Meeting date: Tuesday, June 11, 2019
Meeting of the Parliament 11 June 2019
Agenda: Time for Reflection, Topical Question Time, Primary 1 Standardised Assessments, Fuel Poverty (Targets, Definition and Strategy) (Scotland) Bill, Human Tissue (Authorisation) (Scotland) Bill: Stage 3, Human Tissue (Authorisation) (Scotland) Bill, Standing Orders (Rules Changes), Decision Time, The Way of St Andrews
- Time for Reflection
- Topical Question Time
- Primary 1 Standardised Assessments
- Fuel Poverty (Targets, Definition and Strategy) (Scotland) Bill
- Human Tissue (Authorisation) (Scotland) Bill: Stage 3
- Human Tissue (Authorisation) (Scotland) Bill
- Standing Orders (Rules Changes)
- Decision Time
- The Way of St Andrews
Human Tissue (Authorisation) (Scotland) Bill
The next item of business is a debate on motion S5M-17615, in the name of Joe FitzPatrick, on the Human Tissue (Authorisation) (Scotland) Bill at stage 3. I invite all members who wish to speak in the debate to press their request-to-speak buttons as soon as possible.15:58
I welcome the opportunity to open the stage 3 debate on the Human Tissue (Authorisation) (Scotland) Bill. I am proud to have led the bill through the Parliament, but I start by recognising the work of my predecessors in relation to both the bill and wider improvements in the transplantation landscape. Since the early days of the Parliament, there has been much discussion about the pros and cons of moving to an opt-out system. I put on record my thanks to the bill team and other officials who have got us to the stage of having a bill that I am clear will be a positive addition to the work that has delivered so much progress over the past decade.
I also thank the Health and Sport Committee for its consideration of and sensitive approach to scrutiny of the bill. That approach reflects the committee’s understanding of the circumstances in which organ and tissue donation must take place as a result of the incredible generosity of donors and their families.
I also thank other members for having taken the time to discuss their concerns with me, particularly Mike Rumbles, Jeremy Balfour and Gordon Lindhurst, who lodged amendments at stage 2 that facilitated further refinement, discussion and clarification of the operation of the bill.
There is no one answer to increasing organ and tissue donation, which is why we must continue to build on the measures that have been put in place over the past 13 years, to which this bill contributes.
The primary aim of the bill is to introduce an opt-out system of organ and tissue donation for deceased donors. The bill amends the Human Tissue (Scotland) Act 2006, the existing Scottish legislation that supports donation, by introducing a new additional form of authorisation called “deemed authorisation”. In practice, deemed authorisation means that, when a person who is aged 16 or over is not known to have any objection to donation, donation may proceed. However, the bill contains safeguards for people who do not have the capacity to understand deemed authorisation or who have resided in Scotland for less than 12 months and may not be aware of the system, who will not be subject to deemed authorisation.
Key to the success of donation are donor families and the way in which they are approached. The bill ensures that the donor’s interests and views are safeguarded at all times by including a clear and effective mechanism for that. There is a duty on health workers to make inquiries of families and others who are entitled to provide information that reflects the most recent views of the donor. The committee was given a demonstration by the specialist nurses for organ donation on how the approach is made to families and the sensitive and supportive way in which families are guided through the process at such a difficult time. That approach is a real strength of the current system, and it will continue under the new system.
There is a high awareness of donation in Scotland, and the importance of information and awareness was the subject of a lot of discussion in the committee and during the stage 1 debate. I welcome the strengthening of the duty to promote information and awareness in the bill by amendments that were developed in collaboration with Lewis Macdonald and David Stewart.
I reiterate to members our intention and commitment to fulfil that duty. We are committed to an awareness-raising campaign of at least 12 months during the lead-up to the introduction of the opt-out system. We will take time in that period to work with communications experts and representative groups to ensure that information is accessible to different groups in the population, including hard-to-reach groups, minority groups and those with specific needs. In addition to the multimedia activity that is planned, there will be a direct mailing to all households in Scotland in the lead-up to the system’s introduction to explain the change in the law, including, among other things, information about how a person can opt into or out of donation.
The secondary school education pack, which is highly regarded as good practice, will be updated and disseminated, and we are also exploring how information can be provided to young people when they reach 16 years of age, so that they are aware of the opt-out system and can make an informed choice about their donation decision.
We will continue to work with Kidney Research UK to train its volunteer peer educators, who are a valuable resource in raising awareness of donation and transplantation among ethnic minority groups. In that respect, I am delighted that Kidney Research UK has invited officials to speak about the opt-out system at its conference with imams in July, to raise awareness of donation and transplantation.
The bill makes an important contribution to the development of donation and transplantation, and I thank the experts in the national health service who have guided us through the sensitive and complex issues in the process. They have worked with us to develop a legal framework for authorisation of donations that respects those issues.
As we move towards the introduction of the opt-out system, we will work with the NHS to ensure that NHS systems are developed and that the people who work in donation and transplantation have the necessary guidance and training that will be needed to deliver a new system safely and successfully.
The work to increase donation and transplantation will not stop with the passing of the bill. Less than 1 per cent of the population die in circumstances in which donation is possible, so it is important that we continue to find different ways to make progress.
I want to be clear about what progress means to the lives of those who are awaiting a transplant. Members might not know Gordon Hutchinson by name, but they might recognise him from his scar. Gordon has featured as part of the donation campaign in Scotland for the past six years. Since his transplant as a child, he has gone on to live a full life. He has married and has recently become the proud father of a baby girl. In relation to his transplant, Gordon has said:
“The life I lived before the heart transplant compared to my life now is night and day ... An organ donor saved my life.”
For the many people who are awaiting a life-changing transplantation operation, I move,
That the Parliament agrees that the Human Tissue (Authorisation) (Scotland) Bill be passed.16:05
For many families and campaigners across Scotland, today is an incredibly important day. Every day in the United Kingdom, three people die waiting for a new organ. As has been outlined, more than 500 people in Scotland are waiting for a transplant that could save their lives. Across the UK, Scotland has the highest proportion of people on the organ donor register, but it has the lowest rate of family consent and the lowest rate of organ donation.
Giving the gift of life is an extraordinarily special thing for someone to do following the death of a family member. Like the minister, I pay tribute to those who have already taken the decision to join the organ donor register; I also pay tribute to their families for the work that they need to undertake to ensure that the person’s wishes are met. Making it easier for an individual to express their personal wishes and starting a national conversation on organ donation are at the heart of what we are trying to achieve today.
I pay tribute, too, to those who have worked on the issue in this parliamentary session and in previous sessions, including Anne McTaggart and Mark Griffin.
I thank those who gave evidence to and met the Health and Sport Committee during our inquiries. I think that I speak for all members of the committee when I say that their personal experiences have stayed with us and helped to take forward and shape the committee’s suggestions on how the bill could be strengthened and improved. As the minister outlined, key to the success of any organ donation programme is learning from the experiences of a donor’s family and friends, because that can help to improve decisions and the experiences of others during the hardest time that anyone can imagine.
The experience in Wales was raised repeatedly during the Parliament’s scrutiny of the bill. It is clear that significant and positive progress has been made in Wales, and learning from what has happened there could help us to improve our system in Scotland. In Wales, family consent rates have increased from less than 49 per cent to 70 per cent following the introduction of an opt-out system in 2015. That is welcome progress, and I hope that the same progress will be realised soon in Scotland.
I know that members still believe that the specific issue of the provision of intensive care beds across the country—particularly in the Highlands and the south of Scotland—needs to be addressed further. Scotland has the lowest number of intensive care beds anywhere in the United Kingdom. That was highlighted by the Royal College of Physicians of Edinburgh at stage 2, and my Health and Sport Committee colleague David Stewart raised the issue, too. As the bill progressed, we both thought about lodging amendments to tackle the problem, but I do not think that doing so in this bill would have been useful or appropriate.
However, there needs to be further discussion, and the Scottish Government needs to clarify its commitments and further proposals, as the issue will ultimately affect the potential success of the bill. I welcome the minister’s constructive approach to working with the committee, but I would like to see further details and an assessment of future staffing and provision of intensive care beds, along with a commitment to keep the issue under review as the bill’s provisions are implemented.
People whom I meet who have received a donation send the clear message that the collaborative approach between the organ donation teams and families has literally had a life-saving impact. Like the minister, I thank them for their work. One donor can save up to nine lives and can transform even more by donating tissues. Thanks to the generosity of donors and their families, and the work of the NHS, great progress on organ donation has been made over the past few years. I hope that the minister will ensure that he provides an innovative and positive public information campaign, which will capture the positive spirit of what it is to be a donor and the points that families have expressed during the committee’s work.
We need to work to continue to make progress, increase donor numbers and save the lives of more people in Scotland and the UK. I believe that the bill can and will deliver on its two main aims: further increasing the number of donors; and honouring the decision that a donor has taken during their life.
From speaking to people who have received an organ and their families, I know how incredibly thankful they are to the individual donors and their families. What it means to someone whose son or daughter has been saved by a total stranger genuinely cannot be put into words sometimes. I hope that the passing of the bill will help to take forward a positive national conversation for donors.
I will conclude with the words of Steve Donaldson from Largs in North Ayrshire, who is 57 years old. He had a heart transplant in 2010 after suffering severe heart failure. He waited for nine months on the organ donor transplant list before a suitable donor was found. The briefing that the British Heart Foundation provided for this debate states that he said:
“My message to everyone is please sign the organ donation register and have that conversation with your family about your wishes. It really can make all the difference.”
As a Parliament, we are currently debating and passing many pieces of legislation—although maybe not as efficiently as we are today. However, none can be as important and have such a life-changing impact as the Human Tissue (Authorisation) (Scotland) Bill. We should all rightly be proud of passing it.16:11
This is, of course, crucial legislation. How do we raise the level of organ donation in Scotland to match the needs of those who are desperately awaiting transplantation? The principles of the bill have been broadly accepted across the political divide, notwithstanding the lodging of a number of amendments that were designed to improve and, indeed, develop it. I acknowledge the help of the minister and his officials with my amendment, which is now in Joe FitzPatrick’s name—I stress that no copyright fee is required.
Scottish Labour has long been supportive of a soft opt-out for organ donation, and we are glad that Scotland is finally moving to adopt such a system. Credit should be given to individuals across the political divide who have consistently campaigned for that change. In particular, we owe our thanks to Scottish Labour’s Anne McTaggart for her proposed member’s bill in the previous session of Parliament. Although it was unsuccessful, it significantly moved the debate forward. I also acknowledge the fantastic contribution of Mark Griffin, who has a big family relationship with the issue.
Wales has led the way on the issue. Although it is still relatively early to assess the impact of the legisation there, there are positive signs of increased levels of family consent and donations. We must learn from the experience of implementation in Wales, including, as the minister said, about the importance of resourcing the public awareness and information campaigns. Scottish Labour’s successful amendments at stage 2 have strengthened the awareness-raising elements of the bill by requiring annual campaigns. We have also secured a five-year assessment of the changes so that there will be clear learning on the effectiveness of implementation and improvements in organ transplantation.
However, the bill is not the only change that is needed to increase transplantation rates in Scotland. The Scottish Government must ensure that there is sufficient investment in Scotland’s infrastructure to support an increase in organ donations. As we have heard from previous speakers, including the minister, in 2018, 426 patients in the UK died while they were on the transplant list or within one year of removal. As Miles Briggs said, Scotland has the highest percentage of people on the organ donation register in the UK but the lowest actual organ donation rate per million of population. The level of family authorisation is also low in Scotland.
The key issue is the gap between those who wish to donate organs and the number who actually go on to join the organ donation register: 80 per cent of people in Scotland support donation, but only 52 per cent have signed up to the donation register. In simplistic terms, the bill’s purpose is to bridge that divide and encourage those who support organ donation but who have not registered on the ODR to have their wishes recorded and respected.
Let me tell you about my friend Gary. He is in his mid-50s and lives in Glenrothes, in Fife. Nearly two years ago, he was given the gift of life by a crucial heart transplant. Prior to that, he was on the transplant list for 12 months and had a pacemaker. He slowly deteriorated and, without the transplant, he would have died. Gary cannot praise enough the dedicated support of the nursing staff at the Golden Jubilee hospital. He told me that
“it was a matter of life or death.”
We must look at international evidence and best practice, which are crucial. We know, from background research by the British Heart Foundation, that people who live in countries with a soft opt-out system are more willing to donate their organs. In general terms, a soft opt-out means that, unless the deceased expressed a wish in life not to be an organ donor, consent is assumed.
Of the top 10 countries for donors per million of population, nine have an opt-out system. That brings us to Spain, which I mentioned at stage 1 and which leads the world league table for organ donations. The Health and Sport Committee took evidence on why Spain is so successful, which I know the minister has a big interest in. The three main reasons are that Spain has a comprehensive network of transplant co-ordinators, it has a donor detection programme and it provides more intensive care beds. In winding up, will the minister comment on that? Given that this is not a zero-sum game, we must concentrate on increasing the number of intensive care beds as well as changing the consent system.
I will be brief, as I am conscious of the time.
In the stage 1 debate, I spoke about two issues that the Law Society of Scotland raised, so the minister has had warning of them. The Law Society asked whether deemed authorisation is consistent with the ruling in Montgomery v Lanarkshire Health Board, which was a Supreme Court case about informed consent. It also asked whether the bill is consistent with the European convention on human rights, as dealt with in the case of Elberte v Latvia in 2015, when article 8 was found to have been breached. The five-year review will allow considered reflection on those points. What assessment has been made that medical professionals will, in practice, take into account the family’s wishes?
The bill is a vital piece of legislation that will be a matter of life and death for many Scots, such as my friend Gary, who desperately need a life-saving organ donation. As Gibran said,
“You give little when you give of your possessions. It is when you give of yourself that you truly give.”
I call Alison Johnstone to close—I mean to open—for the Scottish Green Party.16:17
I, too, thank all those who have campaigned for many years to change the law. I thank the Royal College of Nursing, the British Medical Association, the British Heart Foundation and the Law Society of Scotland for their briefings, and I express my gratitude to Mark Griffin for his lengthy campaigning and to Anne McTaggart for her work to introduce a bill in 2015. Although that bill did not win support in Parliament, it was a key impetus for change.
The policy memorandum reminds us that
“Organ and tissue donation and transplantation is an incredible development in modern healthcare which continues to save and significantly improve lives.”
The Greens strongly support the intent of this important bill. The policy memorandum also reminds us that
“Organ and tissue donation and transplantation is dependent on the generosity, commitment and skill of a number of ... people.”
I thank them all.
As we have heard again today, Scotland does well on donor registration, with 52 per cent of people in Scotland having signed up to the organ donor register. That is the highest percentage in the UK, but a gap persists—David Stewart spoke strongly about it—between that figure and the approximately 80 per cent of people who support organ donation. The results of a new poll that the British Heart Foundation released today revealed that seven in 10 people in Scotland back the proposed changes to organ donation law. It is clear that the will to donate exists, and I hope that the bill will help to tackle the disparity between people’s intentions and the number of donations.
Scotland’s family authorisation rate for organ donation is the lowest in the UK, which results in the loss of about 100 potential donors a year. Evidence from elsewhere in the UK suggests that the bill can go some way towards rectifying that. In Wales, the family approval rate for organ donation has increased from 49 to 72 per cent since the opt-out system was introduced, so I am optimistic that a similar pattern will emerge in Scotland and that the number of family consents will rise, which will lead to an increase in donations.
Nevertheless, during the stage 1 debate, I and others highlighted that an opt-out system on its own is not an instant solution, but must be part of a broader strategy to increase donations. Therefore, I am pleased that a duty will be placed on the Scottish ministers to provide information annually to the public about how to opt in or out of the system. Ultimately, it is preferable to maximise the number of people opting in, as that will remove any ambiguity about the patient’s wishes and, I hope, allay family members’ concerns about going against their wishes.
Healthcare professionals must be given comprehensive guidance about the changes to organ donation that are proposed in the bill. The Royal College of Nursing has revealed that only 25 per cent of its members feel that they can speak with confidence about organ donation with patients and their families, so much work is still to be done to raise awareness among healthcare professionals.
The RCN has called for an education programme for all healthcare professionals and sufficient resources for the education and training of the wider nursing workforce, to support a shift in the culture of conversations on donations. It is really important that we empower our healthcare professionals to speak confidently to patients about organ donation and to address any concerns or fears that the change in legislation might cause.
I thank the BMA for sharing a number of personal stories about organ donation. I will focus on the words of Gill Hollis:
“The lung transplant I received in 2004 took me from being close to death to living again ... My transplant was the most amazing gift, and I have nothing but gratitude for my donor family and the medical team.”
I hope that the bill will lead to more stories like Gill’s and enable more people to give the gift of life.16:21
The keeper of organisational memory and parliamentary history, Mike Rumbles, remarked to me just a few moments ago that he thinks the timing of these stage 3 proceedings is a record, given the swift way in which we have dispatched all the amendments. The brevity of the proceedings speaks to the consensus that has been built around the bill. However, as Alison Johnstone said, that has not happened in isolation. I, too, reflect on the contributions of Anne McTaggart in the previous parliamentary session and Mark Griffin, who, it is fair to say, held the feet of the Health and Sport Committee and the Government to the fire in the early days of this session to ensure that we got to this day. I thank him very much for getting us to this point and, indeed, the Government for making good on its commitment to do so.
This is an emotional and joyful day for me. As I said during the stage 1 proceedings, as an aspiring political candidate—which, I am sure, all members were once—I was often asked at hustings what my member’s bill would be if I made it to the Scottish Parliament. This is that bill, because I have a lifetime of understanding the need for organ donation and, indeed, because of the paucity of organ donation that has until this day existed in this country. My good friend Anders Gibson suffered from cystic fibrosis, and I grew up with him with the expectation that his life would be cut short. It is to my great sadness that Anders did not live to see this day. Ultimately, when his lung transplant came, it was too late and it did not take properly. I speak in his memory today, and I know that he is looking down on us with great pleasure at what this Parliament is about to do.
Organ donation is vital. There is not enough of it, so I was keen to host a reception and a photo call earlier this year for Give a Kidney, which is a UK philanthropic kidney donation organisation. There are people who give healthy kidneys to complete strangers altruistically—completely out of the will to be philanthropic and to give life to others who might have to suffer protracted periods on dialysis or even limitations to their life. I salute that organisation.
It was in the foothills of our preparation for the legislation that I learned the full extent of what goes into the organ donation process. I am sure that I speak for all committee members when I talk about our experience of meeting the specialist organ donation nurses, who are angels heaven sent and a credit to our national health service. It was a great privilege to meet them. They talked about the onerous bureaucracy of the process, and committee members found it quite shocking to be told how many intimate questions were asked of a soon-to-be-deceased relative in the final hours, literally at their loved one’s bedside. They talked about turning that process into the telling of a life story and about finding mirth and merriment in what for everyone concerned would be their darkest hours.
We also met transplant recipients, which is when the idea of organ donation as a gift really struck home and I understood the sheer magnitude of the present that someone can give in the last hours of their life to someone who is unknown to them, who can go on to live a happy and fulfilling existence because of the organs that they receive. We learned about the rollercoaster of emotions that goes with that. Anders experienced that, too. He had a couple of false starts that involved being driven to Newcastle and returning after the transplant fell through. I hope that the minister will address that point in his closing remarks and talk about the mental health support that we can give to people who are on transplant waiting lists.
We must recognise that what we are doing involves only one aspect of this area and that encouraging people to have conversations about organ donation is also important.
I will finish with a quote from Simon Gillespie, the chief executive of the British Heart Foundation. He said:
“There is a desperate shortage of organ donors. Introducing an opt-out system will better reflect the views of the general public and give hope to those currently waiting for a transplant they so desperately need.”
We support the bill.
We now move to the open debate. I ask for speeches of four minutes.16:26
I am pleased to be able to speak in support of the Human Tissue (Authorisation) (Scotland) Bill this afternoon. From the outset, I emphasise that, at any one time, 500 people in Scotland are waiting for a transplant, which shows the need for Parliament to take action and support the bill.
As deputy convener of the Health and Sport Committee, I have had the opportunity to participate in much of the scrutiny of the bill at stage 2, and I thank everyone who provided briefings during the bill’s progress through Parliament, including Anne McTaggart, Mark Griffin, who is in the chamber today, the BMA and the other professional organisations.
As I was a nurse and liver transplant team member in Los Angeles, California, I was especially grateful to hear from the people who were either waiting on an organ or those who had received one. I have heard many pre-transplant stories from patients who were about to be recipients of organs. The personal voices of the recipients and people waiting for organs were vital in helping to inform committee members, and I thank all who came to speak to us.
It is useful to again stress that the bill’s principal aim, which I am pleased that the Parliament overwhelmingly supported at stage 1, is to bring about a long-term culture change to encourage people to support organ and tissue donation by registering on the organ donation register and by moving to a soft opt-out system.
Just over half of Scotland’s population have registered to donate their organs or tissue after death, which reflects their incredible generosity and the progress that has been made in highlighting the need for organ donors, which is absolutely welcome. However, if we are to achieve the aim of reducing the number of people dying as a result of the unavailability of organs, we need more people to register.
Most organ and tissue donations can occur only in tragic circumstances, and only 1 per cent of people die in situations in which they could be an organ donor. Given the clear need for more organs to save lives, the bill will therefore introduce deemed authorisation for deceased donation where an adult has not clearly opted in or out. That means that when someone dies and has not made their wishes on donation known, their consent to donation would be assumed and conversations regarding the commencement of donation processes could occur.
The committee received evidence and submissions from some people who were concerned that the deemed consent element of the bill meant that people’s organs might be donated even though they had not opted out only because, for example, they had never got around to it. I address that argument by assuring people that the bill includes safeguards to ensure that the donation wishes of the deceased are followed. The bill also provides a legal framework for pre-death procedures that facilitate successful donation for transplantation, so that people are educated and encouraged to make their wishes known. The section of the bill that addresses opt-out declarations by an adult can be found on page 16.
The committee received submissions and took oral evidence from people who were concerned about a lack of public awareness of the change in legislation. That was initially a concern for me, too, so I am pleased that the Scottish Government has committed to continuing high-profile awareness-raising activity every year and to promoting a continued national conversation. The Scottish Government’s campaign, “We need everybody”, which was launched in July 2016, has been a success and has led to an increase in the number of people who join the organ donor register.
I am probably the only person in this chamber who has held a kidney, a pancreas, a liver and a heart in my hands, for the organ to be placed into another person. I encourage everyone to consider registering to be a tissue and organ donor and to offer that gift to save someone’s life. I urge all members to vote in favour of the bill.16:30
The bill gives us a fresh opportunity to maximise organ donation and help some of the hundreds of people who are waiting for organ transplants that could save their lives. Instead of presuming that people do not want to donate their organs after death unless they have opted in, we will presume that people want to donate unless they have opted out.
That change is made within the framework of the law as it stands. The bill amends the Human Tissue (Scotland) Act 2006—it is evolution, not revolution, which I welcome; in this case, not least because I took the current law through the Parliament and I believed then that it laid the foundations for whatever evolution in the law might be needed in the future.
Before 2006, people did not authorise transplantation of their organs after death; they consented to transplantation. The difference between “consent” and “authorisation” is not just the difference between two words. Providing for authorisation makes the law far clearer than it was, in requiring that people’s wishes on these matters be followed.
The 2006 act called for a concerted effort to tell people how authorisation works and to explain the difference that organ donation can make. Successive Governments have delivered on that. As a result, Scotland achieved the highest rates of authorisation in the UK over several years—the level is now half the adult population, although, as members said, that is not the whole story.
The 2006 act was designed to enable the further development of the transplantation infrastructure in Scotland. As members said, the Health and Sport Committee heard impressive evidence from specialist nurses in organ donation about how the system works.
Despite all that progress and our high rate of opting in, Scotland has the highest rate of bereaved relatives saying no to organ donation. Health professionals are understandably reluctant to challenge a family’s right to do that at what is already a very sad and stressful time. The law should not seek to reduce the family’s right to be heard, nor should it compromise the duty of care that doctors and nurses owe to the bereaved at the time of death.
Instead, the bill seeks to widen the pool of people from whom organ donation might come. We are following the lead that Wales took in 2015, and a similar change will happen in England in 2020. Rates of donation in Wales have now overtaken rates in Scotland. The coming into force, in 2015, of the Human Transplantation (Wales) Act 2013 was the trigger for increased public awareness. It took some time for that to result in increasing rates of organ donation, but that is now happening, and the time is right to follow Wales’s lead.
As other members have done, I thank my colleague Mark Griffin and my former colleague Anne McTaggart for their efforts to introduce the principle of opting out, in place of opting in. The Scottish Government has now enabled that principle within the framework of the existing law, and with broad cross-party support, as has been evident today.
Our passing this bill can help to increase rates of donation and save lives, but changing the law will not in itself be enough. Amendments that we agreed to today mandate ministers to use the bill to raise awareness and encourage people to authorise donation, even though deemed authorisation will be in place, and to strengthen the transplantation infrastructure in Scotland.
We also agreed that ministers should review the legislation, including the way in which the new approach has been communicated, in five years’ time.
We should renew the promise that the Parliament made in 2006. We will give the measures every support, to achieve the change that we want to see, but if the Parliament needs to return to this topic in the future, it should not hesitate to do so.16:34
It is a pleasure to speak in the debate knowing that at decision time the Parliament will, I believe, vote for a bill that MSPs past and present, third sector organisations such as the British Heart Foundation, healthcare professionals and, indeed, patients themselves have long been calling for.
The Human Tissue (Authorisation) (Scotland) Bill, like Anne McTaggart’s member’s bill—the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill that was introduced in the previous session—is intended to increase the availability of organs and tissue for transplantation and therefore reduce the number of people who are waiting for a transplant. At stage 1, members shared moving stories of loved ones or constituents who waited too long for an organ and the grave consequences that that can have. Indeed, almost 600 people in Scotland are waiting for a potentially life-saving organ. If the bill can achieve any reduction in that number, all of us can and should get behind it.
The bill contains three key provisions: as well as giving people the ability to opt in by explicitly stating their authorisation for donation and to opt out by explicitly removing authorisation, it provides for deemed authorisation, which will be the default option if someone has not recorded their wishes.
The development of that soft opt-out system will enable us to more easily capture the estimated 80 to 90 per cent of Scots who support organ donation, while closing the gap between the number of people who state that they would wish to donate and the number who actually sign up to the organ donor register. Given that an overwhelming majority of people would wish their organs to be donated, it can be surmised that many of the 48 per cent of Scots who are not registered donors have simply not got round to opting in. The bill will help to capture those folk, who have the potential to save lives by donating their organs and tissue.
Of course, individual choice must be protected. That is why the bill introduces a soft opt-out that incorporates safeguards and conditions that might include seeking authorisation from a person’s nearest relative in cases involving certain groups of people or specific circumstances. Deemed authorisation will not apply to under-16s, people who have been resident in Scotland for less than 12 months and those without capacity. It will not be a case of asking the family for their views or overriding the wishes of donors; the family will be asked what they believe were the views of their deceased relative.
Unfortunately, at just 57 per cent in 2017-18, Scotland has the lowest level of family authorisation in the UK. I am glad, therefore, that the Scottish Government has taken an evidence-based approach to resolving the situation. There is strong evidence to suggest that such legislation will improve levels of family authorisation by encouraging frank conversations between relatives about their wishes. Indeed, people who live in countries with opt-out systems are between 27 and 56 per cent more likely to authorise donation of their relatives’ organs. That has absolutely been the case in Wales, where consent rates have risen from 49 per cent in 2014-15 to 72 per cent, and I hope to see a similar uplift in Scotland.
I am grateful to the Health and Sport Committee for its excellent work in scrutinising the bill and strengthening it at stage 2. I am particularly grateful for the amendment to place a duty on the Scottish ministers to promote an annual awareness-raising and information campaign that will give people regular opportunities to make or review their decision about whether to donate. The amendments that were agreed to earlier this afternoon will also help. We know about the power that such awareness raising can have—the duty on the Scottish ministers to promote awareness of donation in the Human Tissue (Scotland) Act 2006 resulted in year-on-year increases in the number of people recording their decisions on the organ donation register. The Human Tissue (Authorisation) (Scotland) Bill will have an even greater impact.
I am certain that deemed authorisation will drive a long-term increase in support for organ and tissue donation. Perhaps it is even the case that the bill’s progress through Parliament has inspired more people to discuss donation with loved ones, which can only be a good thing.
Of course, the ability to transplant is always reliant on the medical viability of organs, which the bill cannot legislate for. At stage 1, the minister highlighted other work that the Government is undertaking to increase the number of viable organs, such as providing funding for new technology to improve the outcomes of patients who receive liver transplants and to increase the proportion that are suitable for transplantation. That work is to be commended and should be built on.
I pay tribute to everyone who has donated and every family that has supported and facilitated those donations; in doing so, they have saved and improved lives. That is truly a gift, and it is one that the bill will help to bestow on untold numbers of lives in the future.16:38
I am convinced that if we pass the bill at decision time, there will be a greater chance of saving lives, so why was I the only MSP to vote against the bill at stage 1? Let me explain.
I have been on the organ donation register for the past 20 years. It is heartening to see that a majority of Scots are now on the register, too. That has come about through many measures, not least of which is the Human Tissue (Scotland) Act 2006, which Lewis Macdonald mentioned, in which we focused on the wishes of the deceased rather than on the wishes of his or her nearest relative. When I first saw the bill after publication, I was perturbed that the safeguards in it were not sufficient in respect of the wishes of the potential donor. By that I mean that it seemed to me that there was a danger that the wishes of the potential donor might, in some cases, be ignored.
There was one phrase in the bill which I thought could undermine the success of the legislation. The bill originally said in section 7 that deemed authorisation would not apply if
“a person provides evidence to a health worker that would convince a reasonable person that ... the adult was unwilling”
for transplantation to take place. The evidential bar for the family of the deceased to confirm the wishes of the deceased was being raised unnecessarily. The legislation in England and in Wales does not do that; in my view, there was no need for our legislation to raise the evidential bar in that way. I was concerned that if that was not changed at stage 2, and if in even one case the nearest relative of the donor could not provide evidence that would “convince”, and a donation went ahead against what the relatives believed were the wishes of the deceased, the legislation could be undermined.
I am very pleased that Joe FitzPatrick, the Minister for Public Health, Sport and Wellbeing, took on board my point and lodged Government amendments to alter the bill which have had the same effect as my amendments would have had, so I was happy to withdraw them. The bill now states that if
“a person provides evidence to a health worker that would lead a reasonable person to conclude that ... the adult’s most recent view was that”
he or she was unwilling for donation to take place, that would be acted upon.
Will the member give way?
I only have 40 seconds left.
With that safeguard now in place, I will be more than happy to support the bill at decision time.
Joe FitzPatrick was willing to take my concerns on board and to change the wording of the bill. With only my vote against it at stage 1, he was not under any real pressure to change the bill, but he took the time and made the effort to get this right. Presiding Officer, I want to put on the record my thanks to Joe FitzPatrick, and I want to thank you for providing me with the opportunity to do so in the debate.16:42
I say to Mike Rumbles that I abstained at stage 1. I support organ donation and carry a donor card. I encourage others to go on the register, and much in the bill is commendable.
However, three words do not appear in the bill—“donation” and “presumed consent”. These have been displaced by “transplantation” and “deemed authorisation” respectively. I ask myself why.
I suggest that the terms are used to assuage any concerns that members might have, because “donation” requires the owner of something to transfer it voluntarily to someone else: it is a gift. A person cannot make a gift if they are dead and have not registered as a donor. “Presumed consent” is a prime example of an oxymoron: consent cannot be presumed, but must be indicated in some form or other, no matter how minute it is: the blink of an eye in response to, “One blink for yes, two blinks for no,” would do.
In my view, that is why “organ donation” and “presumed consent” have been rebadged as “transplantation” and “deemed authorisation”. The greater deceit is to say that “deemed authorisation” is somehow different from “presumed consent”, although Emma Harper transposed the two—and she is quite right. My consenting to someone hitting me with a brick will have the same result as my authorising them to do it: I will still have been hit by a brick. Consent and authorisation are one and the same. Neither authorisation nor consent can be “presumed” or “deemed” in the vital absence of an indication either way. In my view, it is wrong for the state to do so on behalf of a silent deceased person.
Although I fully support the intention of the bill, I regret that I cannot support it as it is worded. I understand that it is well intended, and I want people to have access to organs, but I cannot support the bill as it stands. Accordingly, I will not support it at decision time.16:44
This has been an excellent debate with well-informed and thoughtful contributions from across the chamber. I believe that the key point that has been echoed by several members is that the bill is crucial legislation because we need to raise the level of organ donation in Scotland to match the number of people who are desperately awaiting transplants.
Miles Briggs, who is currently absent from the chamber, paid tribute to people who are on the organ donation register and their families. He is right that we need to start a national conversation. He was also right to thank all those who gave evidence to the Health and Sport Committee. I believe that it is important that we analyse the experience in Wales, albeit that the system there is still relatively new. I summarise his point on that by saying that he said that where Wales walks, we follow. He was also correct that we should look at provision of intensive care beds.
Alison Johnstone made the important point that organ transplantation is a vital development of scientific healthcare. As she said, there is a will to donate in Scotland, as has been clearly evidenced in polling. I agree that the number of family consents will rise, and that it is important to have the wider strategy of annually analysing opt-ins and opt-outs.
Alex Cole-Hamilton made the genuine point that, before he was elected, his wish for a member’s bill would have been to have one on organ donation. He also made the vital point that the gift of giving has always been there, and we should always remember that. I agree with him that it is important to praise organ donation nurses, some of whom members of the Health and Sport Committee met. We should never forget the need to tell donors’ life stories.
Emma Harper, who is a former nurse, obviously has tremendous experience in the area. She talked about the safeguards in the bill, the pre-death procedures and the need to raise awareness. I am glad that the minister introduced an amendment on that. I congratulate the Government on the work that it has done through the “We need everybody” campaign.
Lewis Macdonald talked about the opportunity to launch the organ donation campaign afresh. Of course, we should never compromise families’ rights, but we need to widen the pool of organ donation. He said that awareness raising needs to be highlighted, as has been done through amendments to the bill, and he pointed out that the amended legislation will be reviewed.
The stakes are high, so we need the legislation to be a success. More than one in 10 people on the waiting list will die before they get the transplant that they need. As BMA Scotland has suggested, the bill will change the culture and philosophy in society, so that donation becomes the norm. We need to aim for societal change so that organ donation becomes accepted and is part of the fabric of our national life. The greatest gift that a person can ever give is the gift of life itself.16:47
I am delighted to close the stage 3 debate on behalf of the Conservative Party. Given the topic, the debate has been consensual. As has been said, the bill’s swift passage is testament to the work that was done previously by Anne McTaggart and Mark Griffin, who is in the chamber today.
Many members, including the minister, have highlighted the incredible work that specialist nurses do in dealing with bereaved families in their time of grief. That also became clear during the Health and Sport Committee’s investigation. I know that my fellow committee members were moved by the demonstration of a conversation between nurses and a deceased person’s next of kin. As Alex Cole-Hamilton alluded to, we were all surprised by the number of questions that are asked. It is certainly a lot of questions to tackle at a time of grief, but the delicate and empathetic way in which the nurses deal with organ donation with bereaved families is testament to their skill and dedication. I know that we all want to give them our thanks.
During the passage of the bill through its committee stages, although not many people spoke against it, there was much discussion and debate about the nuances and the potential implications. Far be it from me normally to praise Keith Brown in any way, but I think that I might do so now, to see whether I can ruin his reputation. I was taken by how he consistently pressed for the rights of the donor and said that their wishes should be paramount. However, there is a need for next of kin to answer the complex questions about the deceased prior to donation, and there will always be the final veto for the family. Mike Rumbles spoke about that issue, too. I am not sure that there is any way round it, but Keith Brown certainly got committee members to think about the issue in depth. No healthcare professional will go against the wishes of a family, irrespective of the donor’s wishes, either expressed or presumed.
As has been said, nine out of the 10 top countries in terms of transplant have a form of opt-out system. However, implementation of an opt-out system will not of itself necessarily increase the number of donors. David Stewart, among others, mentioned Spain, where every hospital has capacity for and expertise in organ transplant. What plans does the Scottish Government have to ensure that increased organ donation here will be matched by an increase in capacity? In these days of multiple shortages in staff across many disciplines in the NHS, is the Scottish Government confident that it can recruit the requisite specialist nurses in our hospitals and ensure that they are equipped with the necessary acute specialist facilities? I join David Stewart in asking the minister to address that in his closing remarks.
I have also spoken about my reservation that having the bill deal with both presumed and expressed consent could lead to confusion. Scotland has the highest level of card-carrying donors in the UK, but it also has the highest level of families overruling donors’ wishes. As Alison Johnstone, David Stewart and Miles Briggs highlighted, 40 per cent of the population would donate, but have not yet expressed their consent. Until recently, I was one of them. Only when I had to change the address on my driving licence online was I prompted to express my consent, which took little more than a minute. I advocate there being more opportunities for people to express their consent because, to my mind, that is a much more powerful declaration of intent than any presumption.
However, the bill offers the opportunity to bring the topic to the nation’s attention. This morning, I caught part of a BBC Radio Scotland discussion on it, so mentioning the proposed change in the law does work. That in itself must be a good thing. As Kenny Gibson said, instigation of a conversation in families about how their thoughts and wishes might be expressed has to be positive.
In supporting the bill, the Scottish Conservatives ask the Scottish Government to run a consistent marketing campaign alongside implementation, in order to ensure maximum understanding of the idea of expressed consent. Finally, we also ask that an audit of the current number of intensive care beds and specialist staff be undertaken, and that a plan be put in place for the increase in donors that might result from the legislation.
Donation of organs is an incredible legacy to leave. The passing of the Human Tissue (Authorisation) (Scotland) Bill will mean the culmination of many years of work by campaigners. Let us hope that, if it is passed, it will have the impact that we all believe it can have.
I call Joe FitzPatrick to wind up the debate. You have six minutes, minister.15:52
I thank members for what has been a good debate on a very complex and sensitive subject. I especially thank members from across the chamber for reading out the names and statements of people who have benefited from organ transplant. It is so important that we hear such stories, and I hope to have time to talk about some that I have heard and the people whom I have met.
Of course, organ donation can be a very personal issue. Although there are differences in our views on moving to an opt-out system, I am sure that we would all agree that it is important that we do all that we can to support initiatives that aim to increase donation. Moving to such a system, which the bill provides for, will add to the initiatives that have been driving improvements over the past decade, leading to the progress that I spoke of earlier. I hope that that change will contribute further to on-going positive developments. Those are underpinned by a commitment from the Scottish Government to support and promote donation, but they have been driven forward by those who work in the system. I put on record my thanks and admiration for their dedication.
In overseeing progress, the Scottish donation and transplant group has played a key role in ensuring that opportunities to improve donation and transplantation are maximised. The group has also provided valuable insight on the bill to ensure that it provides for a system that will work in practice. I am grateful for that input and know that the group will continue to play an important role as the new system is implemented and monitored.
Miles Briggs, David Stewart and Brian Whittle asked about infrastructure and capacity. The Scottish Government has an on-going commitment to ensure that the infrastructure supports donation, that performance is continuously monitored and that potential improvements are considered via the Scottish donation and transplant group. The group oversees the delivery of the current plan for donation and transplantation for Scotland, which runs from 2013 to 2020. As part of the plan to increase organ and tissue donation and transplantation in Scotland from 2020 onwards, we will discuss with stakeholders whether further initiatives should be progressed to improve infrastructure for organ and tissue donation in the future, which is an important issue.
David Stewart raised the issue of human rights legislation. I assure members that we have worked with people who work in organ donation and transplantation to ensure that we have a system that will work in practice and which clearly takes account of a person’s rights, particularly under the European convention on human rights. Mr Stewart mentioned the Montgomery case. The bill is in line with that decision, although that case was more concerned with medical treatment, whereas the bill is about authorisation of donation.
Will the minister take an intervention?
I want to cover another point that David Stewart raised. He asked specifically about the Latvian case of Elberte. The outcome of that case turned on its particular facts and circumstances, with the issue being the quality of Latvian organ donation legislation. That legislation gave family members a right to object to donation, but provided no mechanism for the right to be given effect in practice. The judgment does not suggest that a right to be consulted is a necessary feature of an opt-out system; it simply illustrates that if a right is provided for, it must be capable of being exercised. That was where the Latvian law fell short.
Will the minister take an intervention now?
Very briefly; I have lots of other points to cover.
I am grateful. In raising the 2015 case of Elberte v Latvia, my point was that a breach of article 8 of the European convention on human rights was proved. If we have a five-year review, it will be the courts that decide whether there is a breach. Does the minister agree that, in the long term, that is the best way to human rights-proof the bill?
Could members quieten down, please?
David Stewart is absolutely right. From looking at the case law, particularly the Elberte case, we are content that the bill is solid in that area, but he is right that the five-year review allows that further examination.
Alison Johnstone asked about the very important issues of staff training, education and awareness. Training for people involved in the donation and transplantation process will be a crucial part of the successful implementation of the new system.
Alex Cole-Hamilton asked about psychological support for patients and donor families—a point that he has raised before. NHS National Services Scotland is responsible for commissioning all psychological support in the pre-transplant and immediate post-transplant phase, and it is currently reviewing the provision of psychological support across all nationally commissioned specialist services, including organ transplantation, to ensure that appropriate provision is in place. We understand that the review will be completed later this year.
Mr Cole-Hamilton also mentioned support for families. We recognise the selfless decisions that donor families have made. Specialist nurses direct families to bereavement services, where appropriate. However, it is important to note that, for many donor families, donation is seen as a positive outcome from a tragic situation. It is a legacy for their loved ones and can be a valuable part of their bereavement journey.
Kenneth Gibson mentioned a range of other work that is improving donation, and he was absolutely right to do so. I have made it clear that the opt-out will deliver the increases in donation that we all want to see only if it is part of a package of measures. He also talked about the frank conversations that people should have with their loved ones. Having those discussions about donation will make it so much easier for families to make the decision comfortably and to have those conversations with the specialist nurses, should someone die in tragic circumstances that mean that their organs could save a life. A message from today’s debate is that I encourage everyone to have those conversations and speak to their family about their wishes.
Christine Grahame talked about consent versus authorisation. Lewis Macdonald answered that point when he talked about how the wording in the bill relates back to 2006.
I go back to why we are doing this. This morning, I was at the Royal infirmary of Edinburgh, where I saw at first hand the difference that donation can make when I met two organ recipients, Jamie and Clare. They spoke of the life-changing gift that they had received and the difference that it had made to their lives.
Of her transplant, Clare said:
“Waking up, I was like a different person. It is impossible to explain. Even though there have been some ups and downs with my recovery, my life is better than I could have expected.”
Jamie was equally grateful. He said:
“It’s an amazing gift; it’s the gift of life. I will never be able to meet the person who did this for me and I am not sure I’d know what to say to them if I did. It’s so completely changed my life.”
We need to remember that that is why we are doing this. I am so proud to commend the bill to members in the chamber today. Like the 2006 act, it will provide the basis for further progress.