an artificial argument. In The Daily Telegraph this week, a piece by Irwin Stelzer was headlined, “Gordon Brown demands money—and organs”. Such ideas—the Prime Minister demands your organs—get into political debate. We know that it is nonsense, and the debate should not be in that area, but it is taken there. We have a problem with language. I really think that we should stop talking
about organ harvesting, as that gives me the creeps. It becomes difficult when we use language of that kind to engage in debates such as I had last year when the Select Committee on Foreign Affairs went to China and we talked about the human rights record. One of our biggest arguments against the Chinese human rights record is the way in which they clearly streamline executions to happen so that they can harvest organs. They said, “What is your problem? Those people are going to be put to death anyway, so what is the problem with co-ordinating the timing?” We said, “Can’t you see it?” and they said, “No, we can’t.” It is an incredibly emotive debate, not a rational one.
It is right to say that on one level it is an insult to clinicians to assume that they would ever make a clinical decision based on the need for the organ, but the fears, nevertheless, are out there. We need to deal with that. Presumed consent goes to the heart of the relationship between the individual and the state, but also the relationship between the individual and the national health service. That institution has the most enormous good will; and there are other ways around the problem. To draw again on the expertise of the House of Lords, Baroness Finlay talked in her speech about using brain stem death testing as a standard practice that would increase the availability of organs at a time when they could be used properly. She cited the example of practice at Charing Cross hospital, and explained that
“when the family of the patient are present and they witness the testing, it can help them come to terms with the loss of a loved one and help them understand the process prior to donation.”—[Official Report, House of Lords, 14 November 2008; Vol. 705, c. 845.]
I know that there is a clinical debate, because I seem to recall that an attempt was made to introduce such practice in a private Member’s Bill five or six years ago, and clinical arguments were made both ways. I do not for a moment pretend to understand it, but the core of the matter must be a wider debate. The more publicity we can get—even through today’s debate—and the more we bring the issue into the open, the better. There is clearly a quite irrational element to the issue, because whenever the population at large is asked about it, the result is something like 90 per cent. saying they are in favour. However, I think people would like to be asked. The way to overcome the difficulty is by having the necessary conversations earlier on, and as much in the open as possible. Even in Spain, people are asked, by the way; there is no evidence that, even though there is presumed consent there, transplants are ever done without obtaining consent.
We are living in a climate in which few people have faith in large databases, and to know that one’s opt-out will be registered somewhere in a large database will not, I think, create confidence. I urge the Minister if possible to take note of the report, which was extremely thoughtful. I pay tribute to Elisabeth Buggins, who is the chair of the strategic health authority in my area. That is another west midlands interest to be declared.
My final thought is that when, many years ago, Bruce Keogh—who is now Sir Bruce Keogh, and is at the Department of Health—was a surgeon in Birmingham, a debate was going on about which transplant centre should be closed, for clinical excellence reasons. I asked him if I could spend a day with him to see a patient through the process, and see what happened. It was an
eye-opening experience. I asked him at the end of the day what makes a really good surgeon, and he said it was knowing when not to do something. On this occasion the Government could legislate for presumed consent, but there are many other things we could do that would not break people’s trust or break faith, and would give us the desired result. This may be one of those occasions when the wisest thing is not to do it.
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