Organ Donation
The final item of business is a members' business debate on motion S3M-483, in the name of George Foulkes, on time for a fresh debate on organ donation. The debate will be concluded without any question being put.
Motion debated,
That the Parliament commends the ongoing work that British Medical Association Scotland is doing to raise awareness of organ donation; recognises that the number of people on the active and temporarily suspended transplant waiting list in Scotland rose by almost 20% from 695 in September 2005 to its highest level of 818 in July 2007 and yet only 50 organs were donated in Scotland last year and that at 10 June 2007 there were 135 people in the NHS Lothian area registered with UK Transplant as waiting for an organ; recognises that the current opt-in system of organ donation is unable to meet the increasing demands placed upon it; acknowledges the need for a full and proper public debate to establish the level of support that exists for a move to a system of presumed consent that will both inform future proposals in this area and raise awareness of the desperate need for organ donors, and considers that moves to turn the tremendous level of public and, increasingly, professional support that exists for organ donation into something meaningful should be supported by implementing a system of presumed consent.
I hope that the spirit of consensus that we saw at decision time will continue in this members' debate. I genuinely thank all the members who have chosen to stay and participate in this evening's debate, many of whom have a long and distinguished record of participation—much longer than mine. I am also grateful to the British Medical Association and, if I may say so—I do not know why I say that, but I do—to Scotland on Sunday for its on-going support and efforts in championing the cause of presumed consent.
It is a sobering thought that today, one person in Britain will die waiting for an organ transplant. Another 9,000 people are still waiting for transplants. The issue is not party political. The debate is not about winning an argument and it is certainly not about taking a populist line: it is about saving lives. The intention is to make nearly every person in Britain realise that they and we can make a difference. Each person can provide hope and give something back after they have gone. The introduction of an opt-out system in Britain would mean that we could all give life to someone without lifting a finger or signing a consent form.
I have seen at first hand what the gift of life does for people who have battled with waiting and hoping for a new heart or a new lung. It is moving and inspiring. I confess that I am a convert to the cause, because I was sceptical after the Alder Hey scandal. When I attended the launch of the British transplant games in Edinburgh last summer, I came to comprehend fully that an organ transplant not only saves someone from death, but gives them a new lease of life. The recipients who participated in the games used their second chance at life to push themselves further and harder than they might have done before the transplant.
Transplants and the gift of life do not benefit just recipients. In some cases, the families of donors have been comforted to see how a relative's decision to give their organs after their death has given life back to someone who is now living life to the full.
The common theme of the transplant games was achievement and success, but the participants held the common belief that there is still an awful lot to do on organ donation so, after the games, I joined the BMA in an effort to urge the Scottish and UK Governments to act and to convince the Scottish and UK people of what I believe has become a compelling case for a system of presumed consent. I acknowledge the contribution over the years of other members, such as John Farquhar Munro, who have argued the case for a long time.
As we all do, John Farquhar Munro recognises that we need public support for change. Survey results have shown that most of the public support organ donation. In a YouGov poll in October 2007, 74 per cent of people in Scotland and 64 per cent of people around the UK were in favour of an opt-out system. Ninety per cent of people support organ donation but, unfortunately, although the rate of support is high, only 24 per cent of people put their name on the organ donor register.
People's graphic and moving accounts of the experience of organ donation often counter the common view that the deceased's family want to decide about donation at the time of loss. That is a misconception. Some people feel that one advantage of an opt-out system is that it takes a difficult and traumatic decision away from relatives at a time when they might not feel emotionally able to make a rational decision. There are families who regret the decision to refuse donation and wish that they had not been asked to deal with it at such a difficult time. Some feel in retrospect that to achieve something good in a tragic situation would have helped them come to terms with their loss.
At the BMA briefing yesterday, we heard that the organs of a person who died in a car accident had saved five other lives. That gave that person's family some comfort in a tragic situation. That does not mean that we propose to remove the need to consult the family; rather, we want to make a cultural change, so that donation is perceived as the default position, which would make the decision easier. The question would be, "Do you object?" rather than, "Do you agree?" That would make donation less of an extraordinary and altruistic choice.
The gap between the number of organs that are available and the number of people who need a transplant grows by an average of 8 per cent a year and shows no sign of narrowing. The waiting list for organs stands at an all-time high. We need to act now if we are to reverse the position.
I hope that the debate will not only raise awareness of the issue but start to convert the sympathetic response from Scottish Government ministers—I say that to Shona Robison with absolute sincerity—into their making a contribution to the consultation that will push the nation forward so that we stop discussing making a difference and do something about it.
However, we must recognise that there are understandable concerns about the introduction of an opt-out system. Those will form part of the debate, but I am convinced that an open and informed debate will ensure that concerns can be voiced and fears allayed. Neither the Governments of Scotland and Britain nor the BMA want to implement an opt-out system without the right safeguards in place to ensure that property is protected, the rights of children and parents are upheld, concerns about which organs can be donated are addressed and the wishes of those who have opted out are documented securely and upheld at all times.
We are proposing a soft system of presumed consent, with safeguards in place. That is why an informed debate is needed. We are lagging behind other European countries. Spain already has five times the donation level that we have, and the Spanish model has been adopted in other parts of Europe. That is what we are proposing.
Last week the organ donation task force, under Mrs Elisabeth Buggins, published its first report. If we adopt all its recommendations, as the Scottish and UK Governments are inclined to do, we may anticipate a 50 per cent increase in donations. However, we need to go much further. That is why Mrs Buggins and her team are now considering presumed consent. Alan Johnson, the United Kingdom Secretary of State for Health, has asked them to do that. I hope that we will give the process an extra push and move towards presumed consent, so that people will not continue to die unnecessarily day after day for the foreseeable future. I hope that Parliament will support the motion.
In this debate, it is assumed that the arguments in favour of change are so self-evident that any reasonable person would agree with them, so there is a danger that this important issue will not be debated properly. For that reason, I congratulate George Foulkes on bringing the matter to Parliament, at a more civilised time of the day and in a more civilised forum than those to which he may have been accustomed in the place where both of us formerly served.
I have made the opposite journey from George Foulkes. For most of my adult life, I supported a switch to presumed consent. Like many people, I believe, I did so on an easy and superficial level. However, my support for presumed consent did not survive a full debate on the subject that I attended about 10 years ago. I went into the debate a supporter of presumed consent and came out an opponent.
I concede that the proposal is superficially attractive and I understand why people are drawn to it: it is a big hit, it costs but little and it looks like we can argue that there are winners all round. My response to that suggestion is, "Maybe—up to a point, m'lud.' It is interesting that on the two occasions when health committees of Parliament have considered the issue, they have not agreed to the introduction of presumed consent. I was involved in the second set of deliberations, in the context of consideration of the Human Tissue (Scotland) Bill in 2005 and 2006.
Why did the Health Committee not agree to the introduction of presumed consent, and why am I opposed to it? The principal reason is that it turns consent on its head. Consent should be a positive decision. We expect that to be the case in all our human endeavours, from criminal law right down to the tiny print that requires us to opt out of junk mail if we do not want to receive it. We are always annoyed when, because of a requirement to opt out, we end up with stuff cascading through our letterboxes. A gift is not a gift if we attach the word "presumed" to it. The proposal turns on its head the notion of organ donation as a gift.
Presumed consent has a chequered history. That is one of the reasons why the Health Committee took the view that it did when it considered the issue. The Human Tissue (Scotland) Bill arose in part out of the Alder Hey disaster. We need to remember the distress that people felt at that time, which arose directly from presumed consent. On those occasions, doctors presumed without bothering to ask. A presumption was made. The end is laudable, but ends do not justify the use of just any means. Huge issues of trust are involved, and the proposal does not address the issue of hard versus soft presumed consent or the enormous differences between the two.
I do not have a problem with organ donation. I have signed the organ donor register many times. Whenever the card wore out, I got a new card, and it is great that the register is now online. However, I will be dead at the point when the decision has to be made, so I am concerned more about the grieving families that are left behind. At that point, it ceases to be about me. It is about the people I leave behind. What would I do? I would have to think hard about it. I am happy to have my organs donated, but I am not happy for my family to be put under pressure at that point. The matter needs to be considered extremely carefully.
There is also a big practical issue. What incentive will there ever be to publicise an opt-out register? We can barely spend money to publicise the opt-in register that we have at present. There would be no incentive to bring an opt-out register to people's attention. I suspect that the first many people would hear about it would be in hospital at a time when they were least able to handle it.
Organ donation is a hugely sensitive subject, as the two speeches that we have heard so far have clearly illustrated. I am therefore grateful to George Foulkes for all the work that he has done on the matter since he came to Parliament. I also acknowledge the work of other members in previous sessions. A public debate on an opt-out register and organ donation more generally is overdue, so I am delighted that George Foulkes has secured this members' business debate.
I am confident that other members will cover the general issues of organ donation, so I will focus on a particular aspect—baby and child organ donation. I appreciate that the issue is highly sensitive, but it is crucial that it is not overlooked in the wider debate.
Early in my time as an MSP, I was approached by Anne Fotheringham, who is a constituent of mine from Methil. Anne's daughter, Angel, was born in 2006 with multiple difficulties. Within months, she required a new liver and bowel, for which she was placed on the transplant list. At that time, she was so small that she needed the organs of a newborn baby. Anne set up a campaign for a double transplant. Through sheer perseverance and determination, her campaign for Angel received support from a number of well-known celebrities and widespread coverage in the written and broadcast media. However, after 16 months on the transplant list, Angel died in June last year at the Royal hospital for sick children in Edinburgh. I am concerned that the system is not working for children as effectively as it could if parents have to resort to media campaigning at what is clearly a stressful time.
Thankfully, the number of children who are waiting for transplants is not large, but it is significant. At present, nine children are waiting for a transplant in Scotland. Last year, 12 recipients of transplants in Scotland were aged under 17. We must do all that we can to help children in Scotland who need organs to get the chance of a transplant.
To be clear, I am not suggesting that we extend an opt-out system to include young children. The BMA, which has long advocated an opt-out system in general, would not apply it to under 16s. The Human Tissue (Scotland) Act 2006 makes a distinction at 12 rather than 16. If we are to have an opt-out donation system, careful consideration should be given to the age at which we deem people are competent to make the decision for themselves.
However, the adoption of a soft system of presumed consent for adults could improve the system for children in a number of ways. I cannot imagine having to make a decision about organ donation for a child and—like other parents, I imagine—it is not something that I even want to think about. However, an opt-out system and the debate that would accompany its introduction could make organ donation a subject that parents had discussed before they were approached about consent. A public debate might give parents an opportunity to reflect on the issue so that they are more secure in any decision that they are asked to make.
It is not just legislation that will increase organ donation. An education and awareness campaign, a public debate on organ donation, and the implementation of the recommendations of the organ donation task force could also boost awareness of child organ donation. What matters most is that we minimise the tragic waste of young lives waiting in vain on the transplant list and that we do so while fully adhering to the needs and wishes of parents.
I am happy to speak in this evening's debate and, at least in a small way, to pay respect to all the hard work that Anne Fotheringham has done to raise awareness of organ donation in Fife and throughout Scotland. I want to ensure that the issue of child organ donation does not get lost in the parliamentary debate today or in the public debate that is set to follow.
I, too, thank George Foulkes for lodging the motion and I put on record my appreciation of Margaret Jamieson's excellent work on organ donation in the previous two sessions of Parliament. The Scottish Conservatives have agreed to a free vote on organ donations. The views that I will express are therefore my personal views, not those of my party.
We should not lose sight in the debate of the idea of prevention. Given the expected surge in type 2 diabetes and the fact that diabetes is the main contributory factor to kidney failure, we should first of all ensure that enough is being done to diagnose, manage and prevent diabetes.
That hundreds of people die each year because organs are not available is tragic, but the question is whether a system in which there is presumed consent is the answer. Like Roseanna Cunningham, I used to be minded towards supporting the idea of presumed consent, but I am now moving in the opposite direction.
I hope that the Government will take on board the 14 recommendations in the organ donation task force's report, which states that the recommendations could increase organ donations by 50 per cent in five years. The task force highlighted many problems, but it mainly highlighted the lack of a structured and systematic approach. There is no doubt that there is a desperate need to build up the infrastructure of staff, co-ordinators, beds and systems in order to increase the number of transplants that take place, and that that is far more urgent than imposing a system in which there is presumed consent. The success that has been attributed to the Spanish model has been as much to do with organisation and infrastructure improvements as it has been to do with presumed consent. Spain has three times as many intensive therapy unit beds and three times as many transplant doctors as the United Kingdom has. George Foulkes quoted other figures for Spain. What we do not know is how many people here were willing to give organs but were not asked to do so or could not do so because the organisation of co-ordination and retrieval was lacking or because there were insufficient ITU beds.
We know that 25 per cent of the UK's population have signed up to the organ donation register and that a higher number of people carry the donor card, but the task force report shows that fewer transplants were carried out in 2007 than in 1997. We should ask why, although more Scots have put their names on the organ donor register than people in the other parts of the UK have, we have the lowest organ donation rates in the European Union.
I do not support the concept of presumed consent. It is a contradiction in terms. Presumed consent is not consent. Consenting means agreeing or giving assent. Consent—whether to sex, marriage or donating body parts—can only be given freely by an individual. A donor of organs is a giver or provider of them. It has always been assumed that donation is by choice. Donation is willingly giving, not willingly taking. As Roseanna Cunningham said, opting out is not a familiar concept to most people. Organ donation is a matter of individual conscience and individual freedom—it is not a matter for the state.
The task force's report raises the issues of conflict of interest and ensuring that steps to facilitate organ donation are clearly lawful. It is indeed a concern that the legal position on non-heart-beating donations is unclear. Dr Kevin Gunning of Addenbrooke's hospital has said:
"If as a doctor you have turned your thoughts to your patient being a donor when they are still living, that is a real conflict".
As I said, I welcome this informed debate.
I thank the Presiding Officer for letting me speak early in the debate and apologise to members that I may have to leave before it concludes.
I congratulate George Foulkes on securing the debate. He has raised an issue with which I have been personally involved for a considerable time. In 2000, the Health and Community Care Committee asked me to act as its reporter on the subject of organ transplants, and I reported to that committee although I was not a member of it when its report went to the Parliament. When I considered the issue in detail, I found exactly the sort of arguments against presumed consent that Roseanna Cunningham and Mary Scanlon have put clearly tonight. It is certainly not an easy issue for a Government to tackle. Nevertheless, I believe that the time has come for us to do that.
During the previous session and the latter period of the session before that, the subject was discussed in the context of what happened at Alder Hey children's hospital. There was, therefore, considerable concern and alarm about the whole issue of doctors taking organs inappropriately and without permission. However, that is quite different from a context in which respect for the families remains, which must be central to any donation system. Any system that advocated the state owning the dead body and, therefore, being able to dispose of the organs as it saw fit would be anathema to me. The only system that I would be prepared to support would be one in which a sensitive approach to the family was made by a trained co-ordinator seeking the family's agreement to the donation on the basis of presumed consent.
It is easier for the family to say that they know that the deceased would not have wished their organs to be donated or that they have strong views against organ donation, and both of those views should be respected. However, being asked to consider a complex positive decision at that point is something that many families find adds to the already distressing situation of their immediate loss.
Research has clearly shown that, a year or so after the episode, the level of regret among families who have rejected the request for donation is extremely high, whereas very few of the families who have consented regret having made the decision to undertake donation. The evidence therefore shows that we need to help families to make an appropriate decision that they can live with later on. I accept entirely that that must be done in a very sensitive way.
The evidence as to whether presumed consent is the sole answer to our transplant problem is clear: it is not. It is only part of the total solution. I regret the fact that the many recommendations in the report that I was involved in preparing for the Health and Community Care Committee are simply being repeated today in the task force's recommendations—some six years later. It is also regrettable that the number of transplants has not increased.
We need to tackle the legal position regarding non-beating-heart donation. We also need to tackle—and have done, to a large extent—the issues of living donors and non-related swap donors. It is important that such issues are sorted out. However, the most important thing is that every intensive care unit in Scotland should have a co-ordinator attached to it. That should be our first step, irrespective of the forward steps that need to be taken in legislation. We should today set ourselves the goal of achieving that, as it would increase the number of transplants.
We should continue to promote the debate and, in my view, we should move to a system of soft presumed consent with a very strong opt-out, of which every citizen should be made aware.
I, too, congratulate George Foulkes on securing this debate on a very important subject that we need to debate. In his motion and in his speech, he has identified the problem extremely well. He is absolutely right to highlight the fact that, although 818 people were waiting for a transplant operation, only 50 organs were donated in Scotland last year. However, I part company with George Foulkes—and others—regarding his assertion that the current opt-in system of organ donation is unable to meet the demand that is increasingly being placed on it and that the solution is to move to a system of presumed consent.
I am sure that everyone who is taking part in the debate wants to see an increase in the number of organ donations—everybody has the same motive. Together with many MSPs, I am a donor card carrier and I am therefore on the organ donor register. The question that we must address, though, concerns the best way in which to ensure that more organ transplants take place throughout the country.
I have to ask George Foulkes and others who support so-called presumed consent why they think it is that, although almost 30 per cent of the adult population volunteer to give their organs at the time of their death—the gift of life—there were only 50 donations last year. Is it not obvious to everyone that the problem is not about getting more people on to the register? One million people throughout the UK have signed the register in the past year. It is about getting the health authorities to action the powers that were given to them by the Human Tissue (Scotland) Act 2006 and to implement all the recommendations of the task force, which reported last week.
Two years ago, the previous Health Committee took evidence on the issue and the Parliament changed the law. For the first time, we gave legal status to the organ donor register and the wishes of the deceased. If a deceased person is on the organ donor register, no further permission needs to be obtained from loved ones. The deceased's wishes are paramount. So-called soft presumed consent will go back on that, as relatives of the deceased will retain a veto over any donation. That was not the aim and objective of the legislation that we passed. I know that some argue that if we have so-called presumed consent, we will not need to ask permission from relatives; the hospital could simply go ahead with the transplant. That is not what is being advocated by most people—certainly not by George Foulkes and Richard Simpson—but it is what is being advocated by some.
There are many objections to the system of so-called presumed consent, and I list just a few. Let us look at the terminology. The national health service exists on a system of informed consent—nothing more and nothing less. Presumed consent is no consent at all. Are we really saying that the state should own our bodies when we die and that organs can be removed at its say so? I think not. We need real consent.
There are practical objections to so-called presumed consent. We have mentioned Alder Hey already. The number of organ donations fell dramatically after what happened there; do we really want that to happen?
So-called presumed consent cannot be the way forward. We need to implement the practical and welcome recommendations of the task force that were published last week. Most important, we need a step change in the attitude towards organ donation by our health professionals. We need to implement the wishes of the people who are on our organ register now. That is simply not happening.
The key to success is in getting more people to give real consent—the gift of life—and in implementing their wishes effectively. We can do that by tackling the difficult practical issues as the task force recommends. We do not do it through a system of so-called presumed consent.
I congratulate George Foulkes on securing this important debate on an issue in which I have long had an interest. Indeed, during the first session of the Parliament, Dr Richard Simpson and I discussed the possibility of a joint members' bill to introduce presumed consent. At the time, with the Alder Hey incident still fresh in the minds of the public, we decided that it would not be appropriate to do that. As neither of us was re-elected, we could not go on with the idea during the second session of Parliament, although I was pleased that John Farquhar Munro tried to progress with the issues.
On my re-election, my staff member Jared Vengrin worked full-time and exclusively on the issue with a view to introducing a member's bill on 18 July. That did not happen because of the possibility that the Scottish National Party would adopt presumed consent as a policy and progress with the matter in Government. I therefore hope that the minister will assure the chamber that that is the Government's intention.
Since 2002, there has been a 16 per cent increase in the number of transplants overall, a 26 per cent increase in the number of kidney transplants, and a 280 per cent increase in the number of non-heart-beating donors. However, the same period has also seen a 30 per cent increase in the number of patients who are listed for a transplant, and a 10 per cent fall in the number of deceased heart-beating donors, who were historically the main source of donated organs.
The lack of transplant organs has caused some to go overseas and undergo risky and expensive transplant procedures. Along with putting the patients at risk, there is great damage to those who provide the organs, no doubt because of poverty.
Presumed consent is not new; indeed, we have already heard about the position in Spain. In fact, 22 countries, 21 of which are in Europe, already have this policy. The Parliament can learn a lot from what has happened in those countries and get the best of all possible worlds. Detailed regression analysis that compared 22 countries over 10 years and took into account determinants that might affect donation rates such as gross domestic product per capita, health expenditure, religious beliefs, the legislative system and the number of deaths from traffic crashes, cerebrovascular diseases and so on concluded:
"When other determinants of donation rates are accounted for, presumed consent countries have roughly 25-30% higher donation rates than informed consent countries."
Even if families have the final say, there are fewer refusals in presumed consent countries.
This is all about saving people's lives. I understand why people become distressed when they are asked to donate their relatives' and loved ones' organs. However, as Richard Simpson and George Foulkes have rightly pointed out, many who refuse to do so have regretted the decision years later.
Spain's success, which has been mentioned by a number of members, has been attributed not just to presumed consent but to the introduction of a network of transplant co-ordinators, which has dramatically improved donor detection. When Austria introduced presumed consent, the number of donors over a decade or so quadrupled. Indeed, there is now almost no waiting list for transplants in Austria—which means, of course, that people do not have to die while on such a list.
Professional opinion is divided on this issue. The BMA, the Royal College of Surgeons of Edinburgh and the British Transplant Society are in favour of a soft opt-out system, while the Royal College of Nursing and the Scottish Transplant Co-ordinators Network oppose it. However, this debate is not about removing anyone's rights. A system of presumed consent would guarantee a person's absolute right to say that they do not wish their body to be used for transplants after they die.
As the Jewish people say, he who saves a life, saves the world entire. We should think about those suffering on waiting lists and move towards introducing a system of presumed consent.
Given the number of members who wish to speak, I am minded to accept a motion without notice, under rule 8.14.3, that the debate be extended by up to 30 minutes.
Motion moved,
That, under Rule 8.14.3, the debate be extended until 6.05 pm.—[George Foulkes.]
Motion agreed to.
I thank George Foulkes for lodging the motion and securing the debate, which I am pleased to take part in. Since his election to the Parliament, he has taken a very keen interest in organ donation. He is certainly a big man with a big voice, and I am sure that the campaigners will welcome him into their fold.
Most people accept that the nature of organ transplantation has changed and that, these days, the treatment can not only save people's lives but give many of them the opportunity to live fuller lives. For years, there have been campaigns to encourage folk to register as donors. As statistics highlighted this evening show, some of those campaigns have been successful in raising public awareness of the need for donors. Unfortunately, as members have pointed out and as briefings that we have received make clear, there never seem to be enough organs to meet the demands and needs of the people on the waiting list for transplants.
I firmly believe that the time is right for the debate to move on and for the introduction of mechanisms to allow the UK to move towards a presumed consent system with all the safeguards and guidance suggested by the BMA. I do not agree with Roseanna Cunningham or Mary—Mary—
Scanlon.
Sorry—that was a senior moment.
Although I do not agree with the position taken by Roseanna Cunningham, Mary Scanlon or Mike Rumbles, I agree that the points that they raise must be seriously discussed, debated and researched, and I very much look forward to having that debate.
As has been said, families who are faced with the sudden death of a loved one are not always in a position to think clearly and openly, and they feel vulnerable. In my opinion, that is when professionally trained people, who know how to deal with the difficult questions, need to be called in. I have spoken to families who lost loved ones suddenly and who greatly regret that they did not choose to offer their loved one's organs for transplantation. I have also spoken to people who have given the organs of their loved one for transplantation and who find great comfort in that.
I hope that I can get past this next bit, Presiding Officer. My husband had a kidney transplant—thankfully, he has had the kidney for the past 15 years. Not a day goes by when I do not thank the donor family. We need to have a debate.
I, too, am very pleased that George Foulkes has secured the debate at a time when the issue of organ donation and transplantation is rapidly moving up the political agenda. As a number of colleagues already know, the issue is of particular interest to me as the mother of a son who had a successful liver transplant very nearly 16 years ago.
After eight years of abnormal liver function due to chronic auto-immune hepatitis—and before he was considered for transplantation—my son's liver failed suddenly after a septicaemic episode. He went into a comatose state for nearly a week, following which a lightening of consciousness presented a window of opportunity for an urgent transplant, without which he would certainly have died. He was lucky, as he received a suitable donor liver within four days, and I am now the very happy granny of two lovely children who I never dreamed I would see during my son's dark teenage years of steadily deteriorating health.
I wish that it was possible to convey to those whose tragedies have allowed people such as my son to live a new, normal life the enormous value of their generous sacrifice and the happiness and fulfilment that it has given to the recipients of their loved one's organs. Believe me, my family's gratitude knows no bounds, and none of us would hesitate to consent to donation should the situation arise.
There is an urgent need to increase organ donation until there is a cure for the underlying conditions that lead to end-stage organ disease or until research allows the growth of completely new organs.
I was on the Health Committee when the Human Tissue (Scotland) Bill went through Parliament, and I thought that its provisions would lead to a significantly enhanced rate of donation. Sadly, so far that has not happened, and I am increasingly coming round to the view that it may yet be necessary to progress to a situation in which consent is presumed. There would, of course, have to be safeguards to respect the wishes of those who do not want to be donors or who do not want their relatives to be donors. Many ethical and moral issues must be considered, but there has to be a serious debate. I think that we probably all agree on that.
In the meantime, I hope that the proposals put forward last week by the organ donation task force will achieve the result that it predicts, and I look forward to the outcome of its follow-up investigation into the pros and cons of presumed consent.
An existing problem, which I believe needs to be dealt with, is that of elective ventilation of brain-dead patients in order to preserve their organs for possible transplantation. The fact that, thanks to technology, brain death can now be diagnosed very quickly when a patient is admitted to hospital has resulted in the loss of healthy organs, because the elective ventilation of a person known to be brain dead solely for the purpose of possible transplantation is not currently permitted by law—I presume that that applies equally to people on the donor register.
A retired friend and colleague who did many renal transplants during his career told me that the early diagnosis of brain death has had a significant impact on the availability of organs. That is sad, because many of the people admitted to accident and emergency with mortal head injuries are young and otherwise very healthy.
Conversely, it is not uncommon to find that the organ function of those who survive into intensive care but who die later has been compromised by ventilation and intensive treatment to the extent that their organs are not suitable for transplantation. My friend is strongly of the view that the elective ventilation of brain-dead patients for the sole purpose of transplantation, coupled with a soft opt-out law, would be of immense benefit to our society. He believes strongly that many people who are dying at present for want of available organs would be saved. I hope that the matter will be looked at carefully during the consideration of any possible change to the law on organ donation.
I am pleased that the issue has come to the fore. I hope that it will not be too long before a means is found to acquire the organs that are so desperately needed by the many people who are awaiting them and those who will require them in future—who could be any one of us or any member of our families.
I thank Lord Foulkes for bringing the debate to the chamber. As a consequence of all the coverage of the issue in the press and elsewhere, I registered online as an organ donor. The website is so busy that there is a delay in sending out the paperwork.
I turn to consent, which must be clearly and freely given and informed, and the individual concerned must have capacity. I appreciate that that subject is for another debate, when we have time to discuss the issue.
Someone who knows far more about the issue than I do said:
"It is true that organ donation rates in Spain are considerably higher than in Scotland, but this is not entirely the result of a law of presumed consent there. There is a much higher rate of acute brain injury in Spain, mainly owing to the higher number of road accidents, and there is a much more developed transplant infrastructure in place, including transplant co-ordinators in every hospital.
These factors alone are responsible for much of the increased availability of organs for transplant. Other countries in Europe also have a policy of presumed consent, but some actually have lower rates of organ donation than Scotland. When examined in detail, the evidence that a simple change in the law to presumed consent would improve donation rates is not convincing …
It is also unthinkable that a dead patient's organs would be taken without family agreement, and hence discussion with the deceased's family after brain-stem death will need to continue as before. It is vital that this discussion is informed by accurate knowledge of the patient's wishes expressed before death. This can only be guaranteed by a compulsory registration of patients' wishes, whether for or against donation.
Anything less than this form of balanced registration would be invalid as an indicator of the deceased's wishes, and could not reasonably be used to inform the discussion with the deceased's family which will still need to take place, even with a change in the law to presumed consent.
I write as a senior intensive care clinician with almost 30 years experience of dealing with brain-stem death and organ donation, and who strongly supports organ donation and transplantation.
I urge extreme caution before proceeding with a change in the law to presumed consent."
Ian Grant—a consultant surgeon at the Western infirmary—sums up the situation far more eloquently than I could have done.
I share other members' concerns. I was extremely moved by the speeches from Cathie Craigie and Nanette Milne, but we have to look very carefully at the issues that are raised in the debate, including capacity. If the aim of presumed consent is achieved and the organs of a person who was silent are removed, how do we know whether that person could have given any consent whatsoever, particularly if there is no family to talk to?
We have to take families with us. I remember Ian Grant putting forward his case in a previous debate—indeed, he went further in saying that having presumed consent would make his job harder. That is why he carefully suggests two registers of persuasive—not determinant—quality.
We all want more organ donation to take place, but I urge caution in how we move forward. I respectfully ask members to listen to the words of a man who deals with these matters, day in, day out.
I congratulate George Foulkes on securing a debate on an important and controversial topic. Among the excellent speeches, I am sure that members were particularly moved by those from Nanette Milne and Cathie Craigie, both of whom emphasised the vital role that transplantation has played in their lives through saving their loved ones.
Because of such stories, and because of the long list of people who are waiting for transplants, I take an entirely pragmatic view. If it can be demonstrated that presumed consent will increase the number of transplants, I will support it. We should consider all the evidence, especially that from other countries in Europe. I hope that the forthcoming second report from the organ donation task force will consider that evidence carefully.
On balance, having considered the evidence, I am inclined to support the move towards presumed consent. However, I would be the first to admit that the situation is complex. Public opinion is highly relevant, as is the opinion of experts. Those opinions were among the key factors in persuading me against presumed consent when I was on the Health and Community Care Committee at the time of Richard Simpson's report and again when I was a minister responsible for health. However, there are signs that public opinion is changing, which is very important. I am not entirely clear whether other people on the front line—such as transplant co-ordinators—have changed their views entirely as well. I would want to hear further from them. However, I am encouraged by polls that suggest that a majority of people now accept presumed consent. That will be essential if any system of presumed consent is to work.
Because many European countries have one variant or another of the system, we have a great deal of evidence. Spain is the most quoted example, but Christine Grahame was right to point out that more than one factor influences the Spanish position. We will have to consider all factors. Some people from Spain have said that transplant co-ordinators are key. I hope that, in Scotland and across the United Kingdom, all the recommendations in the first report of the organ donation task force will be implemented as quickly as possible.
Even if we consider all the evidence across Europe, I still feel that—as Kenneth Gibson argued—presumed consent can be identified as one factor, among others, that has increased the number of transplants in Europe. That is one of the factors that have persuaded me to change my mind.
I have one final thought to share. One of the most successful countries—perhaps the most successful—in terms of transplant rates is Belgium. It might sound odd, but the Belgians have two lists—an opt-out list and an opt-in list. That might address some of Mike Rumbles's concerns. Mike made a fair point in his speech. I was obviously involved in the proposals to change the legislation. We thought that hardening things up and giving legal force to carrying the card and being on the register—as I am sure that we all are—was a big step forward. I have said that I want my organs to be donated, and that is the final word in law. If we moved to what was simply an opt-out system, I would be concerned that I could not have that confidence. Mike Rumbles made a valid point about that. The possibility of having both opt-in and opt-out registers should therefore be considered.
I thank the Presiding Officer for accepting the motion without notice to extend the debate so that more members could participate in the debate. I am sure that I am not alone in being grateful for that.
Like others, I congratulate George Foulkes on tonight's motion. There is much on which George Foulkes and I will disagree, but on this issue we find ourselves agreeing. I feel strongly about this issue. I have a friend who suffers from cystic fibrosis. He is presently in pretty good health and in pretty good shape, but it is quite conceivable that, some day, he will need a lung transplant. At my friend's prompting, I was happy to host an event in Parliament last year on behalf of the live life then give life campaign. Many members attended that event, and some of them are here tonight. Just as we have heard moving testimony from members in this debate, people at the event were able to hear moving testimony from a young woman whose life has been absolutely transformed by a lung transplant. Perhaps even more moving was what we heard from a young woman who was desperately ill and needed a lung transplant. No one at the event could have failed to have the need for change to our organ donation system impressed upon them. I hope that we are all agreed on at least that much.
I appreciate that this is an emotive subject. In the debate, and in the run-up to it, I heard the views of those opposed to a system of presumed consent, including members of my party. As sincerely held as those views are, none sways my opinion that the time is right to move to a system of presumed consent. Mary Scanlon and Mike Rumbles suggested that we cannot presume consent. I understand where they are coming from and I accept that, in the short term, presumed consent offers some problems, primarily in the confusion that would arise in the move from the present system to the new one. However, in the long term, a system of presumed consent will be accepted and readily understood.
Christine Grahame and Malcolm Chisholm suggested that a system should be adopted that allows for people to opt in and opt out. That is an interesting idea, but I am not sure that it would work. Members of a certain vintage, including George Foulkes, will recall the 1979 devolution referendum, in which those who did not vote effectively voted no. The statistics show that even though the vast majority of people are happy to donate their organs, they never add their name to the register. In an opt-in and opt-out system, those who do neither opt out, in effect. That would be little or no improvement on the current situation.
In the run-up to the debate, I heard concerns expressed that doctors would allow certain patients to die in order to use their organs for a patient waiting for transplant. I cannot conceive of a situation in which a doctor would do that; it runs counter to the Hippocratic oath. Why would a doctor, concerned to save the life of one patient, not be concerned to save the life of another?
I understand Roseanna Cunningham's point about the incentive to publicise the opt-out. However, it is not beyond our collective wit, as legislators, to devise a system that necessitates such publicity. Indeed, it is the only way in which presumed consent will work with legitimacy. Equally, it is not beyond us to design a system sensitively, taking the interests of the donor family into account. When it is all thrown up in the air, I do not see the strength of the argument against presumed consent. All I see are hundreds of patients slowly dying on the transplant waiting list. We have it in our hands to help save their lives. I hope that when the time comes we will move towards a system of presumed consent and help those people.
I welcome the debate. I hope that the powerful speeches from throughout the chamber will set the tone for the wider debate that is necessary in Scotland on the vital issue of organ donation, which potentially affects us all.
The motion refers to the importance of raising awareness of organ donation, and I could not agree more. We have used opportunities, such as the British transplant games in Edinburgh last summer, to do just that. We are also preparing a further advertising and publicity campaign, based on last year's award-winning approach. The campaign's focus will be on getting people to put their names on the NHS organ donor register.
As was pointed out earlier, that registration counts as a form of written authorisation under the Human Tissue (Scotland) Act 2006. Authorisation means that people's wishes should be respected after their death. Where those wishes are recorded, the relatives are spared the need to make a decision about donation at what is already an appallingly difficult time for them. The campaign will also stress the need for people to tell their relatives about their decision. Relatives need to know whether someone has left written authorisation. Under the 2006 act, telling one's relatives could also count as a form of verbal authorisation.
While we are on the subject of the 2006 act, I will reflect on a couple of comments about the passage of that act two years ago. I was a member of the Health Committee and I took part in the deliberations on the Human Tissue (Scotland) Bill, which—as was rightly pointed out—happened against the backdrop of the breach of trust in the Alder Hey scandal and the lack of trust that it left behind. The important question now is whether time has moved on and we can maintain the trust that the public have in our donations system in moving to another system. We must take the public with us if we are to make the change.
This debate and other debates that we have had on organ donation are fundamentally important in getting people to join the organ donor register in the meantime. Our consideration of the Human Tissue (Scotland) Bill was a spur to me to join the register. It is interesting that Christine Grahame has signed up to the register because of this debate. I suspect that many hundreds—I hope thousands—of other people will do likewise, because of the fact that we are having this discussion.
Despite the debates and campaigns, there is still a severe shortage of donor organs. Although 29 per cent of Scottish people have put their names on the organ donor register, Scotland has the poorest donation rate in the UK, which makes it one of the worst in the European Union. We clearly need to do more, as the motion states.
The UK organ donation task force has just produced a report claiming that a 50 per cent increase in organ donation is possible over five years if the barriers to donation under the existing arrangements are removed. Its recommendations include increasing the number of donor co-ordinators, developing dedicated organ retrieval teams and mainstreaming organ donation by developing local strategies and champions. That would get us closer to the Spanish system, which achieves the best donation rates in Europe. The Spanish approach has been exported successfully to Italy and elsewhere, so why not to Scotland?
Nobody has yet addressed my point that, despite the really large addition of one million people to the UK donor register over the past year, our organ transplant rate has not increased. Does that not signify that the issue is not availability, but co-ordinators and other practical matters?
People on both sides of the donation debate agree about that. The recommendations of the task force that I have just listed are important, and we strongly back them. We have said that we will contribute the resources that are needed to establish the organ donation organisation. The Scottish transplant group has been asked to begin work on implementation immediately. No matter where we go from here, that is taken as read. We will proceed and we will take on board the important developments that I believe will deliver significant change.
We need to reach a conclusion on whether changing to a system of presumed consent would achieve an even greater increase than the one that the task force has predicted. As the Cabinet Secretary for Health and Wellbeing said when launching the task force's first report, the issue is very sensitive and views are firmly held. My own view—which is that we should move to a system of presumed consent—has changed since our debate two years ago, partly due to my having spoken to people at the event to which Jamie Hepburn referred and to many others. That is my personal view. We must recognise that others have different views. We need to examine thoroughly all the risks and benefits, many of which have been rehearsed in this evening's debate. The debate about presumed consent is effective at raising awareness of the whole organ donation issue.
Where do we go from here? The task force has been asked to take forward the debate throughout the UK. It is setting up a number of expert working groups to consider the practical issues, clinical practice, legal issues, ethical issues, cultural matters and the social marketing and media aspects. The membership of each working group will be UK-wide, and the intention is to hold a number of stakeholder events, including one in Scotland.
The evidence is not always clear-cut. There is a feeling that donation rates depend at least as much on the transplantation infrastructure—which Mike Rumbles talked about—as they do on the underlying legislative basis.
I understand that the task force is concerned that its work is seen as taking forward a foregone conclusion. It believes that it is not helpful to polarise the debate as a black-and-white choice between opting in and opting out. It wants to consider issues of consent in general and to recommend what is best in the UK and Scottish context. It will submit its report by the summer. I hope, therefore, that George Foulkes and others will allow the task force the time that it needs to complete its work. That way, we can all take a measured look at the issue, in full possession of the information that we need. I am sure that, if we take forward the debate with the tone that has been evident this evening, we will reach the right conclusion for Scotland.
Meeting closed at 18:05.