Organ Donation

– in the Scottish Parliament at on 1 May 2014.

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Photo of Tricia Marwick Tricia Marwick None

The next item of business is a debate on motion S4M-09847, in the name of David Stewart, on petition 1453, on organ donation in Scotland. At this stage, I must indicate to speakers in the open debate that I intend to reduce the time for their speeches from six to five minutes, so you should start working on them now. That will get us back on track for decision time at 5 o’clock.

I call David Stewart to speak to and move the motion on behalf of the Public Petitions Committee. Mr Stewart, you may have your full 13 minutes.

Photo of David Stewart David Stewart Labour

Thank you very much, Presiding Officer.

The petitions system is the window to our Parliament. It is etched in our history and has been echoed in Parliaments across the globe. Today’s debate is an example of how to petition effectively, and I praise the Evening Times and Kidney Research UK in Scotland for their first-class work. Caroline Wilson from the Evening Times is in the gallery, and I congratulate her on her work.

I welcome the opportunity that has been given to the Parliament this afternoon to highlight the issues in the petition and the evidence that the committee has received to date in the course of its work. The Evening Times petition, which was lodged in November 2012, has attracted more than 20,000 supporters. It calls on the Scottish Government to introduce an opt-out system of organ donation in Scotland in order to help save more lives.

On 11 December 2012, Tony Carlin, the editor of the Evening Times, told my committee:

“I could speak for hours about some of the stories that we have been told or have come across in the course of our campaign: the anguish of parents who have watched their children needlessly die of genetic conditions that could have been resolved with a transplant; the desperation of a man who flew to India in the hope of buying a kidney; and the deep satisfaction that is felt by grieving relatives who have, following the death of loved ones, consoled themselves with the knowledge that others have been given the gift of life. However, there is little point in detailing those stories, because each of you knows or has read of people in the same position—waiting for the phone call that may never come while living a life of increasing misery, fear and despair.”—[Official Report, Public Petitions Committee, 11 December 2012; c 939.]

The UK currently has an opt-in system, although next year opt-out legislation will come into force in Wales. However, for now, I or any other person can actively decide to donate organs or tissue by joining the organ donor register; in other words, we are required to actively opt in. An opt-out system requires an individual to explicitly make it known, while they are alive, that they are not in favour of their organs being used for transplant when they die. The key difference is that an opt-in system involves people expressly stating a wish that their organs and tissue can be used for transplant on their death, while an opt-out system assumes that organs and tissue are available for transplant unless there is a specific instruction to the contrary. The petitioner and others argue that moving to an opt-out system will increase the availability of organs for transplant.

The decisions that we in Scotland and indeed any other country need to make involve ethical, legal, medical, organisational and societal components, and the important balance to be struck is between respecting the views and rights of a potential donor and obtaining organs in an efficient manner. In the United Kingdom, at present, the fundamental principle is that organs are donated actively, freely, voluntarily and unconditionally, using a soft opt-in system.

Organ donation is not a new topic for the Scottish Parliament or, indeed, for the Evening Times, which has campaigned on the matter for a number of years. The Parliament’s health committees have done work on this area, and my friend George Foulkes held a members’ business debate on presumed consent in the previous session. In early 2008, the Parliament mandated the report of the UK organ donation task force. The task force had been asked to identify barriers to organ donation and the factors that might have a bearing on donation rates across the UK. It spent two years considering the issues in detail before reaching its conclusions and recommendations. It did not recommend making any change in 2008 to the UK’s existing system, but recommended that action be taken within the existing frameworks to increase levels of organ donation by 50 per cent within five years.

The priority is to promote organ donation more widely and to raise levels of consent, improve public awareness and ensure best practice at all stages of the donation process. The task force noted that countries with an opt-out system tended to have higher organ donation rates but said:

“presumed consent alone does not explain the variation in organ donation rates between … different countries .... Many other factors affect donation rates.”

The legal and ethical implications of introducing an opt-out system were considered in detail by the task force, and it did not identify any barriers to the introduction of a soft opt-out system, as long as sufficient safeguards were built in. In 2008, the position of the task force, which was accepted by the Scottish Government, was that, although a move to an opt-out system would bring real benefits, there were risks.

The task force made 14 recommendations for increasing organ donation throughout the UK without moving to an opt-out system. It recommended that, after a period of five years, progress could be reviewed, at which point the option of an opt-out system could be considered again.

I recall that, when we debated that report and its conclusions, the then-Cabinet Secretary for Health and Wellbeing said that, although the Scottish Government was not considering an opt-out system for Scotland, she had increasing sympathy with presumed consent and that the Scottish Government planned to review its position in five years’ time.

It is now six years on. Public support for change is growing, and I pay tribute to the contribution that has been made by the Evening Times with regard to keeping the issue in the spotlight and engaging and influencing the public on what can be an emotive subject.

Scotland has not been standing still on this issue since 2008. The Scottish Government has been running annual organ donation campaigns, the Scottish campaign has a website and, last year, the Scottish Government published its donation and transplantation plan covering the period from 2013 to 2020. Further, NHS Greater Glasgow and Clyde has run the respect my dying wish campaign to reduce the frequency with which relatives refuse to allow the use of organs, even when the deceased person had signed up to the donor register.

It is very welcome to see that sign-ups to the donor register are high in Scotland. As of the end of March 2014, more than 2 million people living in Scotland had made their organ donation wishes known by joining the UK organ donor register—that is around 40 per cent of the Scottish population, against a UK average of 32 per cent. However, as of March this year, there were still more than 600 people in Scotland waiting for an organ to become available.

I have already mentioned that the Welsh Assembly recently legislated on the matter. In acknowledgement of that, in February, the Public Petitions Committee held a useful and thought-provoking evidence session with Mark Drakeford, the Welsh Minister for Health and Social Services. After hearing about what has been done in Wales and what was achieved with cross-party agreement, the view of the Public Petitions Committee was that it would be good to take stock of where we are in Scotland on organ donation and levels of consent and see whether there is more that we should be doing to maintain progress. Mark Drakeford told us that, last year, 35 people on the Welsh organ waiting list died. Those deaths were the main motivation for making the changes and for increasing the efforts to improve consent rates in Wales.

The debate in the Welsh Assembly began in 2008. The minister was keen to stress that deemed consent was not something that Wales moved towards quickly, but over the course of a number of years. By the time of the Welsh Assembly elections in 2011, three of the four political parties that are represented in the Assembly had included a commitment in their manifestos to legislate to create a system of deemed consent. After the elections, the discussion process continued, leading up to the legislation being passed. The legislation is due to come into force in December 2015 and there will have been a two-year lead-in to the legislation going live.

Photo of Christine Grahame Christine Grahame Scottish National Party

I was in the 2008 debate with Lord Foulkes. Can you please clear up for me the difference between deemed consent and presumed consent?

Photo of David Stewart David Stewart Labour

I will go on to cover that, if the member can be patient.

When the Human Transplantation (Wales) Act 2013 comes into force, three choices will be available in Wales—I hope that this will help with the member’s point. First, people can continue to opt in, with their names being placed on the register. Secondly, they can opt out and have that decision recorded in the existing UK-wide register, which will be revised to take account of the legislative change. Thirdly, they can choose to do nothing, in which case consent to organ donation will be deemed—that choice is known as a soft opt-out.

We were told that the process for opting out would be very straightforward, with people being able to opt out at general practitioner surgeries, online or by phone. During the two years between passing the act and it coming into force, the Welsh Government and the health authorities have been engaging in a process of awareness-raising and education to ensure that people in Wales are aware of the changes to the law and the new choices that they will have.

Photo of David Stewart David Stewart Labour

I am very short of time—I apologise to the member but I am keen to get this on the record.

We were told that the act has been a popular success in Wales and has gained substantial and growing public support. Information campaigns have been targeted at groups of people for whom it was judged that more needed to done to ensure that they were informed. For example, additional steps were taken to improve levels of understanding among faith groups, especially given that faith groups had made it clear that they were in favour of increasing rates of organ donation.

Young people are another group at which campaigns have been targeted—particularly 16 and 17-year-olds. People will not be capable of having their consent deemed until the age of 18, but as young people approach that age, it is important for them to be aware of their options and the choices that are available.

The use of real-life case studies in Wales has been extremely powerful in swaying public opinion and we were told that a good bank of case studies has been established.

The Welsh minister told us that 45 more organs are expected to become available as a result of the legislation, or 15 new donors a year—on average, three organs come from each donor. A feature of the Welsh legislation—and another aspect that the minister was keen to stress—is the continuing involvement of the family at the point of donation.

In any situation of deemed consent, in which a person has not indicated their wishes either way on the register, the family will always be asked whether they have any better information about the potential donor’s views and wishes. The minister stressed that the family members are not being asked for their own views. Rather, they are being asked to indicate what they know of the potential donor’s views. We must not underestimate how difficult it must be for families to find themselves having to deal with the death of a loved one and at the same time being asked about organ donation. It is understandable that some families, when faced with such a situation, might feel unable to take such a decision. There might be a variety of reasons but we know from research that sometimes families feel unable to agree to organ donation. On occasion, they can override the wishes of the deceased.

Being able to guarantee that the donor’s instructions are carried out and are not overridden by the family was discussed at length in Wales during the passage of the legislation. The Welsh minister told us that they had decided on two safeguards. The first safeguard is that people will still be able to opt in or opt out. A person who is a strong supporter of organ donation or, on the other side, a person who has strong views that they do not wish to donate, can record their wishes on the register.

Further, a person who is anxious that their views might be contested by a family member who has a different view will be able to appoint a representative who will exercise consent on their behalf to the clinical team. Where a representative has been appointed, that person will take priority over the family. The thinking behind that is that if an individual has taken the trouble to appoint a representative, that person’s view will be the one that prevails. If someone has no family and has appointed a representative, the donation will go ahead; if somebody dies and no family or representative can be found, donation will not be progressed.

All that said, no Parliament can legislate for every contingency. The minister told us that that was one of the conclusions that was reached as their act made its way through the Welsh Assembly.

We know that there are costs involved with the introduction of this new system in Wales. We were advised that £7.5 million had been set aside to support a range of activities around the change in the law. However, the minister advised that all the evidence available suggested that if Wales was able to secure just two more donations, the system would pay for itself, given the cost of kidney dialysis. If two people could be taken off dialysis, the cost savings would cover the cost of the law change. It seems almost incredible that such a small change in the number of donations can cover the cost of the legislation and that point certainly grabbed the committee’s attention.

I welcome the opportunity to debate the issues raised in the petition and I look forward to hearing the views of my colleagues in the chamber.

I move,

That the Parliament notes Petition PE1453 by Caroline Wilson on behalf of the Evening Times and Kidney Research UK (Scotland), which calls for an opt-out system of organ donation in Scotland; congratulates the petitioner on her efforts to raise awareness of organ donation, and commends the issues raised in the petition and the evidence received by the committee to the Scottish Government for further consideration.

Photo of Michael Matheson Michael Matheson Scottish National Party

I welcome the debate, as any interest in organ donation is a good thing. I am also very grateful for the committee’s work on the issue.

The Scottish Government remains committed to increasing organ donation. No other country in the United Kingdom can say that it has done more on this agenda over the last five years than we can, but we remain unconvinced that we should make any move to introduce an opt-out system. I will ensure that we keep the issue under review and learn from what happens in Wales, but we are making great progress in Scotland with the programme of activity that we have under way.

People believe that opt out would mean that more organs will become available, but our experts tell us that that would not necessarily be the case. Opt out means increasing the proportion of the population on the organ donor register, but one does not need to be on the register to be a donor. Over the last five years, 62 per cent of all donors in Scotland were not on the register.

Photo of Michael Matheson Michael Matheson Scottish National Party

I will just finish my point before doing so.

The number of donors is limited by the number of people who die in circumstances in which donation is possible. Unfortunately, to become an organ donor, one must die in intensive care and only about 1 per cent of deaths in Scotland occur in those circumstances. Sadly, that is not something that opt out can change.

Photo of David Stewart David Stewart Labour

The petition says:

“When Belgium switched to an opt-out system of organ donation in 1986, there was an 86% rise in the number of kidneys retrieved for life-saving transplants.”

Will the minister comment on that?

Photo of Michael Matheson Michael Matheson Scottish National Party

That is very welcome, but I will move on to the issue of international comparison, because one must take the figures with a significant level of caution.

As the member has just done, the argument is often made that countries with opt-out systems have higher donation rates than Scotland and that is indeed the case for some countries. Spain is often cited, but its opt out was in place for 10 years before its donation rates started to increase. Furthermore, there are areas where Scotland does better than Spain. For example, we have a much higher rate of living organ donation than Spain. As I say, we must be cautious when making such international comparisons.

There are many differences in how organ donation works, and not just the opt-out system. Countries such as the United States of America do not have opt out, yet have higher donation rates than Scotland, while countries such as Sweden, which has an opt-out system, has lower donation rates than we do. No single thing will bring about a revolution in donation rates; we need to look at the whole system in order to increase donation rates.

As I said, Scotland is doing very well. In the past six years, we have almost doubled the number of donors in Scotland. We have delivered a 62 per cent increase in the number of transplants that are carried out, which is the highest number in any part of the UK, and there has been a 25 per cent reduction in the transplant waiting list since 2006-07.

I reassure members that, just because we are not yet convinced by opt out, that does not mean that we are doing nothing. We are delivering a significant work programme. Last year, we published a seven-year plan containing 21 separate actions that we will progress. I encourage members to read the document in full, so that they see the many things that we are working on. The key point is that the plan was written in partnership with the Scottish donation and transplant community—the people working with donors and delivering transplants day in, day out. The priorities set out in our plan are what they told us that we need to do in order to increase donation rates even further. The success that we have seen over the past five years is down to those very people. Given that we have achieved the success that we have on the basis of the advice that we have been given by the donor and transplant community in Scotland, it is important that we listen to their advice in going forward.

We are making the best progress in the UK, working with our donation and transplant community. We are seeing more donors and delivering more transplants, and we are saving more lives as a result. I welcome members’ interest in the issue and I offer my reassurance that we will continue to look at and review how the opt-out process progresses in Wales, but while we are making the sort of progress that we have been delivering in recent years, I believe that it is prudent and appropriate to wait to see what happens in Wales before we start to introduce significant legislative change here in Scotland.

Although we are not convinced about opt-out at present, I want to reassure members about the range of actions that we have been taking forward over the past five years. I hope that members are reassured by the significant improvements in the donor and transplant system that we have achieved here in Scotland—they are better than those in any other part of the UK.

Photo of Rhoda Grant Rhoda Grant Labour

This is an extremely important debate and I am grateful to the Public Petitions Committee for bringing it to the chamber. I am also grateful to the petitioners, the Evening Times and Kidney Research UK for bringing their petition on a soft opt-out organ donation system to the Parliament.

As we heard, about 600 people in Scotland are waiting for an organ transplant. Sadly, some of them will die before being offered a transplant, yet we could come closer to meeting that need if everyone who could donate did so. Donating is like giving somebody the gift of life. However, in Scotland, we ask families to make the decision at the most harrowing time of their lives. Corneas can be donated as late as 24 hours after death, but the other organs need a body to be kept on life support to allow donation to happen, and decisions therefore need to be made very quickly. The petition calls for a soft opt-out system similar to that which has been adopted in Wales.

The Welsh system presumes consent but allows people to opt out. They can also confirm their wish to opt in. If no preference is registered, the assumption is that they wish to donate. At the time of death, the family is asked whether they know whether the person wished to opt out. They are not asked to make a choice but simply to confirm, if they can, their loved one’s wishes. If they do not know their loved one’s wishes, donation is presumed. If donation appears to add to the family’s distress, it is up to the trained staff in the donation unit to decide whether to take the donation. However, if a potential donor knows that their family’s wishes will be not to donate, they can nominate a representative to make their views clear, and that representative can overrule the family’s wishes.

That system has the ability to increase donation. Some 90 per cent of people agree with donation, yet only 41 per cent of Scots have registered on the organ donation register. We know that, when the next of kin are asked, 43 per cent refuse donation if they do not know their loved one’s wishes, and that is even if they are informed that their loved one was indeed on the organ donation register. If they have had a prior discussion, only just over 11 per cent refuse donation.

I am concerned that people are often asked to make this decision at times of great distress, when it is almost impossible for them to think straight. I wonder how many come to regret the decision to refuse donation when they have time to reflect and perhaps reconsider. Given that only 10 per cent object to donation, it is surely best to ask those people to register that objection. In that way, every potential donor can have their wishes prevail. Our system puts the onus on the next of kin; a soft opt-out system puts the onus on the donor.

Previously, the Scottish Government indicated support for a soft opt-out system, but today it appears to be pulling back from that. That is really disappointing. I urge it to reconsider, because if it waits for an evaluation of the changes in Wales, we will be well into the next decade before we see changes happening in Scotland, and that will be too late for pretty much everyone who is already waiting for a donation. We need to make a step change now, and I urge the minister to reconsider.

Whichever system of donor registration we have in place, we must underline the need for people to discuss their wishes with their family so that they know what their wishes are. I have made my wishes clear to my family and I urge everyone else to do the same.

However, we cannot just depend on registration. We must take other steps to increase donation, and there is a lot more that we can and should do. Donation and registration are markedly lower among black and ethnic minority groups, while the need for donation is higher. There are also issues to do with religious belief. In Jewish and Muslim communities there is a requirement for quick burial but, with some thought and planning, it is possible to allow for that and to facilitate donations. More work needs to be done with those communities to ensure that we have a sufficient number of donors to meet needs.

There is also the issue of suboptimal organs. Because of the shortage of organs that are available, clinicians have to consider the use of suboptimal organs, which are organs from older people or people who have died from illness rather than as a result of an accident. When I was first told about the practice, I expressed surprise, but I was told that, when a person’s organs are not working at all, frankly, any old replacement organ will do. Suboptimal organs can buy the recipients time and it is important that we pursue the issue of how they should be used.

The donation process requires access to life support to keep organs functioning while preparations are made for harvesting. There is also a requirement for theatre facilities to allow retrieval to take place. Retrieval teams can take the donor back to specialist centres to harvest their organs, but that can be distressing for the family, especially in cultures in which a loved one’s body is normally kept close until burial.

Such issues are especially important in rural areas, where many potential donors are not given the opportunity to donate. We need to review facilities so that we can put together local action plans for donation that identify pathways that can be used. That would require an audit of facilities and skills, as well as consideration of how we facilitate retrieval teams coming into such areas.

Many other options are available, but I am conscious that time is running out. I urge the Scottish Government to draft the legislation that we need to introduce a soft opt-out. Wales has put that in place, along with the systems that are required. We could act now, and we should.

Photo of Jackson Carlaw Jackson Carlaw Conservative

I congratulate the petitioners whose petition led to the debate that we are having, which is a significant one, in that it is the first time since I entered the Parliament that there will be a vote at the end of a discussion on the subject of organ donation, as the previous debates on the issue in which I have participated have been members’ business debates.

Somewhat to my surprise, I found that I agreed with every word that the minister said. For Conservatives, this has always been a vote of conscience. I do not know whether that is the position of other parties, but we have said that, when it comes to any legislative change, individual members will be able to come to their own view. However, all Conservative members will support the motion at decision time, because we are of the view that, although some people remain to be persuaded—I am not someone who has any issue with the principle that we are discussing—a fully worked through legislative solution is to be implemented in Wales from December 2015, but we do not yet know whether that fully worked through legislative solution will prove to be wholly robust or wholly effective. It seems to me that the minister’s assessment is correct that the best course of action is to remain sympathetic to what is being done in Wales, to wait and see and watch carefully what happens there, and to use the Welsh system, if it is successful, as a template for legislation in the Scottish Parliament.

One aspect of what we have heard so far that I slightly regret is the hint that a politicisation of organ donation could suddenly emerge in the Parliament. One of the things that the Welsh minister said in the evidence that he gave to the Public Petitions Committee was that the broadest possible coalition of political support was fundamental to the success of any legislation.

Photo of Christine Grahame Christine Grahame Scottish National Party

I have not spoken to my whips, but that does not matter. Does the member agree that this is one of the issues on which we hope that the parties will have a free vote?

Photo of Jackson Carlaw Jackson Carlaw Conservative

Personally, I agree, but it is not for me to dictate the approach beyond the position that the Conservatives will take.

If I have not had a concern about the principle, I have had a concern about robustness. As the minister pointed out, Scotland has the highest level of voluntary donor registration of any nation in the UK. Of the people who become donors, 62 per cent are not on the register. That has been achieved because of a broad appreciation in Scottish public opinion of the desirability of people offering organs on death and the need for that. However, some make a distinction between the voluntary nature of such donation or its being achieved on a voluntary basis in concert with the remaining family, and the presumption that the state owns somebody’s body at the point of death, which is a completely different proposition.

My concern about robustness goes slightly further. The voluntary support in Scotland for organ donation has been hard won. I am afraid that there is a history of failure in the NHS—particularly in systems—to ensure that there is public confidence that an individual’s wishes will be observed.

Drew Smith (Glasgow) (Lab) rose—

I will finish this point. Nothing would be more detrimental to voluntary organ donation in Scotland than moving to a system under which it was demonstrated thereafter that an individual’s wishes were not respected either way. I am afraid that we live in an environment in which we know that the media would make the most possible hay of such an event, which could have a fundamentally detrimental effect on public opinion.

Photo of Jackson Carlaw Jackson Carlaw Conservative

I will give way to Drew Smith, who sought to intervene first, and then to Rhoda Grant.

Photo of Drew Smith Drew Smith Labour

Does Jackson Carlaw accept that people’s wishes are not being respected under the system at the moment? If, when somebody dies, they are able—I do not know whether to say fortunately or unfortunately—to make a donation, there is no guarantee that their decision to carry a card will be respected.

Photo of Jackson Carlaw Jackson Carlaw Conservative

That is why I am sympathetic to the system that is being progressed in Wales. However, there is a distinction between that and a legislative change under which an individual’s wishes are not respected. To be frank, the non-observance of wishes could have a far more detrimental effect on public opinion. If it were proven that somebody’s organs were used when they had asked for them not to be used, that could prejudice public opinion significantly.

Photo of Rhoda Grant Rhoda Grant Labour

Drew Smith made a point that I was going to make. I make it clear that there is an opt-out and a register on which people can make their wishes known. The fallback system for people is to tell their family that they do not want to be a donor. The soft opt-out system takes a belt-and-braces approach.

Photo of Jackson Carlaw Jackson Carlaw Conservative

I accept both the points that have been made, which is why I would like the system that has been constructed for Wales—we took considerable and persuasive evidence on it from Mark Drakeford—to be tested, so that I am assured that the points that Rhoda Grant makes have been substantiated in practice. If that were the case, there would be scope in the next parliamentary session for the Government, having considered the practice in Wales, to consider whether to introduce a legislative solution. At this stage, we remain unpersuaded but sympathetic.

Photo of Angus MacDonald Angus MacDonald Scottish National Party

I extend my thanks to Caroline Wilson, who brought the petition to the Public Petitions Committee on behalf of the Evening Times and Kidney Research UK (Scotland). As we heard from the convener, the petition calls on the Scottish Parliament to urge the Scottish Government to introduce an opt-out system of organ donation to help to save more lives. Saving lives is the crux of the matter. Organ donation saves lives, so increasing the rate of donation will allow us to save more lives.

NHS Blood and Transplant reports that, as of 8 April, 595 patients in Scotland were waiting for a transplant. Last year, unfortunately, 34 people died in Scotland while waiting for a transplant. More are taken off the waiting list as they become too ill to receive an organ.

A conservative estimate from the British Medical Association is that around 70 per cent of people are willing to donate their organs after death, but only 40 per cent of the population in Scotland are registered as organ donors. I am both proud and ashamed of that figure. I am proud because, for the past five years, as the minister said, the number of transplants has gone up and the waiting list has got smaller. The proportion of registered donors in Scotland is now about 8 percentage points higher than in the UK as a whole.

Those improvements are a result of the efforts of the Scottish Government and the regional health boards in implementing the recommendations in the organ donation task force’s 2008 report. However, I am concerned that lives are still being lost unnecessarily because people who are willing to donate organs after their death simply never get round to making their views known. That results in relatives making a decision without knowing that the deceased was willing to donate. For that reason, I believe that it is essential that we consider ways in which the organ donation system can be improved further to reduce the number of avoidable deaths.

Since 2008 and the implementation of the organ donation task force’s recommendations, significant improvements in the infrastructure have been made and donor rates have increased. Now that that has reached fruition and the new systems and arrangements have become settled, we need to decide as a society and as a Parliament what the next steps should be. We have a well-organised, well-funded and comprehensive infrastructure in place to facilitate organ donation, but there is clearly still a great deal of scope for improvement.

The organ donation task force commissioned the University of York to undertake a systematic review of all relevant published data on an opt-out system of organ donation. In the countries that were looked at, the review found that opt-out law or practice was associated with an increase of 21 to 30 per cent in the rate of donation following the introduction of an opt-out system. However, it would be misleading of me not to inform Parliament that the study found that a number of other factors appear to be associated with improved organ donation rates, such as transplant capacity, health expenditure per capita and public awareness. I believe, though, that those areas have already been improved on. Indeed, the 2013 publication “Taking Organ Transplantation to 2020” follows up on the previous organ donation task force 2008 report and shifts focus to donor apathy. The new strategy builds on the achievement of an increase in donor registration and focuses on reducing the high family refusal rate, which at 43 per cent is one of the highest in the western world.

If Scotland was to move to an opt-out system of organ donation, we would not be starting from scratch. As well as having examples to draw on from the well-established opt-out systems in Spain, Austria, Portugal and Belgium, some of which have been referred to, the Scottish Government can follow the precedent that has been set by the National Assembly for Wales. The Welsh legislation, which received royal assent on 10 September last year, introduces a soft opt-out system. The Public Petitions Committee was pleased to take evidence from Mark Drakeford AM, the Minister for Health and Social Services, during a useful videolink session. I had hoped to cover the points that were raised during that session, but my time is limited.

I welcome Michael Matheson’s assurance that he will follow progress in Wales with interest, although I believe that it will be at least two years before we can judge whether it has been successful. I take on board the minister’s view that the Scottish Government is not yet convinced of the benefits, but I believe that it is clear that an opt-out system is an effective mechanism to increase availability of organs for transplant and ultimately save the lives of people with end-stage organ failure who have no other treatment options available to them.

An opt-out system of organ donation should be considered as part of the Scottish Government’s broader strategy to improve donation rates. Under the system, individuals would have exactly the same choice as in an opt-in system—to donate or not to donate. I therefore look forward to the issue being debated further in Parliament, with a view to progress being made on the issue, which I hope will be at some time in the not-too-distant future.

Photo of Drew Smith Drew Smith Labour

I am grateful for the opportunity to speak in the debate. I thank David Stewart and his colleagues on the Public Petitions Committee and their clerks for providing Parliament with a welcome opportunity to consider the issues again, as Jackson Carlaw said.

I have previously said that I fully support a move to a soft opt-out organ donor register, and I support legislation on that being introduced as soon as possible. I have put that view to the Parliament previously and I made it known to the Public Petitions Committee during its consideration of the Evening Times petition, which was supported by more than 10,000 Evening Times readers. I have had the privilege of having a degree of involvement in the campaign that the Evening Times has run. I thank Anne McTaggart for taking up the issue and I look forward to her speech.

Under the current system, there is no guarantee that our judgment in life will be respected in death. Ninety per cent of Scots support organ donation, but fewer than half of us carry a donor card, as Rhoda Grant said. The minister was right to say that only a tiny percentage of us will die in circumstances in which organ donation might be possible, but the ultimate decision is taken by family members, in the most difficult circumstances, and there is no requirement whatever to respect the views of the potential donor.

A change from an opt-in register to an opt-out register would help to support families who are unsure about what to do. I know families who have said no but gone on to regret the choice that they made for their loved one. A change to an opt-out system would give people who want to donate a greater degree of confidence that their wishes will be respected.

Notwithstanding what the minister said about the evidence, that position is held by the British Heart Foundation, Kidney Research UK and the British Medical Association. It was the view of the Cabinet Secretary for Health and Wellbeing, when he was in opposition, that an opt-out system could lead to a rise in donations. That is the crux of the issue: a simple change would save lives. The approach is supported by almost half the MSPs in the Parliament, across the parties, who have given public backing to the Evening Times campaign—and that is before we have had any detailed debate that might allay people’s initial concerns.

I came to my view over time, as other members, particularly my friend Richard Simpson, helped to bust the myths around so-called presumed consent. Whether we have an opt-in register or an opt-out register, the fundamental choice remains the same: it is a choice for individuals. The choice to give remains something to celebrate rather than take for granted. I see nothing in a change to an opt-out register that would diminish that. Hundreds of people are on organ waiting lists. We have the opportunity, not to remove the choice but to make the choice as easy as possible.

The Parliament is capable of being bold from time to time. My party’s front bench has committed its support, but this does not need to be a political issue if the Government is prepared to bring forward a consultation or allow time for a member’s bill on the matter. A free vote can go either way, and I hope that the Government would be open to its back benchers supporting a bill, given that the breadth of support for an opt-out system is a matter of public record.

I acknowledge that people would need reassurance and that we would need complex safeguards. We would need new procedures, and a significant public information campaign would be essential before we could use a new register.

When I spoke in the debate on this issue in November 2012, I said that if we agreed to go ahead with an opt-out register, change would still be years off and, in the meantime, more people would die. That is the reality. People have died while the petition has been being considered. I absolutely recognise the progress that has been made but, unless there is a clear timetable for reform, more families will lose a loved one after months of waiting and dashed hopes, knowing that a donor who could and would help might be out there somewhere, but knowing, too, that the current system makes it harder for a match to happen.

The Welsh Government has gone ahead with the approach. I asked the Public Petitions Committee to take evidence from the Welsh Government because I thought that the Welsh experience of winning the public debate would be of great value in assisting Scotland in doing the same. I see no need to await a review of the legislation in Wales before we act. Before this debate, I thought that the Government no longer objected in principle and that it was just the timing that would cause delays, so I am disappointed by the minister’s comments this afternoon, which I think represent a departure from what we have heard in the past from Alex Neil and Nicola Sturgeon.

Photo of Bob Doris Bob Doris Scottish National Party

I said in the past that I was undecided on whether there should be an opt-out system of organ donation in Scotland. I expected the matter to come before the Health and Sport Committee, of which I am deputy convener, so I knew that I would have to scrutinise any proposed legislation on the matter, and I thought that being undecided would be a distinct advantage in that regard.

In recent weeks, I have come to the growing realisation that that might just have been a way of avoiding coming to a personal position on opting out and then advocating that in the Scottish Parliament. In the meantime, I have looked on in admiration at Caroline Wilson’s petition on behalf of the Evening Times and Kidney Research UK on an opt-out system.

I also had an unnerving feeling that I might not have been doing all that I can to help the constituents who I represent. What really impacted on me was a meeting that I had with the Cystic Fibrosis Trust, which supports an opt-out system for organ donation. However, that was not my reason for meeting the trust. The meeting was about the organisation’s calls for changes to the lung allocation scheme for transplants. It is seeking a new national system as opposed to a regional system of lung allocation for transplants. Indeed, I have corresponded with various public bodies on that matter, and there is clinical evidence on both sides of the debate. I understand that the evidence is being reviewed, which is important, because there is strong evidence on both sides and there is no clear way forward. As MSPs, we have to balance what is best for our constituents.

The Cystic Fibrosis Trust raised some other matters that relate to organ donation as part of a wider campaign. In particular, the trust talked about the invidious choices that those who are living with cystic fibrosis have to make when they are desperately waiting for a transplant. For accuracy, I will quote directly from the briefing. It uses the terminology “extended criteria lungs”. What are extended criteria lungs? They are

“lungs which fall outside the traditional donor criteria set by the International Society for Heart and Lung Transplantation. They may come from a donor who is over 55, smoked, or has some mild lung abrasions.”

I should point out that those lungs are tested and cleaned before they are used.

However, the science is not perfect. There are a small number of recipients of lungs from former smokers who have gone on to develop lung cancer and died relatively shortly afterwards. What a tragedy. Imagine a CF sufferer having to choose between no organ or such lungs. I could not imagine what I would choose if I was in that situation. Would I wait for the perfect lungs to become available or would I take a punt on what have been described as suboptimal organs. That was the story that Yvonne Hughes of the Cystic Fibrosis Trust brought home to me as the reality for many who are waiting for organs.

Where does that leave me in relation to the opt-out system? Do I still have concerns about it? Yes, I absolutely do, and the contradictions in my head only get greater as the debate goes on. To quote again some of the figures, 93 per cent of people in Scotland say that they want their organs to be used but 43 per cent of families refuse, and 62 per cent of organs that are used come from people who did not carry an organ donor card. In the past five or six years, without an opt-out system, we have doubled the amount of organs that have been made available for transplants.

No one in the chamber should say that this issue is easy, simple or straightforward. It is most definitely not a partly-political issue with me. In her intervention, Christine Grahame said that she had not spoken to whips about this, but why would she? We say what we like about this matter in Parliament and that is what I am doing. There is no need to speak to anyone. We just need to look at the facts and the evidence ourselves.

Today’s debate has enabled me to look seriously at the issue. Should I come to a position now on an opt-out system? I am not quite there yet, but I would have to find some strongly compelling reasons not to have an opt-out system in the years ahead, and hopefully in the not too distant future. It is very important that the Parliament proceeds on the basis of consensus.

I have not yet decided, and I have a number of concerns that I do not have time to put on the record this afternoon. I am left with the lasting impression that it is almost certainly the right thing to do, whether it makes a difference or not, because if one life can be saved, surely it is worth moving to an opt-out system to do that.

Photo of John Scott John Scott Conservative

Given the slightly changed and, indeed, changing circumstances, I can now allow speeches of between five and six minutes. I call Mary Scanlon, to be followed by Christine Grahame.

Photo of Mary Scanlon Mary Scanlon Conservative

I am very pleased to speak in the debate in the absence of my colleague Dr Nanette Milne.

In the debate secured by George Foulkes in January 2008, I stated:

“I do not support the concept of presumed consent. It is a contradiction in terms. Presumed consent is not consent. Consenting means agreeing or giving assent. Consent ... can only be given freely by an individual.”

I said that I felt strongly that donating organs is willingly giving, not willingly taking, and that

“Organ donation is a matter of individual conscience and individual freedom—it is not a matter for the state.”—[Official Report, 24 January 2008; c 5548-9.]

In that debate, I also quoted a consultant at Addenbrooke’s hospital, who stated:

“If as a doctor you have turned your thoughts to your patient being a donor when they are still living, that is a real conflict.”—[Official Report, 24 January 2008; c 5549.]

That debate was six years ago, and I still hold those views, although I carefully read the evidence to the Public Petitions Committee from Mark Drakeford, Minister for Health and Social Services in the Welsh Government. I commend the members of the Public Petitions Committee; I also commend members across the political divide in the Welsh Assembly for the excellent consultation that they carried out and the excellent work that they have done in moving to a soft opt-out system for organ donation. Like others, I am not saying that I will vote for a soft opt-out system if we are presented with the opportunity, but I certainly find many aspects of the soft opt-out system much more acceptable than the previous proposal for presumed consent.

I put on record that I have no problem agreeing with the motion that is before us today. I like the idea that people can continue to opt in by putting their name on the organ donor register but that they can also opt out or, indeed, choose to do nothing. As others have said, it is commendable that we in Scotland have the highest percentage of the population registered on the organ donor register—currently, it is 10 per cent above the UK average.

We should commend the 50 per cent increase between 2007-08—which coincides with our previous debate in Parliament on the issue—and 2012-13 in the number of people whose organs were donated after their death and the significant increase in transplants. However, there is no doubt that more needs to be done, given the UK transplant waiting list of more than 7,000. It is also a concern that 43 per cent of families refuse to allow donation to go ahead, sometimes even overturning the recorded wishes of their loved ones. For all those reasons, although I am not signed up to the soft opt-out system, I think that it is worthy of consideration.

There are further issues to be worked through in the evidence to the Public Petitions Committee. One that really struck me, which was raised in the questions from Chic Brodie and Jackson Carlaw, was the changing structure of many families. If someone has not opted out, there might not have been any discussion within the family about their commitment to donate organs. Members of the family could also disagree about their understanding of the person’s wishes. I appreciate that a person can be appointed to represent the views of the individual, which is very helpful, but many people might not exercise that option. I have to admit that the issue is not one that I have ever discussed within my family.

At the Public Petitions Committee, Jackson Carlaw rightly asked who would arbitrate at the point of donation in the event of a person doing nothing. Who makes the ultimate decision for the transplant to proceed? He sought confirmation that the family’s view would prevail. The primacy of the appointed representative is very helpful, but there is no doubt that considerable awareness raising and publicity would be needed prior to a move to any new system that is under consideration.

I found the BMA briefing helpful. I do not agree totally with it, but I acknowledge the point that

“Statutory guidance surrounding new legislation must provide clear guidance to professionals on how to deal with relatives’ refusals.”

Dealing with relatives in that situation must be very difficult, even if the assessment of what would be likely to “cause ‘distress’” to bereaved relatives

“would ... be carried out on an individual basis by trained professionals”.

The soft opt-out system sounds good, but it is not without some unintended consequences and challenges.

To sum up, I find presumed consent wholly unacceptable. The soft opt-out system addresses some of the concerns relating to presumed consent, and I would certainly welcome input from a named representative and from families.

Photo of Elaine Smith Elaine Smith Labour

I am afraid that the member must close now.

Photo of Mary Scanlon Mary Scanlon Conservative

I am delighted that much progress has been made. Like Jackson Carlaw, I am keen to follow the outcomes of the soft opt-out system, and I acknowledge my party’s free vote on the issue.

Photo of Christine Grahame Christine Grahame Scottish National Party

To respond to my colleague Bob Doris, the point that I was trying to make when I intervened on Jackson Carlaw is that it was inevitable that there would—as indeed there must—be a free vote among all the parties in the Parliament.

I congratulate the petitioner on raising the issue, which I have spoken on in previous debates. I fully support obtaining an increase in organ donation through the opt-in system. I have opted in myself—it is easy to do so simply by going online and clicking a button to put yourself on the opt-in register. I also support an opt-out register, which I will come to later.

I want to tackle some of the definitions that have been used in the debate. We are talking about donation. If someone is donating something, it is willingly given: a blood donor willingly gives blood. If there is silence—I will come to whether that equates to deemed or presumed consent—there cannot be donation. There cannot be refusal or willingness to donate—we do not know—but there is certainly not donation.

I intervened on David Stewart to challenge him on the difference between “deemed consent” and “presumed consent”. It is sophistry to say that there is a difference between the two terms. Deemed or presumed consent is a contradiction in terms, because consent must be clearly and freely given and must be informed, and the individual must have the capacity to decide. Silence cannot contain any of those elements whatsoever, and mistakes could be made, as has been mentioned.

I have a problem with the terms “donation” and “deemed consent”, but I do not have a problem with having two registers. However, the registers should not place mandatory requirements on any family members—they should be persuasive regarding the wishes of the person when they had the capacity to decide and gave or withheld consent, depending on which register they are on. Registration would express their views clearly.

I will pray in aid a quotation that I used in 2008.

Photo of Christine Grahame Christine Grahame Scottish National Party

I will continue, if I may. I will let the member in if I have a little bit of time.

The quotation is important, as it comes from a senior consultant surgeon at the Western infirmary who was present when trauma patients came in and brain-stem death was imminent. He said:

“It is ... unthinkable that a dead patient’s organs would be taken without family agreement, and hence discussion with the deceased’s family after brain-stem death will need to continue as before”, whether or not we have the two registers. He went on to say:

“It is vital that this discussion is informed by accurate knowledge of the patient’s wishes expressed before death. This can only be guaranteed by ... registration of patients’ wishes, whether for or against donation.”

Photo of Christine Grahame Christine Grahame Scottish National Party

In fairness to Rhoda, I will just finish my point.

The surgeon went on to say:

“Anything less than this form of balanced registration would be invalid as an indicator of the deceased’s wishes, and could not reasonably be used to inform the discussion with the deceased’s family which will ... need to take place, even with a change in the law to presumed consent.”

My problem is not with the two registers but with that bit in the middle: the deemed or presumed consent. We have to tread very carefully with that. It is right to have both an opt-out register and an opt-in register: that makes the surgeon’s job so much easier when they discuss the issue with the family, even as they do now. However, with deemed or presumed consent, a surgeon might have to say to a parent that, although their dead or dying son or daughter is not on either the opt-in register or the opt-out register, the law tells the surgeon that they can deem consent. I think that that makes the surgeon’s job, and the conversation, tougher. The matter should be left to the discretion that surgeons exercise just now.

Clearly, having two registers gives a better chance of persuading the family and of their having some guidance, which is much needed in the circumstances.

The Deputy Presiding Officer:

You are in your final minute.

The Deputy Presiding Officer:

You have to finish after five and a half minutes.

The Deputy Presiding Officer:

Please use full names.

Photo of Rhoda Grant Rhoda Grant Labour

Thank you for allowing the intervention, Presiding Officer.

The current system allows families to make a decision on behalf of a person although they might have no knowledge of whether the person consents to donation. A soft opt-out system would allow people to register either their consent or their wish not to donate, and would remove the onus from families. Is Christine Grahame saying that the donations that are made when people are not on the register—the figure is 63 per cent—should not be made?

The Deputy Presiding Officer:

You must draw to a close, Ms Grahame.

Photo of Christine Grahame Christine Grahame Scottish National Party

I am saying that if we change the law such that silence becomes deemed or presumed consent, we make the situation more difficult for the surgeon who has to inform the dying person’s parents that that is the position in law. Having two registers is a good idea, but having a presumption about silence is not.

The Deputy Presiding Officer:

Thank you very much. I now call Jim Hume, to be followed by Anne McTaggart. Speeches should be a maximum five and a half minutes, please.

Photo of Jim Hume Jim Hume Liberal Democrat

This is a debate of the utmost importance because it concerns, literally, matters of life and death. It is appropriate that we are debating the issue today, as a national conversation on organ donation has not been held since the debate on the Human Tissue (Scotland) Act 2006. I believe that Scotland needs to have an open and robust debate on the tricky issue of death, because as a society we too often postpone dealing with the difficult topics of palliative care and, as in this case, organ donation until it is too late.

I would like to begin by praising the work of the Public Petitions Committee in considering Caroline Wilson’s petition, and for taking evidence from key stakeholders. Praise should also, of course, be given to Caroline and the rest of the Evening Times team for leading an effective campaign and garnering more than 18,000 signatures in support of the petition, thereby ensuring that organ donation continues to occupy our thoughts.

In its evidence submission to the Public Petitions Committee, the BMA said:

“A culture in which donation is discussed more openly and perceived as the norm would fit better with what most people claim to support.”

The key question is this: how do we arrive at the point at which donation is the norm? Currently, there are 7,500 people waiting for organ transplants in the UK, about 600 of whom are in Scotland. Three people on the transplant list die each day while waiting for an organ. However, the reality is that many people whose lives would benefit from, and be enhanced by, a new organ will die each year before making it on to the waiting list, so the demand for organs in Scotland is greater than what the statistics tell us.

We should acknowledge that progress has been made by the Scottish Government. The organ donation task force report of six years ago has helped to oversee a 74 per cent increase in donations, with 40 per cent of Scots now on the organ donor register. I believe that transitioning towards a soft opt-out system will help to close the gap between the 40 per cent of Scots who are registered as donors and the 90 per cent of Scots who support organ donation. I believe that that system would be the means to include the lost 50 per cent of people who support organ donation but who, for various reasons, fail to become registered donors. Surveys have consistently shown that support for the soft opt-out system is in excess of 70 per cent of the population. Countries that operate that model have roughly 25 per cent higher donation rates than informed consent countries.

There are national health service boards that are reluctant to endorse the soft opt-out system. NHS Tayside is one, but it is not alone. It highlights its concern that

“any assumption or presumption of patient’s wishes would be detrimental to the doctor patient relationship. This could actually result in a reduction in levels of consent and authorisation.”

We all wish to avoid any measure that would lead to erosion of patients’ trust in doctors, but I doubt that that would be the case. BMA Scotland—the voice of Scotland’s doctors—is one of the most vocal advocates of the soft opt-out system and seems satisfied that it will not be a problem; therefore, so am I.

In preparation for the debate, I reviewed some of the evidence that has been received by the committee from stakeholders. The contribution from NHS Fife concerned me. In it, Dr Brian Montgomery explained that fear of failure in transplanting units throughout the UK is leading to too many healthy organs not being transplanted, with several instances in which such organs

“are subsequently transplanted successfully into European recipients.”

I wonder whether the minister would address Dr Montgomery’s point, investigate whether that is common in Scotland and, if it is, try to ensure that we are not failing to utilise healthy organs.

Similarly, we must tackle the practice of registered donors not having their organs utilised following relatives’ refusal to give consent. I understand that in NHS Greater Glasgow and Clyde, that represents as much as 15 per cent of donors. That relates to our society’s reluctance to have the difficult conversations that need to take place, so we must encourage people to have those conversations. I would like the Scottish Government to take the lead in ensuring that that happens.

The Government’s recent donation and transplantation plan recommended a full public consultation on approaches to increasing organ donation in Scotland. I welcome that. What I do not welcome is the failure of the plan’s talking points to mention soft opt-out as a potential measure; instead, it referred to paying for the funerals of donors or giving priority to people on waiting lists who are registered donors. Soft opt-out must be included in any consultation to allow the public to have their say.

With the proper safeguards and procedures in place, the vast majority of people would be satisfied with the soft opt-out model in Scotland. It is an effective means to drive up the number of donated organs that are available to help to save lives and prevent people from dying before they receive an organ or even a place on the waiting list. Soft opt-out has been demonstrated to work overseas. I am confident that it could work here, too.

Photo of Anne McTaggart Anne McTaggart Labour

As a member of the Public Petitions Committee, I, too, thank Kidney Research UK and Caroline Wilson of the Evening Times, who is in the gallery, for their tireless work in bringing this vitally important issue to the attention of the Scottish Parliament. As a result of the evidence that was presented to the committee by a wide range of individuals and organisations, I have become convinced that the introduction of a soft opt-out system of organ donation would be in the best interest of patients and would ultimately save lives.

We know that most people in Scotland support the opt-out system of organ donation, yet the majority of the population have not yet chosen to register as an organ donor. A survey that was undertaken in early 2012 by the Scottish Government demonstrated that only 5 per cent of the population oppose organ donation in principle, yet the United Kingdom continues to have one of the lowest organ donation rates in Europe.

Enabling and encouraging those who support the transplantation of their organs after death to sign up to the register is a key priority. However, that is no longer enough when it comes to saving precious lives. In order truly to tackle the crippling shortage of organs in Scotland, we must adopt the Welsh model of a soft opt-out system of organ donation, which will dramatically increase the number of organs that are available to terminally ill people while allowing those who do not wish to donate the opportunity to remove their name from the register.

Evidence that was presented to the committee by the Welsh Government highlighted some of the key reasons why the Welsh Assembly chose to pass the Human Transplantation (Wales) Act in 2013. That legislation will come into force in December 2015 and it is expected that the move to an opt-out system will result in donations from 15 more donors a year in Wales, each of whom will donate an average of three organs. As many as 45 lives could be saved every 12 months as a direct result of changing the way in which people can become donors.

Under an opt-out system individuals have exactly the same choice as in an opt-in system: to donate or not to donate. The proposal does not compromise the freedoms of an individual who objects to organ donation and wants to make known their views. In reality, the proposal would make it easier for those who object to becoming organ donors to make their wishes clear. In an opt-out system, those who do not wish to be organ donors have the opportunity to make a positive declaration that they are opposed to transplantation of their organs, and that decision cannot be overturned by medical professionals after death.

Photo of Christine Grahame Christine Grahame Scottish National Party

As Anne McTaggart is aware, I agree with an opt-in and an opt-out register, but what should be done with the silent people in the middle?

Photo of Anne McTaggart Anne McTaggart Labour

We do not propose to remove anybody’s rights. In the soft opt-out system there is the right to opt in or opt out. There is no silence. The family will still be consulted and there will be guidance and support throughout.

If we can achieve reform, it is my ambition that organ donation will become the default position which, with public support, will change cultural expectations. That will result in a more positive view of becoming an organ donor, which should be encouraged in order to increase the number of people in Scotland who owe their lives to the incredible gift of organ donation.

Following the evidence that has been presented to me by a wide range of organisations and individuals, I am delighted to announce my intention to introduce a member’s bill on this important subject. Building on the excellent work of my colleague Drew Smith MSP, I intend to launch a consultation in the coming weeks to gather responses from interested parties on reform of the organ donation system in Scotland.

I am hopeful that a member’s bill on this subject will provide Parliament with another opportunity to look at the compelling evidence in support of change, and to scrutinise the powerful submissions that have been made by medical professionals, third sector organisations and transplant patients in support of this important reform.

I welcome further debate on this important issue and I look forward to introducing my member’s bill over the next few weeks—I hope that it is weeks and not months—on the introduction of an opt-out system, and I aim to convince the minister and my colleagues in the chamber that an opt-out system is the way forward to changing lives in Scotland.

The Deputy Presiding Officer:

Many thanks. I am afraid that we have to return to just over five minutes each for the next two speeches.

Photo of John Wilson John Wilson Scottish National Party

I rise to speak in this debate as a member of the Public Petitions Committee. I will remind members what the motion before us says, because there seems to be a debate about opt in, opt out, soft options and all the rest of it. The motion actually says:

“That the Parliament notes Petition PE1453 by Caroline Wilson on behalf of the Evening Times and Kidney Research UK (Scotland), which calls for an opt-out system of organ donation in Scotland; congratulates the petitioner on her efforts to raise awareness of organ donation, and commends the issues raised in the petition and the evidence received by the committee to the Scottish Government for further consideration.”

It mentions an opt-out system and it asks the Scottish Government to consider the issues further. Based on the minister’s response today, quite clearly the Government is looking at the various options that are before us. The minister outlined some concerns regarding the Spanish and Welsh systems. In such debates, we must consider all the issues, especially what happens in other countries. After all, what we should be aiming for—indeed, what we be striving for is the best possible system to progress the issue.

This is a very emotive issue for many people. I am going completely off my speech now. I recall a constituent asking me at my surgery to sign off her consent form to allow her to donate her body to medical science. She had to sit down with her children and other family members when they were all together at Christmas to discuss the matter and to make clear her express wish. It has already been pointed out in the debate that many people find it difficult to talk to their parents, their children or other members of their family circle about what will happen to their organs when they die.

The difficulty is that when many people lose a loved one and are asked whether the person’s organs can be donated to help save someone else’s life they are not in the right frame of mind to make a clear thought-out decision or informed choice. When we lose a loved one, it is a very emotive time.

We have heard evidence about what happens in Wales and it is clear that, although relatives are consulted, it is the medical professionals who make the final decision on whether organs are used for transplant. The problem with that approach is that the trust between families and the medical professionals who are trying to do their job in hospitals and elsewhere could be lost. We have to be very careful—[Interruption.] Richard, if you want to intervene, go ahead.

The Deputy Presiding Officer:

Full names, please.

Photo of Richard Simpson Richard Simpson Labour

I have wrestled with this issue since my original report to the Health and Community Care Committee back in the first session of the Parliament. John Wilson is absolutely right to say that at the time of a death it is incredibly difficult for a person to make a positive decision about their deceased relative. However, changing the system to have a firm opt-out that allows people to register their right not to donate would make things much easier for the silent portion in the middle, to which Christine Grahame referred, because the situation changes from their having to make a positive decision to their being asked, “Do you know what the deceased’s wishes are and do you know of any reason why they might not want their organs to be donated?”

The Deputy Presiding Officer:

Mr Wilson, you must draw to a conclusion, because your time is up.

Photo of John Wilson John Wilson Scottish National Party

Not everyone has the capacity to opt out, and we have to think very carefully about what opt-out system we would put in place in order that we ensure that everyone has the opportunity to make a clear, distinct and informed choice.

The Deputy Presiding Officer:

I call Margaret McCulloch. Ms McCulloch, I am afraid that I can give you only five minutes.

Photo of Margaret McCulloch Margaret McCulloch Labour

It has been six years since the organ donation task force reported on ways to improve organ donation, and the progress that has been made in that time has quite rightly been welcomed across Parliament and the medical profession. The task force’s findings have shaped policy, have informed the work of the Government and the Scottish transplant group and have contributed to an increase in donation rates that has exceeded expectations. As we have heard, many of the task force’s recommendations continue to be reflected in the new strategy in “Taking Organ Transplantation to 2020”.

However, for all the progress that has been made in recent years, more than 600 patients in Scotland are still waiting for transplants. As too many families out there know from their own tragic experiences, the sad truth of the matter is that many of those people will die waiting. We have to ask ourselves—as a Parliament and as a society—whether we are doing all that we possibly can.

As the BMA put it in its submission to the Public Petitions Committee on the topic last year:

“Now that we have a well-organised, well-funded, comprehensive infrastructure in place, is that enough? Can we say we have done all we can? Or, should we now look to go further and build on this progress by shifting our attention to new ways of increasing the number of donors and the number of lives saved?”

I believe that there is scope to do more and I believe that there is merit in a soft opt-out system of organ donor registration, like the system that is now used in Wales. I will explain why.

We know that there is widespread support across Scotland and across the UK for organ donation. Figures that were quoted in evidence to the committee put the figure at 90 per cent. However, we still face a huge challenge in translating majority support for organ donation into better levels of donor registration.

If organ donation is such a widely supported concept, what is wrong with normalising the practice—a practice that can save lives? For Scotland—a country that has already improved its infrastructure and its capacity to transplant organs—surely the next step is to consider new ways of increasing donation rates through legislative and cultural change and by giving serious consideration to the 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 about what we want to happen to our bodies if the unthinkable should occur.

Of course, there should be rigorous safeguards to make sure that liberty and choice are protected. Presumed consent does not mean doing away with choice, and I do not accept that it curtails liberty. Choice must remain, and safeguards would have to be put in place. Families should be consulted—even when their loved ones have failed to opt—to establish whether they are aware of any objections and whether proceeding with organ donation would cause them distress. Further, we would have to step up on-going campaigns to educate people about organ donation and encourage people to talk to their families about their wishes.

The University of York was commissioned by the organ donation task force to consider the experience of countries that applied the principle of presumed consent to donor registration. It found that, although there were various factors that could be affecting donation rates, the opt-out system was associated with an increase.

The task force decided in 2008 not to recommend a soft opt-out, but it suggested revisiting the issue at a later date. That time has now come, so let us take this opportunity today to put a soft opt-out back on the agenda. Let us take the next step to improve donation rates and, ultimately, to save lives. Let us opt for something better by giving this petition our time, our consideration and our support.

Photo of Jackson Carlaw Jackson Carlaw Conservative

I want to begin by singling out Bob Doris—who is, sadly, not in his place at the moment—for the attention that he gave to the issues around cystic fibrosis, and his summation of those issues. Ten days ago, I crystallised those issues in a motion to which I hope that he will lend his support.

In my opening speech, I concentrated very much on the potential reputational damage issues. In my closing speech, I would like to give voice to Mark Drakeford, the Welsh Minister for Health and Social Services, who responded to the concerns that I raised. He said:

“Those are really important points. The issue of reputational damage to the system, were organ donation to go ahead in circumstances where the donor clearly did not wish it to happen—or vice versa—has preoccupied us during the process of the bill. I say to people who ask me in Wales that opting out will be absolutely as easy as opting in; it will not be made more difficult. We will make sure that anybody who wants to opt out can do it as easily as anybody who wants to opt in can do it. People will be able to opt out at general practitioner surgeries, by visiting the internet site and so on; it will be very straightforward.

The safeguard in our system comes through the role of the family. Donation cannot go ahead without the involvement of the family. As you suggested, someone might have opted in on the register many years previously but might subsequently have changed their mind and come to a different view. If the family knows and is able to tell the clinical team that, even though the individual is on the register as being in favour of organ donation, their views had changed and they would not wish to be a donor, the family’s view would prevail. The safeguard comes through having the discussion at the point where a decision has to be made. We will not rely simply and solely on the register, even though we are confident that the register itself will be as friendly to users and accurate as it can be. … Where people have no family, if they have appointed a representative, the donation will go ahead, but if somebody dies and no family member or representative can be found, the donation will not go ahead. We have had debate about that, because somebody with no family members might have opted in and put their name on the register, but there are issues other than consent. For example, the clinical team will have to pursue with the family issues of medical history and whether the person is in a proper clinical condition to be a donor. From the clinical evidence, we know that those circumstances will be rare but, to protect the integrity of the system, our decision has been that if a person has no family and no representative, the donation will not proceed.”—[Official Report, Public Petitions Committee, 18 February 2014; c 2033-34.]

I hold Drew Smith in high regard and I thought he looked rather crushed—I was slightly affected by the sense of disappointment emanating from him about the position that the minister and I articulated. I say to him that I believe that there is the prospect of achieving the widest possible political consensus around this issue in the chamber. However, it would not be wise to push ahead when we have evolved what I think the Welsh have got right in their legislation without—I do not think that it is such a huge window—giving it the opportunity to prove itself, as it will do in very early course. Any difficulties in it will materialise quite quickly, which will give the opportunity for any legislation that is subsequently produced here in Scotland to reflect that.

Photo of Nigel Don Nigel Don Scottish National Party

I hope that he will forgive the interruption, but I want to address the issue that Jackson Carlaw addressed previously. I recognise that there are other aspects to the debate, but surely if a member of the public has the card in their pocket and is run over by a bus there will be no dispute about their having signed up. If we can encourage people to sign up and to carry the card, much of that debate would go away.

Photo of Jackson Carlaw Jackson Carlaw Conservative

We have been pursuing that course, and Scotland has been more successful in that than any of the other nations in the United Kingdom. It is a remarkable tribute that we are at that point.

I accept that, out of this, there may be the opportunity for far more lives to be saved, but the debate this afternoon has left me deeply troubled. Any progression of the issue should enjoy the widest possible political consensus in Parliament. I think that that political consensus can be achieved, but Mary Scanlon and other members are not quite there yet. It would be wrong to push us there on such an important issue when we could all get there without political confrontation over something that is so terribly important. Confrontation would fundamentally undermine public confidence.

Photo of Drew Smith Drew Smith Labour

I had hoped that one thing that would have come out of the debate would be a commitment from the Scottish Government to a level of consideration and consultation on the issue that goes beyond saying that we will wait to see what another country does before we put the case for change.

Photo of Jackson Carlaw Jackson Carlaw Conservative

I think that that is a slightly ungenerous characterisation of what the minister was suggesting. I find myself very much in agreement with him in all this. In all practical senses, from 1 December 2015 we will have an opportunity early in the next Parliament to assess the implications of the legislation in Wales. If it is proved to have made a significant advance, similar legislation could come to this Parliament, and Conservatives would have a free vote on it whenever it came before Parliament. I would be moved to support it, but I would want to know that we carried public confidence with us. I would also want to be confident that the public would see the Parliament united in that move; if it were not, that could have a profound effect on the reputation of organ donation in Scotland. That is the last thing that any of us wishes to see.

Photo of Neil Findlay Neil Findlay Labour

It has been a welcome and important debate and petition. The Parliament has a duty to discuss, consider and recommend improvements or changes in relation to this type of issue, as it gets right to the heart of one of the most important issues of all—the ability of politicians to make decisions not only to change lives but, as Jim Hume said, to sustain and extend life. That is what is at stake; the matter could not be more important.

Rhoda Grant and Angus MacDonald mentioned that around 600 people are waiting for organ donation. Those people are affected by debilitating conditions and their families are on hold waiting for the phone to ring. Unfortunately, for too many of them, the phone never rings. We have the power to do something about that if only we have the political will to act.

Organ and other forms of transplantation have always been at the cutting edge of medical innovation and development. We have witnessed the most astonishing advances in medical science, from the very first skin grafts of the 19th century through to recent years when, remarkably, we see whole-face transplantation. For a non-scientist and non-medic, those are medical miracles, which have changed and sustained the lives of heart, kidney and liver patients and lung disease sufferers around the world. How many more people could we help if we had a better system that allows more organs to be donated and transplanted? By allowing people to opt out not opt in, we could provide many more donors and donations.

I listened carefully to the Conservative representatives, in particular Jackson Carlaw and his appeal for the issue not to be politicised. Although his was not a party-political speech, given that he raised as one of his great concerns the spectre of the state against the freedom of the individual, he was very ideological in his objections. We can dispel that concern as we debate the issue further.

I, for one, would never say that the issue is simple, but other countries successfully operate an opt-out system. We could and should do that too. It would have to be done with the general public’s buy-in because they are the future donors. We need them to support the move; we need them to be full and active partners in any new system. That can be done. A major public education programme could change things and be highly effective. As Dave Stewart and Margaret McCulloch mentioned, we can put in place safeguards and options for people who have concerns.

The current system sees a third of people register. Some people have their own particular and often very personal reason for not registering; but for many people it is simply something they have just not got round to doing. I suspect that a number of members fall into that category. An opt-out system could change things dramatically not only by providing many more life-saving and life-changing organs for donation, but by raising the debate and breaking down some of the taboos about death and end-of-life care.

Photo of Bob Doris Bob Doris Scottish National Party

I agree that some people do not get around to registering but, in a sense, the same principle would apply to an opt-out system. For example, certain communities are less likely to register to vote or to vote; they might also be the least likely to opt out. That would change the nature of campaigns. A public information campaign would have to take place to encourage people to opt out should they wish to do so. Therefore, a very different dynamic would have to be grappled with.

Photo of Neil Findlay Neil Findlay Labour

Absolutely. Those are the challenges that we face and, if we are serious, we must face up to those challenges.

The opt-out system would also be good for our NHS in raising awareness of health issues, improving the training of staff and, in the long run, saving much-needed resources. Most of all, it would provide extra years of quality life for those affected.

In countries that have adopted the soft opt-out system, the number of organs available has increased. In Norway, the system provides a high level of donation, whereas in neighbouring Sweden, which has a mandated system, the figures are significantly lower. I accept though that, as the British Heart Foundation says, other issues are at play, including the level and quality of infrastructure supporting any system, social norms and practices and some religious interpretations.

I absolutely respect the concerns of Jackson Carlaw, the minister and others but, like Drew Smith, I believe that many of the concerns can be overcome.

The Deputy Presiding Officer:

You have 30 seconds left.

Photo of Neil Findlay Neil Findlay Labour

Several members mentioned the Welsh system and said that the Welsh Assembly has been leading on the matter. It has had an informed public debate and secured public support.

For people who are in need of transplantation, life is very tough, but the thought of healthy, life-changing organs not being available can only exacerbate their feelings of desperation. This Parliament has a chance to change and extend lives and it is my judgment that there would be a majority for such change. I look forward to Anne McTaggart introducing her member’s bill on the matter. It is a difficult and emotive issue, but such issues are what we were elected to this Parliament to debate and to take decisions on. We should do the job that we were elected to do.

Photo of Michael Matheson Michael Matheson Scottish National Party

I listened to the views of members from across the chamber with real interest this afternoon. I recognise that the issue is emotive and that there are a wide range of differing views. However, I want to strike a note of caution. There is a danger that the matter could start to become politically polarised, given the way in which some of the issues are being presented. We must recognise that although there are views across the Parliament for and against opt-out, soft opt-out and opt-in—whichever mechanism people might wish to bring forward—it is important that we all stick together on the shared agenda of looking to increase organ donations in Scotland and finding the best way in which to achieve that.

The approach that we have taken over the past five years has reaped significant improvements—better than in any other part of the UK—and that should not be forgotten. We have taken the approach that we have taken to date in order to build on that progress yet further. On that point, I say to both Rhoda Grant and Drew Smith that there has been no change in the Scottish Government’s position on the matter. Nicola Sturgeon has previously given her personal view on the matter and her view remains the same, as does that of the Cabinet Secretary for Health and Wellbeing—his personal view remains the same. However, the Scottish Government has previously said that it was not persuaded, and the position that we have taken now is that we are not persuaded as yet and want to see how things progress in Wales before we come to a decision on the matter.

However, it is not a question of waiting to see what happens in Wales and doing nothing. It is about doing all the work that we set out in our strategy to continue to build on the excellent progress that has been made over the past five years. I hope that all members will get behind that work in order to ensure that we build on the progress that has been made.

The approach that we have taken in the Scottish Government is based on the expert opinion that has been put to us on what we should do to increase organ donation. I was struck by some of the expert opinion that was given to the committee on the issue. In particular, Dr Stephen Cole from Tayside—Jim Hume mentioned the situation there—is an intensive care consultant and a doctor with a great deal of experience in supporting organ donors and their families. Until recently, he was the regional clinical lead for organ donation for Scotland and he has also been a long-standing member of the Scottish transplant group and the Scottish donation ethics committee, so he is an individual with a lot of experience in the field. He stated:

“The view of most professionals who are closely involved with the organ donation and transplantation process is that an ‘opt out’ system would not convey any additional advantages over and above those which are already seen with the current initiatives. In particular the view of most professionals involved in intensive care where the vast majority of potential organ donors are located is that any assumption or presumption of patient’s wishes would be detrimental to the doctor patient relationship. This could actually result in a reduction in levels of consent and authorisation.”

That is his view on the matter, and it is his view from the professional group that he is involved in. We cannot ignore such a view, and it is important that we recognise it.

I also want to quote the submission from the British Transplant Society, which represents those who work in the transplant field. It stated:

The Society has previously voted on the issue of opt-out legislation and no clear consensus was reached. Concern was expressed by some who voted regarding the effects such legislation would have”.

Photo of Michael Matheson Michael Matheson Scottish National Party

I want to finish the point that I am making. The society went on to state:

“Opt-out legislation has been laid before the Welsh government. It would seem unnecessarily hasty to follow the same route elsewhere in the UK until the result of the Welsh experiment is known, both in terms of changes in organ donor numbers and also the cost involved.”

I think that we should take the reasonable approach of seeing how things progress in Wales, so that we can identify what further measures should be taken here in Scotland.

Photo of Michael Matheson Michael Matheson Scottish National Party

No; I have too much to say.

I want to reiterate a number of points. Over the past six years, there has been a 96 per cent increase in donations, a 63 per cent increase in transplants and a 25 per cent decrease in the number of people on the transplant waiting list. That is due in large part to the work that we have done, particularly the infrastructure work, which has made a significant difference in increasing the number of donors in Scotland. It is important that we build on that and maximise its benefit.

That is why, as a Government, we have said that, at the moment, we are not persuaded of the case for adopting the Welsh system, but we will monitor, review and watch with close interest what happens in Wales. Once we can evaluate the progress that has been made there, we will be able to come to a considered view on whether an opt-out system would add to the significant improvements that we have already made in Scotland.

The Deputy Presiding Officer:

Chic Brodie will respond to the debate on behalf of the Public Petitions Committee.

Photo of Chic Brodie Chic Brodie Scottish National Party

As the deputy convener of the Public Petitions Committee, I am delighted to support the motion in our convener’s name. The tone of the debate and the manner in which it has been conducted have mirrored the emotional nature of the issue that we have discussed.

Like John Wilson, I draw members’ attention to the fact that we are not discussing whether to implement an opt-out system of donation; we are simply recognising that petition PE1453 took us a bit further forward. I recognise that Drew Smith, Mary Scanlon and Bob Doris, in particular, made telling speeches.

On my appointment to the committee, it was suggested to me that progress on the committee’s agenda might be painstaking, difficult and slow, but nothing could be further from the truth. It is a tribute to the convener, my fellow committee members and the clerks that, in my experience, it has proved to be anything but painstaking, difficult and slow. It is also a tribute to all our petitioners, who have sought action from their Parliament on issues such as flooding, the registration of interests by the judiciary and speed cameras, as well as a number of key medical issues, including chronic pain and hypothyroidism. In addition, we have carried out a critical inquiry on child sexual exploitation.

However, none of our work has touched our psyche to as great an extent as the petition that we are debating, although I am sure that the Assisted Suicide (Scotland) Bill will do so when it comes before us for our consideration. Petition PE1453 calls on the Parliament to consider the introduction of an opt-out system for organ donation in Scotland. I pay particular tribute to Caroline Wilson who lodged the petition on behalf of the Evening Times and Kidney Research UK (Scotland). It is a brave petition because it confronts the demands of donation and challenges the emotional approach that is taken by individuals and families alike to an issue that most people would prefer not to encounter. We will have to confront that approach in any subsequent debate that we have on what is an extremely important issue.

The petition also brings our society and the Parliament to a crossroads, without detracting from the progress that has been made on the road that has already been, and is still being, travelled on organ donation. It asks the Parliament to consider a new or alternative route, albeit one with hurdles that have yet to be overcome, such as those of presumed consent and its definition, to which I will come later.

The choice before the committee was to consider proceeding with the petition, which called for a change from the existing opt-in system for organ donation, in which an individual expressly states their wish that their organs and tissues should be donated by joining the organ donor register, to an opt-out system, in which it is assumed that organs and tissues are available for transplant unless there are specific instructions to the contrary. The issues of emotion and distress enter the debate regardless of whether we are talking about a soft opt-in system, in which the family of the deceased can object, or a soft opt-out system, in which they can determine whether to proceed after consulting the appropriate authority. The hard options are clearer.

It cannot be denied that, whichever route is chosen, organ donation saves lives, as Mark Drakeford succinctly pointed out. In his powerful speech, Jackson Carlaw stressed the evidence that we took from Mark Drakeford. We all know that Wales is moving to a soft opt-out system, which the BMA is promoting. As David Stewart said, 35 people in Wales died last year while they were on the transplant waiting list. That was but one reasonable argument for considering the petition and its progress seriously.

Organ donation saves lives. The committee’s recommendation to the Scottish Government and the Government’s further proposals will await the evaluation of the impact of the Welsh legislation. While we wait for that, I applaud the Evening Times and NHS Greater Glasgow and Clyde for bringing organ donation to the forefront of our minds, through their respect my dying wish campaign, and keeping it there.

We cannot deny that the proposals by the organ donation task force in the recent past and the recommendations in “A Donation and Transplantation Plan for Scotland 2013-2020” seem to be having an effect. Since January 2008, when the task force published its first report, with 14 recommendations on overcoming barriers to organ donation and achieving an outcome of increasing the organ donation level by 50 per cent over five years, Scotland has achieved a 74 per cent increase. In its second phase, the task force considered the measures that might be required to move to an opt-out system. It referred to caveats on risk, but it did not rule out such a system.

In the transplantation plan for 2013 to 2020, the Scottish Government set an expectation for Scotland to be among the best-performing countries in the world on organ donation. If the high-level outcomes and priorities for action—21 in total—are implemented in full and achieved, they will secure the objective of the plan and of the Scottish transplant group.

Over the past six years, donations have increased by 96 per cent, transplants have increased by 62 per cent and registrations have increased by 25 per cent. That suggests that the plan is working, but the trend will depend on achieving priorities such as funding and delivering high-profile organ donation awareness campaigns, so that the public are informed about and engaged in the organ donation and transplantation issues. The petition and today’s debate will certainly add to that.

Above all, it is incumbent on the existing framework or the proposed soft opt-out system to ensure that all parts of the NHS in Scotland and the public support donation and transplantation. The Scottish Government should publish an annual report card on the four or five key national measures for organ donation, whether we have a soft opt-in or a soft opt-out system.

When the Government reviews progress, we must consider all aspects of progress. If we go down the opt-out route, we must measure the success or otherwise that the Welsh programme has brought.

I mentioned at the beginning of my speech the emotional impact that is associated with the soft opt-out option. I have no doubt that that will be a consideration in the debate.

In this sensitive area, consultation, education and engagement are essential if the Scottish Government is to be persuaded to follow the Welsh route. There is no doubt that the Government remains committed to organ donation, whatever process we follow.

On this sensitive subject, on which members will have their personal views, we must of course take advice not just from experts but from the families who might be or have been affected.

I like to think of the Public Petitions Committee as the prodding committee. Today, I and, I am sure, the other committee members, applaud the petitioner, Caroline Wilson, and the Evening Times and Kidney Research UK, for prodding us on this very important issue.