– in the Scottish Parliament on 9th February 2016.
The next item of business is a debate on motion S4M-15128, in the name of Anne McTaggart, on the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill.
It is my great privilege to open this debate, to welcome key stakeholders and their families to the public gallery and to speak to my motion that the Parliament agrees to the general principles of the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill.
Today, we will debate and vote on whether we as a Parliament agree to the general principles of the bill—that is, whether we agree with its overall purpose, which is ultimately to introduce a soft opt-out system of organ donation in Scotland. This debate is not about whether we agree with every specific provision in the bill. That is what the amending stages of the parliamentary process for bills are for. If members agree that Scotland should have a soft opt-out system of organ donation, they should vote for the bill tonight. If they are against the introduction of an opt-out system, they should vote against it. That is the decision that we will make today.
It has taken me almost two years to reach this point, and it would be absolutely devastating to all those who have participated and built up their expectations if that time has been wasted. Time is a luxury that those who are waiting on an organ transplant do not have. Tragically, not everyone who started this journey with us is here today to hear the debate. That is the reality.
It has been a huge privilege to hear the personal stories of those whose lives have been affected by waiting on an organ transplant and those who have been given the gift of life. From the bottom of my heart, I sincerely thank them for sharing their experiences. I know that it has not been easy for them. The bill is for them. Members should be in no doubt that people want us to introduce a soft opt-out system of organ donation, not at some point in the future, but right here and right now.
I also place on the record my thanks to the members of the Health and Sport Committee, the Finance Committee and the Delegated Powers and Law Reform Committee for their consideration of the bill and its accompanying documents, and I thank the non-Government bills unit for all the fabulous assistance that it has provided. I thank David McColgan of the British Heart Foundation and Caroline Wilson of the Glasgow Evening Times for their total support over the past two years. Last but not least, I thank my wonderful team for all their hard work, patience and support. They care as passionately as I do about the bill.
As I said, the bill has a single purpose—to introduce a soft opt-out system of organ donation in Scotland. If there is the will—and the political will—to do so, we can agree at a later date the mechanics of how we implement the system. Let us be clear—as I have always been from the bill’s conception—that the bill as introduced is not the final word but can be amended at later stages. The bill is necessary as people in Scotland still die every year while waiting on an organ transplant.
Does Anne McTaggart agree that some of the difficulties with the bill, such as those that relate to proxies, are complex issues for which no apparent solution springs quickly to mind, at least for those of us who participated in the Health and Sport Committee’s deliberations? Does she agree that it would therefore be difficult, in the short timescale that we have before the dissolution of Parliament, to lodge amendments and give those issues the careful consideration that they need?
No—I do not agree that that is the case. We have had bills to which up to 200 amendments have been lodged, so I do not agree that the issue of proxies need be a difficulty. I add that the provisions on proxies keep us in line with the United Kingdom structure.
As I said, the bill has a single purpose: to introduce a soft opt-out system. Things need to change.
The minister has asked that we do not concentrate on the annual organ donation rates, but look at the long-term trends instead. Every reduction in donations means that lives are lost, and it is right that we should be concerned when donation and transplant rates decrease significantly, not just for one year, but for the second year in a row. Last year, deceased donor rates fell by almost 8 per cent and deceased donor transplants fell by 12 per cent. This year’s data look just as worrying, with an expected 16 per cent reduction in deceased donor rates. The minister did not provide any explanation for that disturbing trend or any sense of urgency in determining why those rates are falling so rapidly.
People want us to take action now. We have the opportunity to turn that trend around by agreeing to pass the bill and implement a soft opt-out system for organ donation, which is a tried-and-tested system that works successfully in many countries around the world; by changing people’s thoughts about organ donation, from being something that they would rather not think about to something that they take a let’s-discuss approach to; by reducing the instances of families being asked to make a decision on behalf of a loved one while unaware of their wishes; and by honouring the wishes of those who have opted in through reducing the number of instances in which a person’s views are overruled.
We have a pretty good idea of how many lives that could save. Despite improvements, we enjoy nowhere near the rates of deceased donations that our European neighbours experience. They have more than 50 years of experience and knowledge of the matter.
I congratulate Ms McTaggart on bringing forward the proposal. She talked about the possibility of extra donors. Does she agree with the figures that the British Heart Foundation Scotland has come up with, which show that there will be around 70 extra donors a year if a soft opt-out scheme is introduced?
Yes, I certainly agree with the British Heart Foundation Scotland.
Let us be clear. There is a price to be paid for delaying the decision. I have never said that the proposal is a silver bullet, but an opt-out system that is part of an effective organ donation strategy can and will improve organ donation.
The legislative process takes time. It has taken me two years to get to this point. Please do not let that time be wasted by making it necessary to start the whole process again. Dr Sue Robertson of the British Medical Association summed it up perfectly when she said:
“All the time we waste now means that more lives will be lost.”
We have a pretty good idea of just how many lives will be lost, as Kevin Stewart just mentioned. NHS Blood and Transplant gave some figures to the Health and Sport Committee. It believes that the bill could result in an extra 70-plus donors in Scotland each year. The director of organ donation and transplantation at NHSBT, Sally Johnson, described that figure as transformative. She told the Health and Sport Committee that, to put that figure into context, there are about 100 donors per year in Scotland, and 70 more would be transformative. Let us not squander our opportunity to begin that transformation today.
I agree with the committee’s finding that there is
“merit in developing a workable soft opt-out system for Scotland.”
The bill gives us the opportunity to contribute to agreeing a workable opt-out system. We should grab that opportunity with both hands. The evidence exists that opt-out systems work.
People will find it hard to understand why any MSP would decide to delay implementation at all, let alone for a number of years, when we could begin that process today.
The majority of the committee concluded that the Scottish Government should “consider legislating”—not that it should legislate, but that it should just “consider” doing so. For the avoidance of doubt, the SNP Government has had nine years to introduce legislation. This session, it had the opportunity to legislate rather than me—[Interruption.] Does Joe FitzPatrick want to intervene? No? I would have been happier for the Government to legislate—please believe me when I say that—but it refused to do so.
Over the years, we have heard lots of warm words of support for a soft opt-out system—from no less than our former and current First Ministers, Alex Salmond and Nicola Sturgeon, and even from the Minister for Public Health, Maureen Watt. What we have not heard is any commitment to legislate. Therefore, I greatly regret the decision taken by the majority of the Health and Sport Committee, who seem happy to kill off the bill. I hope that they, too, do not come to regret that decision.
The majority of the Health and Sport Committee are asking members to vote down the bill before there is even a chance to amend its details and without a guarantee of anything in its place. We will be no further forward. If members vote down the bill, they will be condemning people to wait even longer for a solution to the shortage of organs. Unfortunately, for many, that wait will be too long.
The Scottish Government has said that it wants to wait and see how the new Welsh legislation works before deciding whether to introduce its own bill. If we take that approach, people would have to wait at least five or six years for any such bill to be implemented. There is no reason why people in Scotland should be expected to wait that length of time.
As I said at the start of my speech, members are debating and voting on the general principles of the bill. Its overall purpose is to introduce a soft opt-out system of organ donation in Scotland—nothing more. Members are not voting on the detail of the opt-out system or how it will work in practice. We can consider such matters later when debating amendments; that is what stages 2 and 3 are for.
Some issues transcend politics—saving people’s lives is one of them. I ask members to look beyond these walls to the people outside them and to decide what is right for them. Is it right to be asked to wait another five or six years—or however long it may be? We have the opportunity today to save more lives. Please take it. That opportunity may not come around again for a very long time. If members believe in a soft opt-out system, they should vote with their conscience and vote yes at decision time tonight.
That the Parliament agrees to the general principles of the Transplantation (Authorisation of Removal of Organs etc.) (Scotland) Bill.
I pay tribute to Anne McTaggart. She and her staff have worked tirelessly to bring us to where we are today—debating organ donation in this chamber and raising the debate in the public domain.
I know—like all members of this Parliament—that Anne McTaggart is committed to seeing the necessary systems in place to increase organ donation. The circumstances in which someone becomes a donor, or requires a donation, are distressing. As such, it is vital that we are sensitive to the pain and the emotion of those who have lost loved ones, as well as those who are waiting for a lifeline.
Although we cannot support the bill that is before us today due to concerns with specific provisions, we are persuaded that there are merits in developing a workable soft opt-out system.
I thank the Health and Sport Committee for producing a well-considered stage 1 report. The Scottish Government supports the recommendations of the majority of the committee. As the committee heard, many professionals who currently work in the organ donation and transplantation field share our concerns about many aspects of the bill. That the doctors and specialist nurses who would have to work under the legislation have serious concerns about how it would work highlights, in my view, the significant risk in proceeding with the bill.
The Government shares the concerns that were expressed in the stage 1 report. In particular, we agree that the appointment of proxies could cause unnecessary delays and lead to conflict between a proxy and the deceased person’s family. It is vital that families do not feel marginalised in discussions about the potential donor. Such discussions are important in ensuring that organs are safe to transplant.
There is a particular concern in the case of adults with incapacity. The bill’s provisions could lock such adults into organ donation, because they could not opt out of donation themselves and a guardian could not do so for them.
On authorised investigating persons, we do not agree that the existing specialist nurses in organ donation could or should fulfil the AIP role.
NHS Blood and Transplant, which currently employs the specialist nurses, also raised concerns about the AIP role. [Interruption.]
The minister mentioned specific provisions and aspects of the bill. Can she confirm that her opposition to the bill is based on those details and not on the major theme of the bill?
I absolutely can. I will come to that.
Although some of the issues could be addressed through amendments at stage 2, others could not be.
If the member would just listen, he might understand why we are objecting to the bill. [Interruption.]
In particular, the authorised investigating persons provisions cannot be separated from the bill, because the proposed model requires AIPs to police the new system. However, the provisions cannot stay in the bill, because the involvement of AIPs and the legal and practical checks that the bill would require of them would almost certainly result in delays in the organ donation process.
In addition, as provisions on proxies appear in almost half the sections in the bill, it is unlikely that the provisions could just be removed. To make the proxy provisions work, there would need to be significant consultation to clarify the role of proxies.
In terms of proxies? There is nothing about proxies in the system at present.
Although the majority of the committee did not support the propositions in the bill, that does not mean that we should not consider developing a soft opt-out system, along with other measures to increase organ donation.
I point out that in 2005-06, 650 people were waiting for a transplant, but in 2014-15 the number was down to 143. In the intervening years, because of the progress that we have made on organ donation, more than 507 people have had organ donations that were not available in 2006-07.
I can confirm today that, in line with the committee’s recommendation, we are starting preparation for a detailed consultation on further methods to increase organ donations and transplants in Scotland, including soft opt-out.
If we are re-elected, we will take the matter forward as an early priority in the next session of Parliament and bring forward legislation as appropriate.
We have made progress in recent years. Through changes in process and support since 2008, we have seen an 82 per cent increase in the number of deceased organ donors in Scotland.
I can report that there have been 85 deceased organ donors so far in 2015-16. Members will also be interested to hear that last month we saw the highest-ever number of donors in a single month. That means that we are on course to exceed the number of donors from last year. We have also seen a 42 per cent increase in the number of deceased donor transplants undertaken since 2008 and a 21 per cent decrease in the active waiting list.
I do not deny that there could be an increase in the number of people willing to donate their organs, but does the member agree with Dr Rafael Matesanz, whom some members of the Health and Sport Committee went to visit, that law change on opt-out itself is not enough and that other things need to be in place as well? Those things are going ahead, so I want to take the opportunity to thank again the organ donation community, along with organ donors and their families, because without them the progress that we have made could not have been made.
I reiterate my thanks to Anne McTaggart for raising the issue. We are not against a soft opt-out in principle, but we have a duty to ensure that it is introduced in a way that improves donation rates and does no harm.
For the reasons that I have set out, the Scottish Government cannot support the bill, but we will instead commence work immediately on our own consultation to develop a safe, effective and workable system for Scotland.
I move amendment S4M-15128.1, to leave out from “agrees” to end and insert:
“does not agree to the general principles of the Transplantation (Authorisation of Removal of Organs etc.) (Scotland) Bill because it has serious concerns about the practical impact of the specific details in the bill that relate to organ donation rates and transplants; agrees the merits of developing a workable soft opt-out system for Scotland, and calls on the Scottish Government to commence work in preparation for a detailed consultation on further methods to increase organ donations and transplants in Scotland, including soft opt-out, as an early priority in the next parliamentary session, learning from the experiences in Wales, which is currently implementing its own opt-out legislation, and to consider bringing forward legislation as appropriate.”
I call Duncan McNeil to speak on behalf of the Health and Sport Committee.
I acknowledge, on behalf of the committee, the passion of all those who provided evidence on the bill. The committee met clinicians and nurses, faith and belief groups, families of organ donors and people who are currently awaiting a transplant or had already received one. All of them support organ donation and described it as a gift of life. I want to give special thanks to those who provided details of their own personal experience of organ donation, and I know that that was sometimes emotional and difficult for some.
During those meetings, it was clear to see how transformative organ donation could be for those who receive an organ, and how difficult the impact of the wait is for patients and families who are on the waiting list. I extend my thanks to Dr Rafael Matesanz, director of the ONT, Spain’s national transplant organisation, and his colleagues for taking the time to meet us in Madrid for what was a very informative visit with a world expert in the field. I thank the minister for her response to the committee’s report and note the reasoned amendment that has been lodged to Anne McTaggart’s motion.
The majority of the committee will be pleased to see that the Scottish Government has taken on board our recommendation at paragraph 264 and has agreed to commence work in preparation for a detailed consultation on further methods to increase organ donations and transplants in Scotland, including soft opt-out, as an early priority in the next parliamentary session. The minority of the committee will be concerned that not passing the bill today will result in delays that could have a significant impact and consequence for those 500 or more people who are on the transplant waiting list.
The bill proposes to change the system of organ donation in Scotland to a soft opt-out system, with the overall aim being
“to increase the number of organs and tissue made available for transplantation in Scotland”.
The committee unanimously supports the aim to increase organ donation rates in Scotland. However, we were in disagreement as to whether the bill would result in that.
The evidence that the committee gathered on the bill covered many different areas and opinion varied, as we have heard, on whether the bill would achieve its aim. Unfortunately, we do not have the time today to cover all that breadth of opinion, but I will mention a couple of the main provisions that caused the greatest concern to the majority of the committee, including the one on proxies.
The bill enables a person who is resident in Scotland to appoint up to three people to act as their proxy. The role of a proxy would be to make decisions about authorisation of the removal of an adult’s organs for transplantation, on the deceased person’s behalf. The proxies are contacted by the hospital in a set order until one is able to take a decision. The rest of the UK allows people to appoint up to two proxies. We recognise that there are reasons why not everyone in a family might be in contact with other members of the family, and that the ability to appoint someone else to make a decision on their behalf after death might be desirable.
However, the majority of the committee believed that the bill’s proposal to allow the appointment of up to three proxies could cause unnecessary delays to an already time-sensitive process, and could result in additional stress being placed on the donor’s family at a sensitive time. A minority of the committee agreed with the provision for a proxy to be appointed, believing that it would be a useful role for people who do not have next of kin or who do not want their family making decisions on their behalf, such as looked-after children.
The other provision that I want to mention is the role of the proposed authorised investigating person. That person is described as being a health professional whose role is to determine whether a deceased adult’s organs can lawfully be removed and used for transplantation. That would be done by deciding whether six pre-conditions had been met. The member in charge of the bill noted that she envisaged the AIP role being carried out by a specialist nurse in organ donation, but in the bill it would be for the Scottish Government and the NHS to decide which staff members would perform the role.
The majority of members of the committee do not consider that the AIP role could be carried out by a specialist nurse for organ donation, as their role is significantly different from that which is proposed for the AIP. They also have concerns that the introduction of the AIP role could cause possible time delays in the organ donation process that could lead to viable organs being lost and families possibly being alienated. The minority of members of the committee believe that the AIP role could be carried out by a specialist nurse for organ donation or another health professional.
Does Mr McNeil see a logical inconsistency in Anne McTaggart’s position that the bill could be changed by amendment and the position of the minority of members of the committee that no amendment is necessary?
The member is inviting me to express a minority opinion. As a colleague on the committee, I would ask him not to do that. I am speaking on behalf of the committee today and trying to do a balancing act. I will not be drawn into criticising the member who introduced the bill. I hope that Mike MacKenzie is able to accept that.
Irrespective of whether the bill is passed, we call on the Scottish Government to consider a range of actions to increase organ donation rates, including structural changes to the organ donation system such as additional specialist nurses and consultants, and more intensive care beds. We also consider that publicity and awareness raising about organ donation should be a priority.
As a committee, we understand Anne McTaggart’s aim of increasing organ donation rates in Scotland and we welcome the debate that the bill has sparked. After detailed scrutiny of the bill, however, a majority of the committee did not support the general principles of the bill; a minority believed that the bill should go ahead. The whole committee agrees that more must be done to increase organ donation rates in Scotland. I look forward to the minister’s closing remarks to hear how quickly we can progress with her amendment.
I pay tribute to Anne McTaggart for introducing the bill. Today, she gives us the opportunity to vote for a bill that would save lives.
According to evidence that the Health and Sport Committee received, the bill would increase donations by up to 75 per cent. Even those who have concerns about the bill concede that it would increase donations, albeit marginally. I understand that the minister repeated that concession today.
On average, every donor can save three lives; they could save up to eight, but the average is three. Even at the margins, the bill would save many lives. No one is suggesting that this is the only thing that needs to be done to increase donation—we need to do much more. Many such interventions are in the hands of the Scottish Government now and do not need legislation.
The bill would change the focus of donation so that the presumption was that someone would wish to donate. Survey after survey has found that the vast majority of Scottish people want to donate, but that is not borne out by donation rates. The bill would also allow those who do not wish to donate to continue to opt out.
When we decide on the general principles of the bill, we need to put ourselves in the situation of those who are waiting on the organ transplant list and of their families and loved ones. What would they want us to do today? What would we do if it was us or our loved ones who were waiting? Would we say, “Wait and see. Give it some more thought”? I do not think so.
In this Parliament, we have a duty to the Scottish people, including those who are on transplant lists. We must always have their best interests at heart, as if they were our own family. Today we must do the right thing by them. Members must look to their consciences. If they can vote against the bill, put their hand on their heart and say that they did the right thing, so be it. However, we have to remember that every member must answer for their own actions. I urge members not to have this on their conscience. If they know that this is the right thing to do, I ask them to vote for the bill.
The Government’s amendment is senseless. It appears to say that the Government agrees with the general principles of the bill while saying that the Government does not agree with them. The Government cannot look both ways at once. If members agree that the bill is the right thing to do, they should vote for it. By all means amend it as it passes through Parliament, but vote for it tonight.
If Parliament votes against the bill tonight, no amount of spurious excuses will justify that. Even if the Government wins the next election and introduces its own bill early in the next session, people will have died in the intervening period. That is not reasoned; it is unreasonable.
We heard the Government make a number of excuses, the first of which was on the role of the authorised investigating person, which would be carried out by the specialist nurse in organ donation. If there are concerns about how that role is laid out in the bill, the bill can be amended at stage 2.
However, someone needs to oversee the process, deal with family and loved ones and make sure that everything is done properly. That is the case now and it would continue to be the case under the bill. If members believe that the AIP role is not required, it can be removed from the bill at stage 2. The Government has the majority in the Parliament, so it could do that at stage 2 or stage 3.
A similar point applies to proxies. Scotland is the only country in the UK that does not allow for donors to appoint proxies, but such a system is workable and works in the rest of the UK. A proxy can act on behalf of the donor and give permission for organs to be donated. The Scottish Youth Parliament told us that having a proxy is particularly important for people who are estranged from their families, such as looked-after children. It is important that their views are expressed by someone who knew them, rather than a stranger. In evidence we heard of a case where a landlord had given permission for donation because there was no family. Surely allowing someone to appoint a proxy would be better than that.
Another concern about proxies is that they would overrule the next of kin. That is a serious point. If a family were unlikely to agree to donation and the potential donor wanted to donate, the potential donor could appoint a proxy. However, in evidence it was clear that a donation would not be taken if it was likely to cause distress to the next of kin, because health professionals also have a duty of care to them.
In practice, therefore, a proxy cannot ensure donation for someone. It is difficult to accept that the wishes of the deceased will be ignored, which happens in practice today. Concerns have been expressed, but the provisions could be clarified or amended at stage 2.
The bill is simple, but it could make a difference to the number of people whose organs are donated.
I struggle with the Government's opposition to the bill. What concerns does it have that are so grave as to risk lives? The minister did not convince me today, and I wonder whether she even convinced herself.
There is time to change the Government’s mind—it can do the right thing by those who are waiting for a transplant. I can only imagine the frustration of the families of the 571 patients who are on the transplant list. We have the wherewithal to make a difference to their lives. I sincerely hope that all MSPs will look to their own consciences and vote for the bill.
I add my thanks to all the witnesses who gave evidence to the Health and Sport Committee, to the committee clerks for their hard work and support in bringing that evidence together and to the member in charge of the bill for raising the profile of the hugely important issue of organ donation. I know that Anne McTaggart is passionate about the need to increase organ donation in Scotland. There were some highly charged emotional moments during the stage 1 scrutiny of the bill.
When the committee began to take evidence on the bill, I fully expected to be recommending to parliamentary colleagues that we should support it. However, as our scrutiny progressed, I became less convinced that the provisions in Anne McTaggart’s bill would lead to the desired outcome and the ultimate increase in organ transplantation for which we all wish. I will spend a little time dealing with one or two of my concerns.
Having said that, I doubt whether there is anyone in the chamber who does not wish to see the availability of many more organs, to save and improve the lives of the many people with end-stage organ disease whose only hope of recovery at present is transplantation.
As many members know, I have a personal interest in this, because my son has just passed the 24th anniversary of his liver transplant. He would not have had those years without it, and nor would I have my two grandchildren. However, even with my motivation, it still took me more than a decade to sign up to the organ donor register. That inertia led me to think that the soft opt-out would be the solution until, as I said, we scrutinised the bill.
Spain is held up as the exemplar on organ donation, with a donor rate in 2006 of 35 donors per million of population—the highest in Europe. At that time, the UK rate was one of the lowest, at 13 donors per million of population. However, the improved donor rate in Spain was not achieved until 10 years after it adopted opt-out legislation, and we were told that the increase came about only after significant structural change to the nationally organised organ donor system. It does not seem at all clear from international evidence that legislation per se is responsible for an increase in donor rates.
It is generally accepted that, with or without a change in legislation, more can be done to increase the donor rate in Scotland. The classic approach that is in place, which involves publicity campaigns, donor registers, recording information on driving licences and education programmes in schools, has resulted in a significant improvement. Even in Spain, however, with opt-out legislation in place, it is only when discussion takes place with the family at the point of death that rates begin to show real improvement, and the Spanish see that conversation as pivotal.
In its “Organ Donation and Transplantation Activity Report 2013/14”, NHS Blood and Transplant showed that, when a specialist nurse in organ donation is involved in approaching families to ask for consent to organ donation, family approval rates go up by almost 50 per cent. A whole-hospital approach should make a difference—that means that staff across the whole hospital, and not just transplant teams, give thought to organ donation, and a specialist nurse in donation rather than an intensive care consultant is present to have the conversation with the family. I hope that that approach can be taken in Scotland, certainly in our bigger hospitals, because it has the potential to make a difference. Legislation is not necessary for that.
It is fairly widely believed that a number of provisions in the bill could be counterproductive to increasing the rate and use of organ donations. The use of proxies to make decisions about authorisation on the deceased’s behalf could result in the family being marginalised or excluded from the organ donation process. The family might be the only people with detailed knowledge about the deceased that could have a bearing on the usability of their donated organs. There was also concern that having to contact one or more proxies could result in delays, which could harm the organ donation process. We know that organs are already lost because families pull out when they regard the process as too protracted and stressful, and the bill could make matters worse.
I do not think that I have time—I am sorry.
Another contentious aspect of the bill is the role of the authorised investigating person, who is described in the policy memorandum as a health professional whose role would be
“to determine whether or not a deceased adult’s organs can lawfully be removed and used for transplantation.”
The member in charge of the bill envisages the specialist nurse in organ donation having the role of an AIP. However, NHSBT, the Scottish Council on Human Bioethics and the Law Society of Scotland all took a different view and saw a conflict of interest between the two roles.
It is clear that there are differing opinions about some major provisions of the bill as introduced. However, what influenced me more than anything was the opinions of people who are at the coalface of transplantation—people such as Professor Forsythe, transplant surgeon and lead clinician for organ donation in Scotland, and transplant nurses—who believe that the bill could have the opposite effect from what is intended. It could lead to a loss of public trust that, in the system, organs will be taken only when that is the wish of donors and their families, and an erosion of the concept of organ donation as a gift of life, which is often of great comfort to donor families at a time of grief. That is very important and must be thought through carefully before we contemplate moving to a new system.
I have no time to go into other aspects of the bill, but I am not persuaded that changing to the soft opt-out system of organ donation as proposed would in itself result in an increase in donations. However, I would like to see further enhancement of the on-going efforts to increase organ donation, and I welcome the Scottish Government’s commitment to a thorough consultation on further ways to increase donation and transplantation, including a soft opt-out system. That should be informed by the experience in Wales, which—as we know—started to implement its legislation last December. I urge the next Government to make that an early priority and, in light of the evidence presented to it, to proceed with legislation if that is what is indicated.
We will support the amendment at decision time.
We move to the open debate speeches. Sadly, we are tight for time, so each member has up to five minutes.
I support the general principles of the bill, not only because I was asked to do so by the British Medical Association, the British Heart Foundation and the Scottish Kidney Federation but because I have long supported the issue—indeed, since I was first elected to the Parliament in 1999—and I am proud to have been the first Scottish National Party member to have supported Anne McTaggart’s bill.
We must give Anne McTaggart a lot of credit. A number of members in my party and in the Labour Party have looked at introducing such a member’s bill, but she picked up the cudgels and moved forward. We know that it is extremely difficult for a member to introduce a bill, as members do not have all the institutional support of the Scottish Government. The bill that Anne McTaggart has struggled forward with is not perfect but, in terms of what it is trying to do, it is a good bill.
The issue has been debated by many people over the years. I submitted a motion on 8 October 2012 that said:
“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.”
That was three and a half years ago. The motion was signed by 43 members, including Mike MacKenzie and the minister, yet no bill was introduced.
I have been disappointed that successive Administrations have failed to pick up the cudgels on the issue. There has been plenty of time to move it forward. Although I appreciate that the Scottish Government has said that if we vote down the bill it will introduce another, we have to—as has been stated—consider the 571 people who are already waiting on the transplant list.
Soft opt-out has been used in other countries; it is not brand new. It is axiomatic to me that soft opt-out must increase donation. Members should think about what the UK Conservative Government is doing with the Trade Union Bill. Instead of people having to opt out of a trade union levy, they will have to opt in. Why is the UK Government doing that? Because people are less likely to opt in, so the number of union members contributing will be reduced, which will reduce money for the Labour Party. We know that. It is intrinsically clear that, if people have a soft opt-out from organ donation, we will—in my passionate and 100 per cent totally convinced view—have more people available to donate organs.
When Anne McTaggart came before the Finance Committee, there were issues with the bill, and we heard about some of the difficulties that the Health and Sport Committee had with it, but surely it is not beyond the ken of the Scottish Government to make the necessary amendments to ensure that the bill works, rather than leave us to wait months or years more before we can go forward. A wait of 17 years, as we have had in this Parliament, is 17 years too long.
We have had umpteen campaigns from umpteen members, but this is a chance for members to stand up and be counted. I hope that members who have signed umpteen motions and spoken in umpteen debates on the issue over the years will follow their consciences and vote for the general principles of the bill. That is what we are voting for: the general principles, not necessarily the nitty-gritty, which can be amended.
I do not want to take up other members’ time, so I will finish early. Members know clearly what my position is, and I know that a number of colleagues in my party feel the same way. I look forward to the bill being voted on positively at decision time.
I thank Anne McTaggart for all her great work on the bill, and Kenneth Gibson and those of his colleagues who have been supporting such legislation for some time—longer than I have. I changed my mind just during the course of this parliamentary session and was very happy to be in the minority of the committee in respect of the report that we are debating.
The context is the yawning gap between the large majority who wish to donate and the number who are on the register. Equally worrying is the fact that although Scotland has the highest proportion of registered donors in the four countries of the UK, we have the lowest donation rate. As Anne McTaggart reminded us, the donation rate is decreasing while three people a day die waiting for transplants.
No one is arguing that the bill itself will solve the problem. The minister quoted the Spanish professor who said that law change to provide for opt-out is not enough, but no one is saying that it is. Those of us who support opt-out are saying that we need opt-out plus other measures. Indeed, the committee report suggests a range of actions that could be carried out irrespective of what happens with the bill.
The simple fact of the matter is that it is hard to resist the evidence that we received about donors. NHSBT, the key UK body on the issue, has been quoted already. Who could be more authoritative than it? It said in written evidence that there would be 70-plus extra donors. That evidence is very compelling when we are talking about there being 100 donors currently in Scotland. Sally Johnson of NHSBT said—as Anne McTaggart reminded us—that that increase would be transformative.
There is also interesting evidence from the NHS donor task force of 2008, which commissioned research from the University of York, which examined all the available evidence and said that it all shows that changing to a soft opt-out system would be followed by increases in donation rates. The British Heart Foundation Scotland also cited the figure of 70 extra donors. It went so far as to say that there is little, if any, evidence of significant increases in transplant rates without a soft opt-out system. That is all compelling evidence.
Of course, the objective is, in general terms, to achieve a culture change that will make donation the norm, but the change would, more specifically, also enable a change in the dynamics of the conversation with the family. That is the most significant part of the organ donation process. Put simply—as, I think, one of the witnesses said—the conversation would then be along the lines of, “We’re aware that the person has no objection to organ donation,” which would in itself change the nature of the conversation with the family—that conversation would, of course, still take place.
That leads on to the role of the proxy. Concerns have been expressed about the proxy, but the key fact is that England and Wales have had a proxy role—called an appointed representative—since 2004. We received strong evidence in support of the proxy from the Scottish Youth Parliament, for example. It carried out research among many young people among whom there is strong support for the proxy role. The example was given of young people in care, who might not want their natural families to be the ones who give consent. That would apply in other situations too. If somebody does not trust their family to have the same opinion as them, why should they not appoint a proxy?
There has been much misunderstanding around the issue of having three proxies. It does not mean that all three would have to be consulted; if the first on the list was not available, the second or the third would be consulted instead, so there would be no extra delay. I think that the proxy provision can stand in the bill without amendment, but Mike MacKenzie or any other member who wants to lodge an amendment is, of course, at liberty to do so.
In relation to the authorised investigating person, the fact of the matter is that judgment is exercised now, just as judgment would have to be exercised under the bill, irrespective of whether an AIP is mentioned specifically in the bill. It is interesting that no such person is explicitly mentioned in the Welsh legislation, so it is possible to have an opt-out system without an AIP. Again, if Mike MacKenzie wants to suggest the deletion of the AIP role from the bill, that would not wreck the bill.
I am in my last minute, so I do not think that I can take an intervention.
The fact of the matter is that if people do not like the detail of the bill, they can amend it. However, we are voting today on the general principles of the bill. People should be absolutely clear about that and not pretend that they support soft opt-out in general and then vote against the bill.
Finally, 62 per cent of Scots support a soft opt-out. They will not understand it or forgive us lightly if we pass over this opportunity on the pretence—or the so-called pledge—that some kind of legislation may be introduced in the next session of Parliament.
I congratulate Malcolm Chisholm on his speech. His comments regarding the proxy role should certainly alleviate the concerns that a number of people have.
I also respect the comments that others have made. In the Parliament, we should always respect comments and contributions from members and treat them accordingly.
I commend Anne McTaggart for all her work and thank her very much for pursuing the bill with great tenacity. It is never easy, as Kenny Gibson said, to try to introduce a member’s bill. I thank the Local Government and Regeneration Committee for approving my member’s bill at stage 1, although I do not think that it will get through. I know how difficult it is to get any member’s bill through Parliament, so the great work of Anne McTaggart and her team deserves congratulations and praise.
I also pay tribute to the individuals and the many charities who work tirelessly to highlight organ donation. In particular, I mention the British Heart Foundation Scotland and Kidney Research UK, which have done an absolutely fantastic job in raising awareness about transplants and donations. Regardless of the outcome of the vote tonight, they will continue to do a great job, and I know that all members will continue to support them.
I support the principles of the bill and will vote for it tonight. I note the Health and Sport Committee’s report and the concerns that it has raised. As I said, I thank the committee for its work. A committee’s job is to look at every aspect of the bill. As other members have said, at stage 2 we can get into the nitty-gritty—as I think Anne McTaggart called it. That is when we can look at the details, but it is certainly my intention to vote for the principle of the bill at decision time. It is a free vote for members of all parties, so nobody is being harangued into doing anything that they do not want to do.
We should perhaps cool some of the language that is being used. On an issue on which feelings are running high, we should always respect the comments of others. I certainly respect Nanette Milne’s comments, coming as they do from great professional and personal experience.
While I am in the mode of congratulating, I should not forget to congratulate my colleague John Mason on the motion that he lodged highlighting the Welsh Government’s opt-out system, which is important.
I have done a good deal of work to highlight the issues with the British Heart Foundation Scotland and with Kidney Research UK, which is a fantastic charity. There are lots and lots of fun runs and marathons. I certainly have not taken part in any marathons, although I have taken part in a couple of fun runs. I remember one on which we were all dressed in purple—we had to wear purple T-shirts and people had all sorts of purple dresses and costumes on. Last year at the Glasgow Science Centre a large gathering for Kidney Research UK raised loads of money—although I cannot remember how much, off the top of my head. That event was very well supported, as such events will continue to be.
The Government has funded Kidney Research’s peer groups project, which involves working closely with Asian families. Those groups have been doing a fantastic job. I know that the Government supports Kidney Research not just with money, but with advertising. The project has been absolutely amazing. Quite a lot of folk from the gurdwara and the mosque in my Glasgow Kelvin constituency have taken part in it. The project involves people talking about what happens when people from an ethnic minority group cannot get a transplant; donation levels tend to be lower among such groups. Anything that increases donation among them through advertising, Government support and, obviously, public support can only be a good thing. I would like to hear more about the peer project. I know quite a bit about it, but I will not spend my whole time talking about it. It would be good if we were to hear a wee bit more about it.
I will support the principles of the bill at stage 1, and I wish it all the best through the trials of the Parliament.
I come to the debate informed by experience—not the experience of receipt of organ donation, but the experience of donating by a deceased relative. When my father-in-law, who was a nurse, died suddenly at the early age of 54, his widow and daughters decided that there could be no finer memorial to his life than that his death should mean life for others. In fact, they drew it wider than simply authorising use of his remains for organ donation, and he became part of the education of medical students. Their dissection of him after death helped to prepare them for their careers.
In due course, we sought the same disposal for his widow, but practical issues prevented it. Jim’s funeral had a different focus: it was less on the coffin at the front of the church—there was none—and more on the man, his contribution to the lives of others and the contribution to the future wellbeing of others that he was now making. The grieving process seemed to be easier for that knowledge. A year later, an invitation arrived from the students who had benefited from his donation to join them at the cremation of his remains. Today, Jim’s granddaughter—a nurse—is state transplant co-ordinator in Queensland, Australia.
Like many others, I had, prior to Jim’s death, given little or no thought to organ donation. My instructions to my executors are now clear and unambiguous. They are to reuse everything in any way that could benefit others. All my close relatives know that. My driving licence has the 115 code on the back that can tell others about my registration; it is one of the least understood indicators of one’s being registered for organ donation.
Our Parliament’s Health and Sport Committee has performed its task in preparing for our consideration a stage 1 report with the diligence that we always expect and almost always get. With the experience of having taken five bills through Parliament, I know how challenging it is to get the detail right, and to convert the policy intention into proper form for legislation. It is difficult with all the support that a wheen of civil servants or committee clerks can provide to a minister or convener, so how much more difficult is it for an individual MSP who is relying on the substantially more limited resources of their own knowledge and experience and the assistance of Parliament’s non-government bills unit?
When the bill was introduced, I indicated to our whips that I could not oppose its general principles because I give paramouncy to helping others and I have not changed my mind, even if the bill’s prospects of doing so have created difficulties because of the detailed expression of its principles. [Applause.]
I have great sympathy with the minister’s position and the fact that she cannot yet see a way of making the bill into something that can be implemented. However, any bill that offers even the most meagre prospect of an increase in organ donation needs us to endorse its general principles. But, and it is a significant “but”, those whose faith means that they have a different view to mine about proper disposal of human remains must not—repeat not—find themselves being forced to go against their wishes or the wishes of a deceased person.
I must say that it remains a mystery to me that I can create a will that directs how all my assets heritable and movable should be used after my death, but I cannot command how the disposal of the most personal of all that is mine—my body—is disposed of. That is for another day, perhaps in the succession bill that I expect will be introduced during the next parliamentary session. I understand the difficulties in respect of legal issues, such as confirmation of wills, which take more than the very short period of time within which decisions on organ donation have to be made.
The Government and the committee have accepted the principle of soft opt-out, and it is tremendous that there is unanimity on that. If we support the general principles of the bill at decision time, it might well be that difficulties with the bill’s detail mean that it will fall later in the parliamentary process. Well—let us test the general principles and their expression in the bill through further parliamentary process, when there will come the proper point at which to derail its progress, if that is the correct outcome.
This evening I must and shall vote in favour of our endorsing the general principles of the bill.
I congratulate Anne McTaggart on introducing the bill at a time when the need for transplants is increasing. I also thank the Health and Sport Committee for its work in scrutinising the bill. I support the bill.
Lives are being lost because of the lack of available organs. The Health and Sport Committee has made it clear that it believes that there is not enough evidence to demonstrate that implementing the soft opt-out system that the bill proposes would result in an increase in donations, but the committee also noted in its report that
“there may be merit in developing a workable soft opt-out system for Scotland.”
The Scottish Council on Human Bioethics points out that the de facto opt-out system that the Human Tissue (Scotland) Act 2006 introduced is a hybrid between an opt-out and an opt-in system. It proceeds to point out that although more than 90 per cent of the Scottish population support organ donation, only just over 40 per cent of the population are on the organ donor register. It describes that as the difference between good intentions and actual decisions.
The fact that people hesitate, or are unable, to carry an organ donor card—I do—is an impediment to increasing the donor list numbers. The British Medical Association believes that the decision not to opt out of donation is as much of a gift as a decision to opt in, so we must harness the 90 per cent support that exists among the population for organ donation and save more lives along the way.
There are examples that we can look to domestically and internationally. We can point to the world-leading example of Spain, which continuously surpasses its own record on organ donations, as well as that of Wales, which has recently implemented similar legislation. The Spanish example, with its high donation rate, can be imitated in Scotland. Its management methods, its more flexible and robust legislative framework, and its population’s awareness of the issue should be our key drivers and objectives. The Health and Sport Committee recognises that. It heard evidence on the transformative effects of organ donation for the individuals concerned and their families. A new life can be found as a result of a person being willing to make such a gift. We must promote that message among our people.
Our main goal must be to save more lives and to do so in such a way that every potential donor and family member understands that that is the case. Therefore, I am supportive of hearing more about the bill and how we can turn it into an instrument that can benefit more people. I also want to ensure that, on an ethical issue such as this, we allow no margin for error or ethical quandaries.
How will we ensure that a sustainable long-term education and awareness campaign achieves the goal of answering the right questions? What will the relationship be between family members and proxies who are appointed by the donor in the case of conflict? What do medical ethics tell us about such conflicts?
The committee noted that there are numerous other issues, as well as other perspectives, to consider. Do we have enough evidence that an opt-out system in itself would lead to an increase in organ donations? At this stage, is the NHS able to undertake the necessary structural change, to develop the specialist workforce that is needed for the organ donation system, to create the infrastructure capacity to accommodate the rise in operations and to run the necessary awareness campaign?
I believe that much stronger scrutiny of the bill is needed, but that does not warrant its defeat at stage 1. Many of the answers to the questions that I raised can be provided if the bill continues to the next stages.
However, should Parliament not agree to the bill at stage 1, I would like the minister to guarantee that it is her intention to proceed in the next session of Parliament with a consultation on further methods to increase organ donation, so that we can improve health for the thousands of people who are waiting on the transplant list. That would bring about long-term savings for the NHS, because those who received organs would live with better health, and it would allow us to talk more openly about organ donation and to drive up donation rates in our society and thereby save lives. I believe that we can start that work now with the bill that is before us. Agreeing to it at stage 1 will give us all a chance to amend it at stages 2 and 3.
This topic touches on issues of ethics, personal belief, medical evidence and health. Organ donation is a multifaceted issue that enjoys support for its end goal, but the bill must be heavily scrutinised, and the right balance must be struck between what is right and what is good.
I support the bill and shall vote for it at decision time.
I, too, congratulate Anne McTaggart. Rightly, it is an emotionally charged debate. I have every sympathy for the ends that the member wishes to achieve. I am a registered donor. It is the easiest thing to do, and I encourage people to do it: simply go online, fill in the boxes and the card arrives.
However, I do not support the bill. I turn to section 6, which no one has really addressed. My concern is to do with the state authorising consent. Although the phrase “presumed consent” is not in the bill, that is what is in the background. Notwithstanding the caveats in that section, I cannot agree to it.
How can one presume consent? That is an oxymoron. Consent is greatly defined in Scots law. The consenting party must have capacity, which they might not have because of age or mental ability. Consent must be informed; opting in and opting out both satisfy that but silence does not. Consent must be freely given, but above all it must be evidenced by the facts.
In my view, any bill that introduces the idea of a presumption of consent where there is no evidence as to the individual’s view flies in the face of a basic principle of Scots law that is tested in the courts frequently in contractual disputes, in claims of negligence and, particularly, in cases of rape and sexual assault. For me, the idea of presumed consent in the absence of any evidence of consent is unacceptable.
I will come back to solutions to that, but moving on to the practicalities I take this opportunity to quote the words of a retired consultant from the Western general hospital:
“The answer to the question ‘why now presumed consent?’ is as we have heard that there are insufficient organs available to meet the needs of those with terminal organ failure who need new organs. It is very tempting to change the ethical and legal framework in which we operate to overcome this shortage. However, to someone with little specialist legal or ethical knowledge this would appear to be a rather dodgy thing to do. As I said I am not qualified to speak with authority on the legal and ethical issues. However, as an intensivist, I have an involvement in organ donation stretching over 30 years and I feel reasonably well qualified to comment on the possible implications of presumed consent and practice of organ donation.”
There would of course be an opt-out, with people able to register their unwillingness to donate their organs in the event of sudden death. If someone felt sufficiently motivated, they could access the register, probably via a website, and opt out of donation. However, how valid would that be? How many would do that? I think that it would be difficult to reassure grieving relatives that, given that their loved one who had just died had not registered an opt-out, he or she really did want to donate their organs.
The retired consultant also stated:
“It is amazing how hard information about the deceased’s wishes as expressed on the register removes any doubt, and relatives are immediately able to agree to donation. I have personally never had a family refuse a retrieval where the deceased held a donor card or was on the register, although of course there have been exceptional cases that others have had. If we have ... compulsory registration of wishes either way, we will retain the concept of balanced and informed consent rather than cutting legal and ethical corners and I think more people will be happy to agree to organ donation.”
The consultant went on to say:
“If I seem negative about organ donation I must provide evidence to the contrary. I was first involved in organ donation as a senior registrar in the Southern General and Glasgow in 1978. I was involved in the first multi-organ donor in Dundee, and as consultant in-charge of the general and neuro ICU at the Western from 1988-2002 I personally fostered a positive attitude to donation.”
I leave members with the following thoughts. First, the principle in Scots law of consent must not be waived, even for the best of reasons and ends, but be considered very carefully. Secondly, is the solution maybe to consider a compulsory register of opt-in and opt-out, subject to exceptions on religious grounds? We would then have a clear view of what the deceased’s wishes were on death. I think that that, given the consultant’s views and the legal position on knowing what people really want and when they have given their consent—
I am sorry, but I am in my last minute.
Knowing where people are on the issue of consent would take us where we all want to be, which is to have more donors but to have them in a proper legal form.
I congratulate Anne McTaggart on bringing the bill to the chamber and taking her proposals this far through the parliamentary process. Her bill has been an important part of a genuine national conversation about organ donation in this country. That is a testament to her hard work, the hard work of Drew Smith before her, and the campaigning efforts of Kidney Research UK, the British Heart Foundation, the Evening Times and many more.
Whatever the Parliament ultimately agrees to do on the bill, the conversation that was started by the opt for life campaign has been a healthy and productive one. If it has got people out there considering organ donation and thinking about their final wishes, the debate has been worth while.
I also state at the outset of my speech that I am firmly of the view that, if the changes that we are discussing were to become law, we could give real hope to people on waiting lists and save lives. It is for that reason that I support the principles that underpin the bill, and I hope that members on all sides can do so, too.
When we last debated transplantation, I mentioned the work of the organ donation task force. It is now eight years since the task force reported on ways to improve organ donation, and the progress that has been made in that time has been welcomed, particularly by the medical profession. Its findings have shaped policy, informed the work of Government and, many believe, contributed to an increase in donation rates. Better training and co-ordination and more awareness have all made a difference, yet despite the progress in recent years, real challenges remain, and they must be overcome.
I draw the Parliament’s attention to the written evidence that the British Heart Foundation Scotland supplied to the Health and Sport Committee, according to which nearly 7,000 people in the UK are on waiting lists and three people die each day waiting for an organ. Levels of organ donation are still low by European standards. Even though 90 per cent of the public say that they support organ donation, only 32 per cent are registered as organ donors. Over 46 per cent of families refused organ donation in a single year because they did not know their relative’s wishes. Long waits and confusion about families’ wishes are costing lives, and that is why the bill is so important.
The member talks about the relationship between the donor and the family. Does she agree that that is to be challenged anyway and that it is not relevant to the bill because it is a problem whichever way we go?
Yes. I totally agree. Also, under the bill, the relatives are consulted and their wishes are taken into account as well.
For us in Scotland—a country that has already improved public education and awareness in the health professions—the next step is surely to look at new ways of increasing donation rates through legislative and cultural change and to give serious consideration to a soft opt-out. It is not just a matter of changing the law and moving towards a position of presumed consent. It is also about changing attitudes and creating a culture of openness and understanding in which we can more readily talk before we die about what we want to happen to our bodies. There should be rigorous safeguards to make sure that liberty and choice are protected and that presumed consent does not mean taking away choice.
I am not a member of the Health and Sport Committee, but I see that many of its deliberations have focused on how to ascertain what the individual’s choices are. Families should be consulted even when their loved ones have failed to opt out, to establish whether they are aware of any objections and whether proceeding with organ donation would cause distress.
I note that the committee also discussed whether the proposed changes would lead to the desired increase in organ donations. BMA Scotland, which supports the principles of the bill, accepts that it is notoriously difficult to assess the impact of opt-out legislation on donation rates. However, it also pointed to the example of Wales, where only 3 per cent have opted out from organ donation, and we can look to other examples around the world where the legislation is different yet donation levels are higher.
Opting out is not new. Across Europe, there are plenty of examples of countries that have successfully managed opt-out systems of organ donation for many years. As we have heard, the committee visited Spain, which has the highest level of organ donation in the world.
If the bill does not proceed, I hope that the Government will revisit the issue in the next session of Parliament, as it has promised. For now, I will support a soft opt-out to give real hope to all those who are waiting for a life-saving transplant, and their families. Let us choose to change and opt for life.
I have a great deal of respect for Anne McTaggart and for her passion about and conviction on organ donation, and I approached our scrutiny of her bill with more than an open mind. I actively wanted to support it.
Back then, I could find nothing in the general premise of the soft opt-out for organ donation on which the bill is founded to disagree with. It seemed to be a matter of common sense that moving from a soft opt-in system to a soft opt-out system would be bound to increase the supply of organ donors and therefore the supply of organs. It seemed straightforward, and I know that a number of my colleagues had similar views. However, during the course of the scrutiny and in the face of the evidence that we uncovered, I have been forced to change my mind—not on the general principles, but certainly on the detail in the bill.
No, thank you. We are short of time.
It is important to set the context. It is true that we saw a falling off of organ supply in 2014-15, but that is against a significantly rising trend in the supply of organ donations. Therefore, we must be doing something right, and we ought to pay heed to the advice that we received from many experts in the field who were opposed to the bill. It would be strange if we took evidence from experts and then paid no heed to it.
The evidence from across the rest of the world is not clear cut.
No, thank you. I am short of time.
Although there is a suggestion that soft opt-out systems seem to perform better, it is difficult to know whether that is purely because of the soft opt-out system—we have heard about the situation in Spain—or whether the increased organ supplies are due to other complementary factors. I think that Anne McTaggart agrees that a whole range of actions is needed to improve organ donation rates.
The member has made it quite clear that he is not taking any interventions.
The Scottish Government has informed us that action is already under way to improve the quality of conversations that are held with bereaved families.
On a point of order, Presiding Officer. I wonder whether you can help me, so that I am clear on how I will vote at decision time. Are we voting on the general principles of the bill?
Members are voting on the general principles of the bill. You are quite correct, Mr Findlay.
As I said, the Scottish Government has informed us that action is already under way to improve the quality of conversations that are held with bereaved families, which could potentially reduce family refusal rates. That seems to me to be the nub of the matter and the reason why many health professionals in the area are cautious about the soft opt-out approach. They feel that introducing an apparent compulsion for organ donation may produce an unfortunate backlash and result in a reduction in the organs that are available for transplants.
The other problematic issue that I must mention is proxies. The tensions and the potential conflict of interest between the authorised investigating person and the specialist nurses in organ donation are a further issue, which has already been mentioned. I cannot see a simple solution for those problems.
No. I am sorry, but I am short of time.
Problems are woven throughout the bill—the minister touched on that. There are very difficult and thorny issues, and it behoves us to take the time to consider and resolve them in a proper fashion that will not give rise to unintended consequences and potentially a reduction in organ donation rates. Can members imagine the tabloid headlines if there was a serious dispute between a proxy and a family, for instance?
For those reasons and on balance, I feel that I cannot support the bill at decision time, just as the majority of the committee indicated that it could not. Anne McTaggart is due great credit for taking forward the bill. She has moved the debate and the discussion on far forward, and I hope that, if the bill is not passed, she will take consolation from the commitment that the minister has given.
In the course of the afternoon, this has become the bill on which I have found myself most conflicted. I have been incredibly impressed with the speeches of those who support Anne McTaggart. As the debate has gone on, it has caused me to question my position. I have also found the debate to be quite fractious, although I understand that that has been motivated by the bill’s important content.
This is, I think, the third time that we have debated the issue, but it is by far the most important time, because a potential piece of legislation underpins our discussion. I am slightly uncomfortable at the suggestion that any one side in the discussion has the moral high ground. Everybody in this chamber is in favour of organ donation; that is not the nature of the debate. [Applause.]
It is incredibly important that we understand that we are talking about a move to what Parliament would then judge to be the best way of maximising the organ donation potential in Scotland.
In this parliamentary session, my position—had there not been a bill in Wales—would probably have been to favour a bill here in Scotland, because we need to move forwards. However, with a bill in Wales, my position has been that there was an opportunity for us to pass not just any bill, but the right bill, and for that right bill to incorporate the concerns that have been expressed to me by those who are very or somewhat unsure, as well as my own slight misgivings, which I think that I will overcome at some point to support an opt-out legislative process. In that move, it has been incredibly important that we do everything meanwhile to increase the positive donation record that we have, and that nothing we subsequently do could be used to undermine the integrity that exists in our organ donation programme.
The minister spoke about a significant increase in the number of donors and donations that we have seen. Nanette Milne spoke at length about the system in Spain, which is often alluded to, and the particular improvement that arose through having specialist nurses in organ donation as part of the whole hospital process and the critical difference that that has made in the overall number of donations that has been subsequently achieved.
I think that the member would agree that no one is saying that passing the bill would, in and of itself, be all that is required. We must make other changes, too, such as those that have been made in Spain. However, does he accept that, in making those other changes, passing the bill would be a good way to start?
That is the conflict with which I and others are wrestling. There is much more that could be done meanwhile, along the lines that Nanette Milne has suggested and within the Government’s intention to keep the process moving forward.
I accept some of Christine Grahame’s arguments, although the words “presumed consent” have been understood by those who have been discussing the issues and they have been addressed in how the debate on organ donation is progressing, so I am less concerned about that.
The Public Petitions Committee took evidence from the Welsh Government Minister for Health and Social Services. I was impressed with how the Welsh Government has progressed the issue. Therefore, I have wanted to see what happens in Wales and to learn from the experience there in order to see a bill introduced in this Parliament, presumably—this is my hope—early in the next session.
I have a personal concern. I am suspicious of the capacity of the systems in our health service to honour the wishes of those who express their view. It is one thing for a whole lot of people to opt in and for those preferences to be recorded in our information technology systems and whatever else to ensure that we know who wishes to be a donor; it is quite another thing if we were to move to the whole population opting out and our computer systems adequately ensuring that those wishes are protected and respected.
I apologise to Ms Grahame. I am nearing the end of my speech.
The concern that remains to be addressed and overcome is about the enormous reputational damage that could be done to the organ donation system in this country if we were to move to an opt-out system and, for whatever reason, someone’s wishes were to end up not being respected. That gives me cause for concern.
Anne McTaggart has brought tremendous integrity and passion to the issue, over a number of years, and I understand the dynamic that she has brought to the whole process and the debate. The Scottish Conservatives will ultimately have a free vote on any proper piece of legislation that is put before us, but at this stage the correct approach is to support the Government amendment and to look for a new bill’s introduction in the next session of the Parliament. I do not say that easily, but that is the conclusion that I stay with, even after this afternoon’s debate.
I am grateful for the opportunity to close the debate on behalf of the Scottish Labour Party.
I thank the Health and Sport Committee for its report, and I thank the committee clerks and everyone who engaged in the consultation on the proposal. I also thank the minority of committee members who took part in the debate. It is regrettable that other members, who expressed strong views in the committee, did not come to the chamber to defend their views.
I also thank everyone who has campaigned for greater organ donation rates and everyone who works in our organ donation system. Most important, I want to acknowledge everyone who is currently on the organ donation waiting list and the families of the people in Scotland who have died while awaiting the donation of a suitable organ for transplant.
If we achieve nothing else today—as seems more than likely, given the Scottish Government’s opposition to the bill—I hope that we will have at least again raised the profile of organ donation in Scotland.
I am sorry. Mr MacKenzie was reluctant to take interventions from others but is keen to intervene during other members’ speeches. I would rather make progress.
There are facts on which all members agree. Most important, we agree that there are more members of the public who express support for organ donation than there are donors who have got round to opting into the register. The unfortunate—and, I regret to say, unnecessary—consequence of that is that, despite all efforts, some of which we heard about in the debate, and some of which Labour supported in government and is supporting the current Government to pursue, there are people in Scotland who will continue to die for the lack of a suitable organ being transplanted.
In that context, I have found the debate to be extremely frustrating, and I think that some SNP members share that frustration. In our view, the principle of informed consent is not undermined by a soft opt-out register, just as the principle of autonomy is not protected by the current opt-in register. At present, 10 per cent of the potential donors who have registered their wish to make a donation have their wishes overridden by objections after their death.
Whether we have an opt-in register or a soft opt-out register, Margaret McCulloch was right to say that there is a chronic need for greater openness and more discussion about what we want to have happen to our organs after death. In our view, a major change in attitudes stands the most chance of being achieved through the major public information campaign that would have to precede a move to a soft opt-out system. That is exactly what has happened as a result of the bravery of Welsh ministers in moving to an opt-out system. I commend Wales for leading the charge for change.
I could read out the names of members and ministers who have publicly supported calls for a soft opt-out organ donation bill in Scotland but who intend to vote against further consideration being given to the bill that is before us. However, I will not do that. I will leave it to those members to reflect on why they found the time to pose with newspapers and campaigners supporting a change but are not willing to engage with the bill at the amending stages.
The SNP is having a free vote on the bill. I believe that the Conservatives are not. Is Labour having a free vote?
The Labour Party has had a public position on opt-out donation for some time. The point that I am concerned with is not whether people disagree with the bill, but that some people who have publicly supported and endorsed the campaign now intend to vote against a bill that would deliver it.
The technicalities of the bill are important. They were important three, four and five years ago. They were important when I supported and proposed the change. Those of us who supported it took the time to understand that systems and processes would need to be in place to make soft opt-out work. It is therefore regrettable that, on a vote on the general principles, we are only now being presented with the Government’s amendment, finally acknowledging that soft opt-out is part of the solution. No one has ever argued that soft opt-out alone would resolve all the issues, but we believe that it would save lives. I have absolutely no doubt that Labour members and other members—and, I am sure, Government back benchers—will engage with the Government in the next session of Parliament on measures to improve our donation rates, just as we have in the past.
What is missing from the Government’s amendment, even still, is any mention of timescales. Perhaps that means awaiting the post-implementation review in Wales before even the possibility of further consultation on how such a scheme would work in Scotland. That means that it could not be in place in the next session of Parliament either. The time needed to inform, reassure and educate the public about how an opt-out system would work makes that the case.
There are many legitimate reasons to oppose any piece of legislation, and on this issue there are strongly held views. The decision itself on whether to donate or to allow a donation to go ahead after the death of a loved one is an emotional one, but let us think of the emotions of those awaiting transplants, which must be difficult for the rest of us even to begin to comprehend. Members on this side of the chamber commend Anne McTaggart for taking up the issue. It is a source of great regret to me, as a supporter of her bill, that the Government will not allow it to be given further consideration by the Parliament. As a result of that, there will be further deaths in Scotland that I believe could have been prevented.
I support the bill in Anne McTaggart’s name, and I urge Parliament to reject the wrecking amendment in the name of Maureen Watt, which calls on us to support the principle of soft opt-out by rejecting the general principles of a soft opt-out bill.
I thank all members for their contributions to the debate. It is clear that we all want to see increased numbers of successful organ transplants for the patients in Scotland who need them. I recognise the strong feelings and the points that have been raised during the debate, but the Scottish Government and experts in the field have significant concerns about the bill and its provisions.
As I said in my opening statement, the current Scottish Government is committed to taking forward a wide-ranging consultation this year on further methods to increase organ donations, including the opt-out. We will consult from now and we will be introducing a bill in 2017. Although that will take a little longer, I feel that it is vital that we take the time to get the proposals right. Rushing through this flawed legislation would be likely to do more harm than good, by creating additional delays and legal complexities in what is already a complex process.
I do not support the soft opt-out, whether it is the Government or a member who proposes it, because of the issues that I set out in my speech, but can the minister say whether, through the consultation, she will give consideration to compulsory registration in an opt-in opt-out register with exceptions for religious or other reasons? If she could at least give it consideration, the medical practitioners would know exactly where they are.
I thank Christine Grahame for casting her legal eye on the debate. She is right to have brought up the issue of consent. We have real concerns about adults with incapacity and what the bill says in relation to that group, and the issues that she raises will certainly be addressed in our consultation.
I want to make some progress.
Although we previously wanted to wait for a full evaluation of the new opt-out system in Wales before considering Scottish legislation, we have reflected on the level of public interest and the views of the committee. To an extent, the system in Wales reflects the same culture that we have. As Malcolm Chisholm pointed out, views on this matter are shifting, and there is a disconnect between the number of people who say that they want organ donation and those who authorise it when they are in a position to do so. As someone mentioned, the youth are very much in favour of the idea, and there has been a cultural shift.
We have to reflect on the public interest, the cultural shift and what has happened in Wales so that we can take forward a bill that causes no harm. The experts are extremely concerned that we do no harm. They believe that getting the legislation wrong could be devastating to organ donation. It is important to take those views into account. For example, as Mike Mackenzie said, there is as yet no clear international evidence that conclusively proves that opt-out leads to more transplants.
Just listen for a minute.
The majority of committee members agreed with that point and, in the stage 1 report, said:
“there is not enough clear evidence to demonstrate that specifically changing to the opt-out system of organ donation as proposed in this Bill would, in of itself, result in an increase in donations.”
Earlier, the minister was talking about harm. Does she regard halving the budget for advertising organ donations to be harmful to increasing donation rates?
The way in which the Scottish Government and experts have been taking forward organ donation has not involved blanket advertising.
If Anne McTaggart would listen, she would learn what she would have known if she had been at the event in Glasgow that I was at and which she was supposed to be at. We have peer educators in the black and minority ethnic community because we know that there is a disconnect arising from the fact that, although a large number of people who are waiting for an organ transplant are from that community, that number is not matched by the number of people from that community who are on the register.
Unfortunately, that community is waiting longer than others, which is why the peer education programme that Sandra White mentioned is important. It involves people from the Scottish Government and peer educators who are enthusiastic proponents of organ donation talking to their colleagues, their families and their communities in order to ensure that there is an increase in the number of people from those communities who are on the register. That is the kind of specifically targeted campaign that we are taking forward. The work is going on in the gurdwaras, the synagogues, the mosques, the melas and so on, and I have been hugely impressed by it.
We will, of course, monitor the effectiveness of the new opt-out system in Wales to ensure that we can take account of any early lessons from that system. The consultation process will also involve an examination of non-legislative ways of increasing donation.
I would like to make some progress.
Nanette Milne made a very important point about ensuring that lessons can be learned from the organ donation nurses who are doing such a good job in Grampian and in Lothian, for example, and that everyone in intensive care units has organ donation in their minds when, sadly, someone is coming to the end of their life. Of course, new technology is available to improve the quality of organs for transplant.
To sum up, we recognise the positive aims of the bill but there are many significant issues with the drafting that mean that we cannot support it. I challenge the scaremongering of those who say that lives will be lost if we do not support the bill. There is no clear evidence to support that view. As I said in my opening statement, some of the bill’s provisions could actually make things worse, which is certainly not what we want to achieve. We must consult to ensure that the practical, legal and ethical implications of any future legislation have been fully thought-through.
We will bring forward our own legislation. However, as Jackson Carlaw said, we have to get it right in the interests of every donor and every recipient. The members of my party will have a free vote on the bill at 5.30.
I congratulate Anne McTaggart on bringing the bill to Parliament. She has been diligent in making the case for an update system of organ donation. It is literally a life and death issue.
I acknowledge the principled cross-party support throughout the chamber. Jackson Carlaw is right—we all want a system of opt-out organ donation. I particularly single out speeches from Kenny Gibson, Sandra White and John Mason. I believe that Humza Yousaf was here earlier—he supported a previous motion and I hope that he will be voting for the general principles of the bill this evening.
We should not lose sight of why we are debating the bill. It is because too many people in Scotland still die waiting for an organ transplant. The minister is asking us to delay our decision on implementing a soft opt-out system of organ donation. Unfortunately, time is a luxury that those who are on the waiting list now simply do not have. They want us to take action now and introduce a soft opt-out system.
Why should those who have already contributed to the parliamentary process be asked to do so again at some later date? They have given their view—80 per cent of those responding to the bill consultation supported the proposal and there was majority support for all of the proposals in the Health and Sport Committee’s online survey. Today, members are being asked to agree the general principles of the bill.
The minister’s amendment is confused, if I am being generous. On the one hand, it raises concern about specific details on impact but, on the other, it says that it agrees the merits of the case. Well, this is stage 1. This is when we agree whether a soft opt-out system of organ donation is the right thing for Scotland. It is about the merits of the case. The minister agrees with the merits but wants us all of us to vote the bill down. It is really simple: if members agree with the principles, they should support the bill at stage 1.
Experts tell us that an opt-out system can improve donation rates. I say to Nanette Milne that there are opportunities to do more. It is not just about the bill; it is about doing some of the things that are done in Spain. However, the bill presents an opportunity to take that first step.
The minister’s issue seems to be whether the bill, as currently drafted, will lead to the increase in organ donation that we all want to see, but that is what stage 2 is for—to look at the detail, to consider the bill line by line and even to amend it, in the same way that all bills can be amended at stages 2 and 3.
As the member knows, we are on the same side of the argument. However, will she join me in welcoming the fact that, whatever outcome we achieve at 5.30 tonight, this is an idea that will continue? Even if the member and I favour a particular approach, if Parliament does not vote for the bill at decision time we should welcome the Government’s commitment to soft opt-out as a way forward.
I want to make progress now. That is a view shared by the member. I do not want the Government’s reasoned amendment to succeed because it introduces delay, which I find unacceptable.
We should not accept that there is somehow too little time left to amend the bill. The bill is shorter and less complex than the Land Reform (Scotland) Bill, and there have been more than 200 amendments lodged to it. The bill can be amended before dissolution. We are legislating on the supplement to the land and buildings transaction tax within a matter of weeks, so there is the time and capacity to take the bill through Parliament. It is our role to make any necessary improvements—it is not beyond us to do that. That is the parliamentary process. We should be using it.
Saving more lives by increasing organ donation rates should not be a party political issue. It is therefore extremely disappointing that the minister is effectively refusing to participate in the normal parliamentary process. Instead, she is declaring the bill as unamendable. I struggle with that.
It is the very first time in this Parliament that a minister has come and said that a bill is unamendable but agreed with the general principles. The minster’s approach is in stark contrast to that taken by her fellow minister Paul Wheelhouse. He recently had a look at another member’s bill, the Apologies (Scotland) Bill. While Mr Wheelhouse supported the aims of the bill, he had concerns about some of the provisions, but he did not declare the bill to be unamendable.
I am sorry; I need to make progress.
Instead, Mr Wheelhouse worked with the member to suggest amendments, and the Apologies (Scotland) Bill was passed in this Parliament last month.
In relation to the bill before us, the minister is not only wrong but just about alone in her view that the bill cannot be amended. There is no good reason not to progress the bill; let it go forward to the amending stages. There is no reason why the Parliament should have to start again, repeating the consultation and legislative process next session. What message are we sending to those waiting for transplants, their families and their clinicians if we do not make progress?
We have not heard a proper timescale from the minister. Delaying decisions will cost lives. We know that the Welsh Government is not due to carry out its evaluation until 2017. If the Scottish Government is going to take account of that, which it says it will, its own bill will be later. It is asking people to wait two, three or maybe four years for something to happen. According to the organisation NHS Blood and Transplant, the bill could lead to an increase in 70-plus donors in Scotland, which would be transformational.
We all know the devastating impact on people’s lives of waiting for a transplant. Delaying a decision to implement a soft opt-out system is an extremely difficult position to defend. I heard what Christine Grahame said—I have enormous respect for her—when she talked about how members may not have the knowledge and skill to understand complex legal issues, and I accept that.
However, the Scottish Government has an army of civil servants with a great deal of knowledge that can be brought to stage 2 in amendments to improve the bill.
The minister has said that the measures in the bill are not those that the Government would put in place if it had introduced its own bill, but she has not told us what measures she would put in place. The reason why is that the Scottish Government has not thought that through. The minister’s official told the committee:
“We have not yet considered how we would introduce an opt-out system if we wanted to do that in Scotland.” —[Official Report, Health and Sport Committee, 8 December 2015; c 16.]
It is a matter that affects the lives of hundreds of people the length and breadth of Scotland—one that requires urgent action, not delay. It is not something that can be delayed for three to four years, if it is introduced at all. Let us remember—[Interruption.]
The fact is that the Scottish Government has had nine years to introduce a bill, there has been a petition from 10,000 people, and there have been previous debates and motions across this Parliament in which views have been shared across parties. There has even been a campaign by the Evening Times, and yet there has been no work done on what an opt-out system would look like.
If that does not provide members, who are obviously hoping for an imminent Scottish Government opt-out bill, the clearest indication of the Government’s actual intentions, I do not know what will. To be clear, in its reasoned amendment the Scottish Government has not committed to soft opt-out legislation; it has committed to a detailed consultation.
Today we have a choice: the Scottish Government and all members have a chance to introduce a soft opt-out system in Scotland by supporting and then amending this bill. It is not a party political issue. Those whose lives are on hold while they wait for an organ transplant do not care whether it is a member’s bill or a Scottish Government bill that is passed, but they do care that we take the issue seriously and take urgent action to improve donation rates.
Members have a choice tonight; let us vote for what we know is right.