The next item of business is a members’ business debate on motion S4M-04418, in the name of Kenneth Gibson, on time to introduce presumed consent. The debate will be concluded without any question being put.
Motion debated,
That the Parliament regrets what it considers the tragic death of 43 people in Scotland last year while awaiting an organ transplant; applauds the Respect My Dying Wish campaign by NHS Greater Glasgow and Clyde urging people who wish to donate their organs after death to tell their loved ones of their desire so that their wishes can be respected, and recognises calls to introduce a system of presumed consent to help save the lives of more people awaiting organ transplant.
12:35
I thank the 43 members, many of whom will speak this afternoon, who signed the motion that has brought the debate to the chamber. I also thank the British Medical Association for its comprehensive briefing; Kim Karam for her well-researched book, “Donation: Transplantation: Conversation”; and The Sunday Times and the Evening Times for their on-going campaigns. I look forward to a constructive debate and I hope that we will make progress today to save lives and reduce suffering for hundreds of Scots each year.
Every year, about 600 to 700 people in Scotland require an organ transplant. Last year, 550 patients received a transplant, and 197 had their sight restored by a cornea transplant. People are encouraged to sign up as organ donors but, although 90 per cent of Scots support organ donation, only 30 per cent are registered donors.
Further, as has been pointed out through the on-going respect my dying wish campaign, the potential for 15 per cent of organs to be donated is lost because some families—usually while they are, understandably, very distressed—do not uphold the wishes of deceased relatives who were registered organ donors. Many families subsequently regret that, often only a day or two later.
Every death is a tragedy yet, through organ donation, one deceased person could give a new lease of life to a dozen or more people. The lungs, liver, heart, pancreas and kidneys are some of the organs that can be successfully transplanted.
Despite rising numbers of donors, it is a sad fact that Scotland lags behind much of Europe, and demand for organs rises year on year. It is encouraging that the organ donation rate in Scotland increased from 9.8 deceased donors per million population five years ago to 13 donors per million last year, but that pales in comparison with France, where there are 23 donors per million, or Spain, which has 35 donors per million.
Tragically, as a result of organ shortages, 43 Scots died last year because an organ was unavailable. The situation is most acute for patients who await a liver transplant, and one patient in five dies while waiting.
Parliament must tackle the problem. As many members know, introducing presumed consent was debated in the Parliament most recently in January 2008. Many United Kingdom Government and Scottish Government drives have been made to increase the number of donors, but it is now time to take more effective action. I fully agree with the statement of Sheila Bird and John Harris in the BMJ, who argued:
“Twenty years after the UK’s first confidential audit, we continue to jeopardise substantial quality adjusted life years ... for those awaiting transplantation by chasing a holy grail of enhanced consent by means other than presumption.”
The previous UK Government set up the organ donation task force, which looked into the possibility of establishing an opt-out system. Controversially, the task force recommended no change to current policy and argued for a renewed effort to increase the number of donors who opt in. The task force suggested that that might be achieved through the establishment of a UK-wide team of hospital-based organ champions. I will return to that point later.
It would perhaps be convenient to leave the argument at that and simply defer to the final recommendations of the task force, which Parliament debated in March 2008. However, the task force had commissioned research on the impact of presumed consent on donation rates, which it appeared to contradict directly. For example, the assessment team found that presumed consent policies generally lead to increases of about 25 per cent in the number of donated organs. It concluded:
“Presumed consent is associated with increased organ donation rates, even when other factors are accounted for.”
It is clear from myriad studies that there is growing public support for a shift towards presumed consent—support is reported to be as high as 70-plus per cent. Presumed consent also enjoys the support of the British Medical Association, the Scotland Patients Association, the British Heart Foundation, the Royal College of Surgeons, the Cystic Fibrosis Trust, the Scottish Kidney Federation and the National Kidney Federation, among others.
Of course, organ donation is a sensitive issue, and it is important that patient autonomy remains. We could move to a policy of soft presumed consent, which makes the wishes of patients and families paramount and protects children and people who do not have the capacity to decide. The preferred soft opt-out policy that the British Medical Association has put forward would safeguard such rights.
A soft opt-out allows people who do not want their organs to be donated to sign up to a database, which would make it explicitly clear that donation is against their wishes. That would be complemented by an additional safeguard whereby, if an individual had not opted out, family members would be consulted to ascertain whether they knew of any objections. Furthermore, all relatives would be advised before organ removal, which would not proceed if it caused distress to relatives, such as those with certain deeply held religious convictions.
Before such a system was introduced, a high-profile information campaign to make the public aware of it would be essential. I understand that, in 2011-12 alone, the Scottish Government spent £0.5 million on raising awareness of and encouraging organ donor registration, and a new campaign was launched only three days ago. There is no reason why such funding could not be used to inform people of the change; media coverage would undoubtedly help, too.
Across Europe, 24 countries have a form of presumed consent. As has been demonstrated in Spain, Belgium and France, soft opt-out has a number of benefits: not only does it respect the rights of patients and families but the donation rates are much higher than they are here or, indeed, in countries such as Austria, where hard opt-out policies in which relatives have no say are pursued. Although this is of secondary importance, it is worth noting that maintaining an opt-out database could be less costly than maintaining the current one, especially when one considers that fewer people would be likely to opt out of organ donation than those who currently opt in.
The Spanish model of organ donation and transplantation is regarded as among the most successful in the world. Spain has the highest rate of organ donation ever reported across an entire population, and—crucially—it has maintained that success for many years. It has overseen discernible increases in organ donation and transplant activities since its overarching and consistent framework was established in 1989. That framework incorporates a network of highly motivated hospital doctors who personally take charge of the donation process—a task that involves opening up an empathetic dialogue with relatives of the deceased at the earliest possible opportunity. That role could be fulfilled by the organ champions that the organ donation task force called for a few years ago.
The donation rate in Spain has risen from 14.3 per million in 1989 to 35 per million now with the implementation of that model, and other countries have endeavoured to set up similar systems. In Italy, for example, organ donations per million in Tuscany quadrupled in a decade after the establishment of a similar programme.
After many years of discussion and debate, it is time for the Scottish Government and the Parliament to take decisive action to improve the life chances and quality of life and to reduce the needless suffering of hundreds of Scots. The soft opt-out option would save dozens of lives every single year. I know that the Cabinet Secretary for Health and Wellbeing backed such a policy in a previous life, and I hope that the minister will do so today.
This is a popular debate, so speeches should be a maximum of four minutes. If members were to take a bit less time, I would be obliged to them.
12:42
I congratulate Kenny Gibson on securing the debate and apologise profusely to you, Presiding Officer, and to him and my colleagues, as I will have to leave the chamber at the conclusion of my speech.
I know that Mr Gibson will not take it amiss when I say that I do not often find myself able to support the parliamentary motions that he lodges, but he has my full support on the motion and issue that we are discussing.
Some 650 people in the UK are waiting for a donor organ. That is 650 people who are unable to live their lives to the full and who have to cope with pain and discomfort every day, and 650 people and their families who are living with stress and anxiety in wondering when or if an organ that is a match for them might become available. Those 650 people know that, with the medical advances of recent years, a replacement organ is likely to be successful and to transform their life, freeing them from the restrictions that their ill health imposes. Often, a replacement organ allows people to go back to work and to live a full and meaningful life.
It is significant that, when asked, some 90 per cent of people support organ donation, but fewer than 50 per cent are registered on the national health service organ donor register. There is an even more depressing figure. As Mr Gibson said, Scotland has one of the lowest organ donation rates in the world, at approximately 13 per million. That suggests to me that people in Scotland are dying unnecessarily because some of us simply have not got round to signing up as donors.
That is why I support the motion, why I was so pleased to sign up to the Evening Times campaign, and why I congratulate NHS Greater Glasgow and Clyde on its respect my dying wish campaign. I recognise, as Mr Gibson does, that there must be safeguards to ensure that vulnerable people are not exploited or coerced, and I believe that young people under 16 should be exempt. There will, of course, be people whose religious beliefs do not allow organ donation, and there will be occasions when bereaved individuals have extreme concerns about their loved one’s organs being harvested. We must respect those views, but sensible solutions work elsewhere and they can work here, too.
In my lifetime, the first organ transplant took place in the UK, the world’s first heart transplant was carried out and the organ donor scheme that we have today was launched. We have come a long way, but it is time to go further and adopt the kind of scheme that has increased organ donation in other countries by between 25 and 30 per cent. If we achieved the same percentage increase, we would take 195 people off the waiting list. Surely, for the sake of those 195 people and their families, it is time to change to a system of presumed consent. I sincerely hope that Kenny Gibson’s motion leads to progress on the matter, and I look forward to playing my part in future debates on legislation in the area.
12:45
I congratulate my colleague and friend Kenneth Gibson on bringing this members’ business debate to the chamber.
If I may, I will present a personal story. Members might recall that, in February this year, I related in the chamber the story of my daughter Caroline, who died 21 months ago. Her wish was to donate her organs so that other people would have the gift of life, or perhaps of recovering sight. As a youngster, Caroline had a firm belief that that would be her wish. Unfortunately, she did not realise that she would have that wish at such a young age.
Caroline’s condition meant that her organs could not be used. However, she had healthy eyes, and the tissues from her corneas were transplanted.
Many people are perhaps not aware that, when people agree for the organs or tissues of their loved one to be removed and transplanted, they undergo a process during which they have to complete an authorisation and patient assessment. That came as a surprise to me and my family.
Having just lost our daughter—for Fiona, it was her sister—we were presented with the assessment. We had the support of the chaplain at Aberdeen royal infirmary, James Falconer, to whom we are eternally grateful, and we also had a transplant co-ordinator who sat with us and explained the process.
The process is an administrative one that I suppose takes away the personal issues. There was a great deal of explanation and sensitivity. To an extent, there was an apology that we had to go through the process, but we had to go through it to ensure that everything was correct and that we could proceed with the donation of Caroline’s organs or corneas. That is when we learned that Caroline’s organs were not suitable for transplant.
I believe that the process ensures that organ donation is carried out only when there is consent. Therefore, with presumed consent, which I support fully, the soft option is available. There is a built-in safeguard in case the families, relatives or partners, or others who are next to the person who has just lost their life, do not wish to proceed.
I feel that my daughter gave life to another, not because she saved a life but because she has perhaps given someone the ability to lead a new life. I hope that her corneas have given someone the sight that allows them to live their life as fully as possible. We should support presumed consent. Like Patricia Ferguson, I sincerely hope that, one day, we can support legislation on the issue. Once again, I congratulate Kenneth Gibson on bringing the issue to the chamber.
12:49
I congratulate Kenneth Gibson on lodging an important motion, and I apologise to him, to the Presiding Officer and to the minister, because I must leave the chamber shortly. I am sponsoring the launch of the national dementia carers action network, which takes place in committee room 3 at 1 o’clock.
The figure of 650—the number of patients who are waiting for a transplant in the UK—has been much quoted. We should also remember that 43 people died last year while waiting for a transplant. In view of the figures, I take an entirely pragmatic view of the subject and will support any policies that bring about more organ donations. In coming to such a decision, I would want to listen, in particular, to people who are closely involved with the service and to look at the evidence from other countries.
A figure that was perhaps not well known until relatively recently is that 15 per cent of potential organs for donation are lost because relatives do not follow the stated wishes of their loved ones. That figure led to the establishment of the respect my dying wish campaign, which was launched recently. I strongly support the campaign, and I am sure that all members are impressed by how it is using Facebook and Twitter to get the message out. Along with many people, I have done everything that I can do to promote and support the campaign.
I do not think that any member would not support the campaign. However, an interesting point is that the leader of the campaign, Professor Kevin Rooney, is not persuaded of the benefits of an opt-out system. In The Sunday Times on 7 October he is quoted as saying that such an approach could be counterproductive. He went on to say:
“As pro-organ donation, I think you risk losing more people than gaining them.”
Those words gave me pause for thought. The point is that relatives are much more likely to agree to organ donation if their loved one had previously expressed a positive view. Indeed, figures from the campaign back that up. It appears that 90 per cent of relatives will say yes if the person had expressed a positive view, whereas only 40 per cent say yes if no such view had been expressed.
Under the current system, relatives’ views are always respected. That is not necessary under the Human Tissue (Scotland) Act 2006—which introduced the concept of authorisation—as, strictly speaking, the views of relatives can be overridden. However, I think that we are all speaking about a context in which relatives’ wishes are respected.
I am therefore a little worried about the loss of a positive list, given the evidence that relatives are much more likely to say yes if their loved one had expressed a positive wish to donate, as opposed to failing to express a negative wish—if that is the correct way to describe the opt-out system. The issue gives me pause for thought.
As I said in a previous debate on the matter, it appears that Belgium has two lists: an opt-in list and an opt-out list. The system seems cumbersome and I do not entirely see how it would work successfully in practice, but I am told that Belgium is the most successful country in Europe in terms of organ donation, so perhaps we ought to look at the system, which gets round the problem that the lack of a positive list would cause by having two lists.
I am entirely open-minded about opt-out and I would certainly support it if I was convinced that it would lead to more organ donation. I certainly have no objection in principle to an opt-out system, but I am not fully persuaded—although, of course, I will read the other speeches in the debate later. I conclude by saying that I am a strong supporter of the respect my dying wish campaign, which I hope goes from strength to strength.
12:54
As other members did, I congratulate Kenny Gibson on securing this important debate.
Coming as I do from a substantially medical family, the demise of people is something to which I have been close for much of my life. The motion asks that the Parliament
“recognises calls to introduce a system of presumed consent”,
but I would go further and support a position of positive advocacy for presumed consent, coupled, of course, with respect for people who regard the remains of deceased relatives differently from the way in which I do.
Malcolm Chisholm made international comparisons, and it is important that we look further at them. One of my nieces is the transplant co-ordinator for Queensland in Australia. When my father-in-law died at a comparatively early age some 40 years ago, his entire remains were donated for medical research and the training of medical students. It was interesting that we had his funeral in the absence of a coffin, which changed the dynamic and emotional charge for all who attended, because we were in a much more positive place, thought more about my late father-in-law’s achievements and contributions, and were less fixated on his remains.
My mother-in-law, who died much later, wished the same for her, but for practical reasons we were unable to have her preserved for research within the 48-hour limit that applies, because she had the grave misfortune to die on the first day of a three-day weekend—sometimes those things happen. My wife and I have left instructions that others are to have the use of any and all our remains.
Each of us will have achievements in our lives that we can look back on with pride and, if we are lucky, others will remember them after we depart and confer on us a degree of immortality. However, how much more our contribution is when we allow someone else to live after we no longer do. Modern medical technology can keep many living beyond the point of failure of critical organs. Most of us will be familiar with kidney dialysis, but fewer will be aware of the professional, social and practical cost of living on dialysis. When a kidney failure sufferer gets a transplant, it not only prolongs their life but dynamically changes it.
The majority of people in our country die without making a will. We have substantial evidence that people are broadly reluctant to engage with the issue of their own mortality—we know that people simply like not to think about it. Like others, I think that it is time to think positively about two actions. First, we should give legal force to the deceased’s clearly expressed desire for their organs to be used after their death. We must consider making their wish in that regard paramount. After all, we can make a will about our tangible assets, so it is time to think about doing the same for our mortal remains.
Secondly, we should move to the presumption that the organs of the newly deceased may be re-used. There would have to be strong protections for those of faith or other beliefs to ensure that it is not a repugnant act for those affected. It is not a matter for hasty legislation and we would need to consult widely, but other countries have done it and we ought to be able to.
From personal experience, I know that national health service staff find it delicate and difficult to talk to people about imminent demise. We must consider training NHS staff in that regard.
As I said, other countries have moved to the presumption of organ donation and it is time for us to do likewise. The respect my dying wish campaign is absolutely excellent and, like others, I am happy to support it.
12:58
I thank Kenny Gibson for securing the debate. I am delighted to take part in this important debate on presumed consent for organ donation in Scotland. I know that the subject is particularly sensitive and I recognise that a wide range of views are held on the proposed adoption of such a system.
I acknowledge the serious and difficult circumstances that are faced by thousands of people who are currently on the waiting list for organ transplant operations. I am sure that people on all sides of the debate would agree that positive actions need to be taken urgently to address that situation. At this time, more than 600 Scottish people are on the waiting list for a transplant operation, and on average three people die each day as a result of no suitable organs being available in time.
The campaign to raise awareness of the issue by NHS Greater Glasgow and Clyde and the Evening Times has highlighted some of the key issues that need to be fully considered in the course of the debate, principally whether an opt-out system would result in a greater number of organs being made available for transplant and how many lives would subsequently be saved.
As we heard in earlier speeches, about 40 per cent of people in Scotland have signed up to the organ donation register. That compares favourably with a number of international examples of opt-in systems that are similar to the UK model of the organ donation register. However, international examples of opt-out systems show that organ donations tend to be between 25 and 30 per cent higher under such systems, compared with systems in which individuals have to register to donate. That trend has been consistent, and it illustrates that the adoption of a new system in Scotland could play a vital role in saving lives.
Recent studies of public support for organ donation have found the intention to register to be as high as 90 per cent while actual registration is as low as 25 per cent in some parts of the UK. That is strong evidence that an opt-in system could increase access for those who are unaware of the current process and encourage greater awareness of the impact that organ donation can have. I believe that many more Scots than are currently on the organ donor list would be in favour of registering. They might have not registered only as a result of a lack of information or the time constraints that are involved in their leading busy and active lives. The comparatively high percentage who have already registered as donors suggests that our population is receptive to the idea of organ donation and that many more would be comfortable with being added to the list of potential donors in the future.
Although I support the adoption of an opt-out process and believe that the benefits of such a system would outweigh the administrative challenges of its operation, it would have to be accompanied by high-quality and readily available information on how to opt out. It would be unacceptable to have large numbers of people registered as donors who would be unhappy with that arrangement, and it would be unacceptable to cause unnecessary distress to families after the death of a loved one. That is why the process of opting out should be made simple and patients should routinely be asked for their continued consent at all available opportunities.
It is clear that we have a crisis in organ donation in Scotland and tough decisions have to be made to rectify that devastating reality. An opt-out system would act as a prompt for those who are in favour of registering to have the process completed for them, and many lives would undoubtedly be saved as a result.
Given the number of members who still wish to speak in the debate, I am minded to accept a motion without notice from Kenneth Gibson, under rule 8.14.3, that the debate be extended.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Kenneth Gibson.]
Motion agreed to.
13:03
I join others in congratulating Kenny Gibson on securing the debate, and I thank the Cystic Fibrosis Trust, the Scottish Kidney Federation, the British Heart Foundation Scotland and British Medical Association Scotland for their informative and helpful joint briefing. I hope that Dennis Robertson does not mind my singling him out, but I also want to thank him for his moving testimony. I appreciate his having the strength of character to come here and talk about what can only have been a very painful experience.
We had a debate on the issue previously, on 24 January 2008. It was a members’ business debate that was secured by our departed colleague, Lord Foulkes. I recall that Kenny Gibson spoke on that day, too. In that debate, I said that part of my motivation for speaking was that I have a friend with cystic fibrosis, who may some day require a lung transplant. That also forms part of my motivation today. I said:
“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.”—[Official Report, 24 January 2008; c 5559.]
He contacted me in the past few days to say that he will be assessed for a lung transplant on 17 December. Obviously, I wish him well. I have to say, though, that even if he is assessed as requiring a lung transplant, under our current system there is no guarantee that he will get it.
Nothing has changed since the debate in January 2008 to alter my view that the time is right to go for a system of presumed consent. Indeed, if anything my belief is deeper, given the experience of the intervening period. As Patricia Ferguson mentioned, some 650 individuals in Scotland are waiting for a donor organ. Indeed, the briefing that I mentioned states:
“Every day, throughout the UK, three people die waiting for a donated organ.”
I make that to be more than 5,000 people who have died across the UK in the period since we had the debate in 2008. Members will forgive me if my calculations are slightly wrong, but that is a significant number of people. Of course, not all those lives would have been saved if we had had a system of presumed consent, but I believe that many could have been.
We know that support for donation exists and that it is widespread. Kenny Gibson made the point that up to 90 per cent of people support organ donation, but for whatever reason less than half of Scotland’s population is registered on the NHS donor register. We have to square that circle, and the question is how we do that. There is big support for donation but lower levels of registration, so it is right to consider how we increase organ donation. I reflect on the fact that 70 per cent of the population support an opt-out scheme.
I will finish by touching on some concerns that have been expressed about such a scheme. It has been suggested that some people have philosophical, moral or religious objections to any opt-out scheme. If those individuals seriously hold such strong beliefs, I cannot see how they will do anything other than opt out. Regarding those who are unable to consent, it is clear that we can design a system so that those who cannot consent will not be included. Those people would be under the age of 16 or 18—there is perhaps an argument for either age. Vulnerable adults would of course not be included in the system. The great red herring has not been thrown out today, I am glad to say, but I have heard it said that some doctors will wilfully neglect some patients so that they can get their organs for other patients. That will clearly not happen and it runs counter to the Hippocratic oath.
We hear those concerns, but it is not beyond us to design a system that takes account of them. I congratulate Kenny Gibson on securing today’s debate and I hope that it is not long before we debate legislation on this matter.
Thank you. Once again, I appeal for brevity.
13:07
I congratulate Kenneth Gibson and thank him for bringing forward this debate.
A few years ago I had the chance to be a bone marrow donor, but that experience is not what I want to talk about today. Rather, I simply say that to put what I will say in context. By making a blood donation, a marrow donation, or perhaps a living kidney donation, we are giving a gift and we are benefiting from a unique and rewarding opportunity. It is a gift that is in our own gift.
An organ donation after death should be no different, but Kenny Gibson was right to say that under the current system we have no guarantee that decisions taken in life will be respected in death. We know that 90 per cent of Scots support organ donation, but that fewer than half of us carry the donor card. However, only a tiny percentage of us will die in circumstances in which organ donation might be possible. At present, the gift is not our own, but rather might be for our relatives to make for us.
Despite progress in improving our system, the fundamental problem with our register and the way in which we ask people to make this difficult choice remains. I believe that a change from an opt-in to an opt-out register would help to support families who are unsure of what they should do—and we know that many families who say no go on to regret the choice they made for their loved one. Such a change would mean that those who wish to donate could have greater confidence that their wishes would be respected and we know, because the evidence tells us, that it would increase the number of donations.
That simple change would save lives. The change would be simple and there is evidence that 70 per cent of us already support such a move, even though we have not yet had the detailed debate that might reassure many of those who have concerns. The change is not one that I instinctively supported, but I came to understand it as others helped to bust the myths of so-called presumed consent. Whether there is an opt-in or opt-out register, the fundamental choice remains the same. The choice to give remains something that we should celebrate, not take for granted.
Faced as lawmakers with 650 people on organ waiting lists, we have the responsibility not to remove the choice but to make the choice as easy as possible. More than 40 members have signed this motion—I make an effort to sign as many of Mr Gibson’s many motions as I can—and almost 60 of us signed a previous motion recognising the Evening Times campaign on this matter, which was supported by 10,000 of the paper’s readers.
With the Government’s support, we could make this change and save lives. I called the change simple, but I acknowledge that reassurance would be required. As Patricia Ferguson and others have pointed out, safeguards would be complex; new procedures would need to be detailed; and, as Kenny Gibson rightly made clear, a significant public information campaign would be essential before we could use any new register. Even if we all agreed today to do this, change would be years off and, in the meantime, more people will die.
For that reason, I consider the debate to be both timely and urgent. As the new Cabinet Secretary for Health and Wellbeing has previously indicated his personal support for opt-outs, I hope that the minister will indicate when he sums up whether the Scottish Government will introduce a bill to achieve the change that we seek. If the Government is not minded to legislate, I can tell the chamber that I have had initial discussions with the non-Government bills unit and the BMA and am considering lodging as an alternative way forward a proposal modelled on the bill that Labour has introduced in the Welsh Assembly.
At this week’s meeting of the Health and Sport Committee, the cabinet secretary said that although he often looked to the Opposition for ideas he very often did not like the ones he saw. In truth—and as speeches from all round the chamber have demonstrated—this is not a party-political matter, but I ask the Government to meet me, perhaps Mr Gibson and any other member who would like to be involved in making this change happen. After all, this change, which is in our gift, would save lives.
13:11
As with the debate in 2008, I am speaking personally on this matter. Funnily enough, in the previous debate, I took very much the same line as the Government: I am certainly sympathetic to the arguments that are being promoted but, at that point, I was not persuaded that the correct approach was to change the law.
I thought that Kenny Gibson very effectively set out the medical imperative underpinning all this and the Government is to be congratulated on the actions that it has taken over the past few years to improve the opt-in for many people. Its campaign was successful and another one is now under way. Of course, the lesson might be that our campaigns have to be sustained and that we have to find ever more imaginative ways and opportunities to encourage people who are applying for documents to opt in at those points. We should also bear in mind one consideration that was highlighted in 2008, and which is still pertinent, when we cite Spain as one of the nations whose example we should be following. The fact is that other countries are much more effective than we are in processing and using the donations of organs that many people have offered.
I am slightly uncomfortable with the process that has been identified in the briefing and detailed in the debate and ask members to consider what it would involve. For a start, every adult member of society would have to be contacted and would have to make a conscious decision, and then all that information would have to be collected and processed without error and established on a database where it could be referred to, again without error. Given everything else that has happened in the health service and elsewhere in life in relation to the security and effectiveness of information systems, I have to say that I am not confident that such a proposition can be delivered. I am particularly uncomfortable with and concerned by the effect on public opinion if it came to be shown that organs were being removed from people who had sought not to be part of that process but whose information had been incorrectly processed. That would undermine and damage public confidence, which, as members have pointed out, is extremely high and in favour of the principle of organ donation.
I do not suggest that those issues are insurmountable, or that there is not work that could be done to seek a path or a process by which my concerns could be addressed. I do not know whether those concerns are well founded, but they strike me as potential concerns that could have a counterproductive effect. It is a little like Malcolm Chisholm—he identified that he is willing to be persuaded, but is not necessarily yet persuaded that, if we turn on its head the process that currently enjoys 90 per cent public support, we will retain that public support.
I am willing for work to be done, but I would be uncomfortable if we were simply to commit to the proposition that we are about to make a change from the current process to an opt-out process. I remain sympathetic to the opt-out process, but am not yet persuaded of it.
13:15
I congratulate Kenneth Gibson on securing the debate. Most of the points that I was going to make have been made, so I will try to be as brief as possible.
“You can’t take them with you” is something that we often hear when we talk about organ donation. It is a fundamental truth, nevertheless. Organ donation is an issue that evokes strong emotion. After all, organs constitute our bodies. How much more personal can we get? However, the current position should also evoke strong emotions. When we consider the urgent demand for organs in Scotland, it is a great shame that people are dying without registering to become an organ donor. It is a great pity that many who would be happy to donate their organs in order to save a life did not get round to registering.
Reference has been made to the BMA poll. Other polls have found the figure to be much higher. We need to ask why comparatively few Scots are registered donors and, most important, we need to find a system in which the number of people needing organs more closely matches the number of organs available.
As ever, we would be well advised to look to our neighbours for some guidance when considering solutions. In Europe, more than 20 countries operate some form of opt-out system. As other members have said, Spain has the highest level of donation in the world. Belgium is a close second but Scotland is a long way behind, with only 13 donations per million in 2010. Nevertheless, there are some positives. We currently have a higher percentage of our population on the organ donation register than any other part of the UK. In 2010, 37 per cent of Scots signed up, compared with 29 per cent of people in the rest of the UK. Even in Scotland, there is significant local variation in the percentage of people on the register. In the Highlands, 47 per cent are on the register, but in the Western Isles it is only 28 per cent.
Given the widespread public support for organ donation, the rate of people dying, ultimately unnecessarily, as highlighted in Kenneth Gibson’s motion, is shameful. I agree with other members that we need to look at the issue in a slightly pragmatic way. While I am happy to support the motion, I hope that any future legislative change will strike a workable balance between the strongly held objections of the minorities, particularly those with religious beliefs, and the desperate need of people who are seriously ill in favour of extending their life and improving the quality of their life.
13:18
It is not often that it can be said, particularly at this time on a Thursday, that Parliament is showing itself at its best, but that has very much been the case in this debate. I join other members in congratulating Kenny Gibson on a compelling speech, and on pursuing the motion with great tenacity, as he does all his motions. I congratulate him on securing the debate.
The motion notes with regret
“the tragic death of 43 people in Scotland last year while awaiting an organ transplant”.
It is probably worth putting on record the gratitude of everybody in this chamber for the work done by medical professionals and others, most important those who make the difficult and selfless decision to donate organs and, indeed, their families. That has resulted in 266 organs being retrieved from 81 deceased donors in Scotland in the past year, and 59 living donors donating one of their kidneys.
I thank the BMA and the other organisations for a detailed and cogent briefing for the debate. Like Kenny Gibson, I thank Kim Karam, who not only is an authority on the issue but acts as a research assistant to my colleague Tavish Scott. I commend her book, “Donation: Transplantation: Conversation”, to all members, not least because its purchase secures a £5 donation to my Movember campaign in aid of prostate cancer, but also because it is one of the most comprehensive and authoritative books on the issue.
Kim Karam refers to an emotionally complex journey. In this instance, she is talking about the journey that is made by somebody who is going through the process of deciding whether to offer their organs for transplant and those who are in receipt of those organs. However, I think that the phrase also alludes to the challenge that faces legislators. The issue is not just about a legal change. Many members have made that point and Jackson Carlaw made an interesting and persuasive counter-argument in that regard. This is not just about a change in the law; there is a great deal that we need to do around that, not least to stimulate the public debate that, hopefully, this debate forms a part of, but also to raise public awareness and ensure that people debate these difficult, complex and sensitive issues far more thoroughly.
In that sense, I agree with Malcolm Chisholm that the NHS Greater Glasgow and Clyde campaign addresses one aspect that is a shortcoming in the law as it currently stands, which involves people’s wishes not appearing to be respected as often as they should be. The use of social media recognises the need to stimulate the debate as widely as possible. Likewise, the Evening News is to be commended for its opt for life campaign.
However, aside from the petitions and articles that the campaigns have involved, the important element is the stimulation of the debate. Every member has referred to the widespread public support for organ donation in Scotland and the disconnect between that and the lesser number of people who sign up to the organ donor register. Roderick Campbell rightly pointed out that, in a UK context, Scotland is performing relatively well but, in an international context, we have a great deal to learn.
There are complexities and sensitivities around the issue, as others have said. Any system of presumed consent has to continue to involve the families. It is a leap too far to try to exclude them at this stage. Dennis Robertson, in yet another emotional and powerful speech, set out some of the reasons why that is the case. Children and vulnerable adults fall into the category that we are concerned about. However, we will still have an active decision that must be made.
As Kim Karam has pointed out, discussions about opt-out and opt-in systems should not distract us from discussing the complex issues of organ donation as a whole. The Spanish system works better not because it is an opt-out system but for a range of reasons, including media support, better education, public acceptance of donation as the normal expectation after brainstem death, better infrastructure and having co-ordinators spend longer with families to talk through the process and expectations.
Mr McArthur, you must conclude.
We are on that complex journey at the moment. I look forward to continuing to take part in these debates, and I congratulate Kenneth Gibson, again, on securing today’s debate.
13:23
I congratulate Kenneth Gibson on securing today’s debate on presumed consent. It is a subject about which I feel strongly.
I will be speaking today mainly from my very personal experience of the present organ donation system and I will discuss the tremendous impact that I believe moving to a system of presumed consent could have on the lives of those on the transplant waiting lists, and on their families.
Almost five years ago to the day, a man was given the phone call that he had been waiting on for more than 10 years. He was called and told that a heart was available for him and that he should come into hospital to prepare for his transplant operation. He had taken ill 10 years before, as I said, and had been struggling with the diagnosed heart condition ever since, with his health gradually deteriorating all the time.
That man and his family made the trip to the hospital and said their goodbyes on the Saturday night, full of hope that the operation would lead to a much better quality of life. Unfortunately that was not the case. After the operation he was placed in intensive care, as expected, but the hoped-for recovery just did not happen.
I do not feel that the fact that he did not recover was a result of a failing in the care that he received from the NHS consultants who carried out the operation or the intensive care nurses, who sat vigilantly by his bedside 24/7 during the recovery period. The reason he did not recover was because his kidneys and other organs failed as a result of having had to work harder in the previous 10 years to compensate for the heart condition, and they just were not strong enough to cope with the operation.
A matter of days after the surgery, he died at the age of just 47—a young man given the average age of death. He left behind a wife and a family of four children—two boys and two girls—the oldest of whom was 22 and the youngest of whom lost her dad at the age of 13. Today, he would have been 52 and would have been so proud to meet his first grandson, Charlie, who was born just a few months ago. That is just one of the many family milestones missed over the past five years, and there will be many more in the years to come when his presence will be sorely missed.
Of course, it is naive to expect everyone to survive a major heart operation such as a heart transplant, but it is common sense that, for the person to be given the best chance of survival, they should have the operation as soon as possible after they have been placed on the waiting list. That is where the debate comes in. If we can follow the lead of the Welsh Government and push for a system of presumed consent—a system for which there is broad support in the chamber, albeit that some people have concerns about how that would be worked through, although I think that those can be overcome—we can immediately boost the number of organs that are available for transplant, so that people will get access to operations sooner and, put simply, we can save lives.
I pay tribute to the Evening Times for the fantastic work that it has done through its campaign for an opt-out system. During the campaign, it has highlighted research—as have others today—that shows that, although 90 per cent of people are in favour of organ donation, less than half of the population are on the organ donor register. Speaking personally—and echoing a point that was made by Mr Stevenson—I think that the only thing that prevented me from going on the organ donor register previously was my unwillingness, as a young man, to confront my own mortality. That is a silly reason, when you think about it, and we could overcome that by having a system of presumed consent.
Some members will know whom I was speaking of earlier, and others will probably have guessed that the reason that I have been able to speak personally about organ donation is that the man I described was my dad, who was lost to me, my mum and my brothers and sisters at such a young age. That is why I feel so strongly about the subject, why I supported the motion, why I am speaking today and why I would like the Government to introduce a system of presumed consent in Scotland.
13:27
I, too, congratulate Kenny Gibson on securing the debate and share his huge regret—as we all do—at the avoidable deaths reflected in the individual stories that we have heard today. I am on the donor register, but I have substantial reservations about the proposal of presumed consent. I will argue caution on presumed consent on two fronts: the principle and the practical.
The principle of consent is that it must be informed and clearly expressed, and the person consenting must have capacity. The proposition is that consent will be presumed in the absence of registration on an opt-out register. I note in passing that the fact that 90 per cent of the public support organ donation does not mean that 90 per cent of the public want to donate their organs—they may support it for other people.
At the moment, almost 40 per cent of the Scottish people are on the donor register, but we know that that does not mean that the rest do not want to donate. Many of them simply will not get around to it in their ordinary, busy lives. As Mark Griffin said, we also do not like to think of our own deaths, especially when we are very young. If we accept that, why should someone’s failing to opt out not also be because, like most people, they simply do not get around to it? We could make opt-out compulsory, but I cannot see—as Jackson Carlaw rightly said—how the entire population could be captured in that way.
The population would be the database and there would be lots of publicity to enable people to opt out if they so wished. There would also be a failsafe with regard to the relatives of any deceased individual.
I am just coming to that. However, if publicity campaigns for an opt-in system secured only 40 per cent, I cannot see how publicity campaigns for an opt-out system would make the system watertight.
How can we say that someone’s wishes are clearly expressed? Further, if we presume consent, we presume capacity and capacity reaches far further—as Liam McArthur rightly said—than simply age. That would be a serious erosion of a basic tenet of consent that consent can be given only if someone has capacity.
Turning to the practicalities, in the short time available I want to quote from a now retired consultant anaesthetist in the accident and emergency department at the Western in Edinburgh who has 30 years’ experience of organ donation. He says:
“I think I would find it difficult to re-assure grieving relatives that their loved one who had just died really did want to give his organs based on the fact that he had not registered an opt-out.”
So what is being argued for would be counterproductive. He continues:
“at present ... The possibility of organ donation may come up spontaneously from the family, but most often we broach the subject usually after the first set of brain stem death tests. We ask whether the deceased expressed any wishes about donation and what were their views on the matter. It is amazing how hard information about the deceased’s wishes as expressed on the donor register removes any doubt, and relatives are immediately able to agree to a donation. I have personally never had a family refuse a retrieval where the deceased held a donor card or was on the register”.
That is from a consultant who was involved in the first multi-organ donation in Dundee. As consultant in charge of the general and neuro intensive care unit at the Western from 1998 to 2002, he fostered a positive attitude to donation. He has seen how families have come to terms with their grief at the sudden loss of a loved one and how the gift of the loved one’s organs has helped with that. He says:
“Please do not put this goodwill at risk for an unproven benefit in terms of numbers of available organs. If goodwill is lost, the potential losses of available organs could be much greater.”
Of course I support the ends, but we must be very careful that the means are not counterproductive.
13:31
Like others, I congratulate Kenny Gibson on securing time for this important debate. I thank all members who contributed, particularly those who have shared their personal experience around organ donation, which has been extremely powerful. I recognise that this is a topic on which people hold strong views, but I am sure that all of us share the ultimate goal of finding a way to address the growing shortage of organs for transplantation.
As members are aware, we do not currently have a policy of opt-out here in Scotland and that position is informed by the recommendations of the organ donation task force, which considered the issue in great detail. It may be helpful if I go over some of the reasons why the task force did not recommend a move to an opt-out system. The task force highlighted what health professionals told it about their concerns about the potentially negative implications that a move to opt-out could have for clinical practice, as alluded to by Jackson Carlaw and further referred to by Christine Grahame. There was also a suggestion that, if opt-out were introduced, some intensive care practitioners might opt out of participating in the donation programme. I am sure that all members recognise that that could have potentially very serious consequences, as many of the organ donation task force’s recommendations are dependent upon practitioners’ co-operation.
Several members have also made reference to experience of such schemes in other parts of the world, in particular in Europe. The task force report commented on the fact that high donation rates in other European countries are often seen as the product of an opt-out system. The task force heard from experts in Spain, which has among the highest rates of organ donation in the world and has an opt-out scheme that was introduced by the Spanish Government back in 1979. However, those experts were clear that presumed consent was not the reason for their success. Donation rates started to go up in Spain only when changes were made to the transplant infrastructure, not the law on consent. That infrastructure change took place in 1989—Kenny Gibson referred to the increasing numbers of transplants from that point on in Spain. It is also worth noting that the United States, which has a consistently higher donation rate than many parts of Europe, do not have an opt-out system.
The minister has articulated the point that I made at the end of my speech about there being many other factors to bear in mind when looking at the Spanish example. Nevertheless, a presumed consent arrangement remains in Spain. Presumably, the concerns of the medical professionals that he referred to were the same in Spain, too, but a way was found to get round those and the other issues that Jackson Carlaw and Christine Grahame raised.
Sure, I appreciate Liam McArthur’s point. I am going through the particular points raised to show some of the issues that the task force considered at the time and the complexities in this area. It is reasonable for the task force to have concluded that although moving to an opt-out system might deliver some benefits, doing so also carries significant risks and the potential danger of making the situation worse.
The point that I made in my opening speech was that the task force, in looking at all the different aspects of opt-out policies across Europe, came to the conclusion that, all else being equal, soft opt-out increases the number of organs available for donation by 25 to 30 per cent, which would therefore save lives.
I do not want the debate to become polarised, with members either for or against opt-out. I am setting out some of the evidence that was presented to the task force when it considered the matter, after which that expert group presented its recommendations.
It may be helpful if I take members through some of the detail of the progress that has been made—of which there has been a great deal—in Scotland in recent years. As a Government, we are committed to implementing the recommendations of the organ donation task force, which have the goal of increasing the number of deceased organ donors by 50 per cent by 2013. In Scotland, we achieved that target one year early. We now have more than 40 per cent of the population on the register compared with the 31 per cent UK average.
We have also developed work to strengthen the infrastructure across NHS Scotland. Specifically, we have appointed seven additional organ donation specialist nurses; we have employed clinical leads for organ donation in every large hospital across the country; and we have established organ donation committees in every NHS board.
Unlike other parts of the UK, we continue to run high-profile national publicity campaigns to raise awareness about organ donation annually. Members will be aware that I launched the new campaign earlier this week. That campaign encourages people to talk about organ donation and going on the donor register. Importantly, the campaign encourages people who are on the register to explain to their friends and relatives what their views are.
The campaign is supported by a new Organ Donation Scotland website. Between November 2012 and March 2013, we are also sending out 200,000 direct mail packs to Scots about the campaign, and information will be available in supermarkets and shopping centres over the coming weeks and months. As in previous years, I believe that the campaign will prove to be successful.
In Scotland, we have legislation that allows everyone from the age of 12 to make their own decision about whether or not they want to donate their organs. That is based on the principle of authorisation, which is intended to convey that people have the right to express, during their life time, how they wish their body to be dealt with after death. The expectation is that those wishes will be respected. It is telling that Scotland has the highest authorisation rate in the UK for donations after brainstem death. It is just below 80 per cent, which compares very favourably with the UK average of 63 per cent.
Members will recognise that the developments over the past three years have started to make a real difference. In 2011-12, there were 81 deceased organ donors in Scotland—the highest number ever. There were also the highest number of transplants, the highest proportion of our population signing up to the register and the highest authorisation rate for donations after brainstem death. However, for the sake of the 600 or so people in Scotland who are on the waiting list for new organs, we must ensure that those improvements are sustainable.
That is why we have said that opt-out is not completely off the agenda. There is a commitment to review the position throughout the UK in 2013, and we will take part in that review. The Welsh Assembly is currently looking to move to a system of soft opt-out, and I am sure that we will learn more from its experience. However, we must acknowledge that progress has been made without an opt-out system and recognise the real risks that present themselves with such a system.
It is important to emphasise to all members that, no matter our position on opt-out, we share the same overarching aim of increasing the number of organ donors in Scotland. We all want to ensure that as many people as possible can benefit from the wonderful, life-saving gift that organ donors provide. I have no doubt that, over the coming year, we will have more debate and discussion on the issue, and I am grateful for the contributions that members have made this afternoon.
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