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Human Tissue (Authorisation) (Scotland) Bill

Overview

This Bill proposes to change the system for organ and tissue donation in Scotland. 

Currently, donations can be taken if:

  • the person has authorised this before they die, or
  • their nearest relative authorises the donation after they die 

This is known as an ‘opt-in’ system.  

The Bill proposes a new category of ‘deemed authorisation’. This is also known as ‘presumed consent’.

This means when someone dies without having made their wishes known, it’d be assumed they’d agree to donate their organs. Unless family members have evidence that it would be against their dead relative's wishes, they can’t override the donation.

This proposed system is known as a ‘soft opt-out’.

It would not apply to people:

  • under 16
  • without the capacity to understand ‘deemed authorisation’
  • who have been living in Scotland for less than 12 months

The main aim of the Bill is to increase the organ donation rates and the number of transplants carried out.

You can find out more in the Explanatory Notes document that explains the bill.

Why the Bill was created

Between 40 and 60 people will die each year while waiting for a transplant.

Opinion polls tend to show most people are in favour of having to opt-out. The move to an opt-out system got 82% support from respondents in a public consultation in 2017.

Part of the logic of the Bill is that by presuming consent, there will be fewer times that the family would need to consent to donation. This would limit the potential for refusals and so increase donations.

Around 40% of families do not agree to donate their loved one’s organs. This means the loss of around 100 potential donors each year.

Reasons for lack of transplants

Organ donation and transplant rates have been increasing over the last 10 years. But there are still over 500 people waiting for a transplant in Scotland at any one time. 

Transplants are made harder because less than 1% of people die in circumstances that allow organ donation to proceed. 

You can find out more in the Policy Memorandum document that explains the bill.

The Bill at different stages

'Bills' are proposed laws. Members of the Scottish Parliament (MSPs) discuss them to decide if they should become law.

Here are the different versions of the Bill:

The Bill as introduced

Human Tissue (Authorisation)(Scotland) Bill as introduced

The Scottish Government sends the Bill and the related documents to the Scottish Parliament.

Bill is at ScottishParliament.SC.Feature.BillComponents.Models.BillStageModel?.DefaultBillStage?.Stage_Name stage.

Stage 2 – Changes to detail

Human Tissue (Authorisation)(Scotland) Bill with Stage 2 changes

Second version of the proposed law with changes from Members of Scottish Parliament (MSPs).

Bill is at ScottishParliament.SC.Feature.BillComponents.Models.BillStageModel?.DefaultBillStage?.Stage_Name stage.

Stage 3 – Final changes and vote

Human Tissue (Authorisation)(Scotland) Bill as passed

Third version of the proposed law that the MSPs voted on and passed.

Bill is at ScottishParliament.SC.Feature.BillComponents.Models.BillStageModel?.DefaultBillStage?.Stage_Name stage.

Where do laws come from?

The Scottish Parliament can make decisions about many things like:

  • agriculture and fisheries
  • education and training
  • environment
  • health and social services
  • housing
  • justice and policing
  • local government
  • some aspects of tax and social security

These are 'devolved matters'.

Laws that are decided by the Scottish Parliament come from:

Government Bills

These are Bills that have been introduced by the Scottish Government. They are sometimes called 'Executive Bills'.

Most of the laws that the Scottish Parliament looks at are Government Bills.

Hybrid Bills

These Bills are suggested by the Scottish Government.

As well as having an impact on a general law, they could also have an impact on organisations' or the public's private interests.

The first Hybrid Bill was the Forth Crossing Bill.

Members' Bill

These are Bills suggested by MSPs. Every MSP can try to get 2 laws passed in the time between elections. This 5-year period is called a 'parliamentary session'.

To do this, they need other MSPs from different political parties to support their Bills.

Committee Bills

These are Bills suggested by a group of MSPs called a committee.

These are Public Bills because they will change general law.

Private Bills

These are Bills suggested by a person, group or company. They usually:

  • add to an existing law
  • change an existing law

A committee would be created to work on a Private Bill.

Becomes Law

The Human Tissue (Authorisation) (Scotland) Bill passed by a vote of 116 for, 3 against, 2 abstentions. The Bill became law on 18 July 2019.

Introduced

The Scottish Government sends the Bill and related documents to the Parliament.

Human Tissue (Authorisation) (Scotland) Bill as introduced

Related information from the Scottish Government on the Bill

Scottish Parliament research on the Bill 

Stage 1 - General principles

Committees examine the Bill. Then MSPs vote on whether it should continue to Stage 2.

Have your say

The deadline for sharing your views on this Bill has passed. Read the views that were given.

Committees involved in this Bill

Who examined the Bill

Each Bill is examined by a 'lead committee'. This is the committee that has the subject of the Bill in its remit.

It looks at everything to do with the Bill.

Other committees may look at certain parts of the Bill if it covers subjects they deal with.

Who spoke to the lead committee about the Bill

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First meeting transcript

6 November 2018

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Second meeting transcript

13 November 2018

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Third meeting transcript

20 November 2018 

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Fourth meeting transcript

27 November 2018

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6 November 2018

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13 November 2018

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20 November 2018 

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27 November 2018

Committee Findings

What is secondary legislation?

Secondary legislation is sometimes called 'subordinate' or 'delegated' legislation. It can be used to:

  • bring a section or sections of a law that’s already been passed, into force
  • give details of how a law will be applied
  • make changes to the law without a new Act having to be passed

An Act is a Bill that’s been approved by Parliament and given Royal Assent (formally approved).

Debate on the Bill

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Stage 1 debate transcript

The Deputy Presiding Officer (Christine Grahame)

The next item of business is a debate on motion S5M-16001, in the name of Joe FitzPatrick, on the Human Tissue (Authorisation) (Scotland) Bill at stage 1.

14:58  



The Minister for Public Health, Sport and Wellbeing (Joe FitzPatrick)

I am pleased to open the debate on the Human Tissue (Authorisation) (Scotland) Bill. Before discussing specific elements of the bill, I will talk about the bigger picture, which it is always important to remind ourselves of when talking about organ and tissue donation and transplantation.

The transplantation of donated organs and tissue is one of the most incredible developments in modern healthcare. It reflects the best of humanity, as people respond to acute need with incredible generosity, and it is a testament to the wonders of the national health service, to the skills of our nurses, clinicians and surgeons and to the organised efforts of everyone who works to make these life-changing gifts possible.

Scotland has seen tremendous progress over the past decade. Following our work to build and strengthen the system, and as a result of the incredible generosity of donors and families, the number of donors has significantly increased, as has the number of organ and tissue transplants. Those transplants have saved and improved lives. They have allowed people to live fuller lives, to be less dependent on hospital visits and healthcare, to get back to work and to contribute to society.

For the transplant recipient, the gift that they receive represents an opportunity to start life anew. However, not everyone receives the organs or tissue that they need. Although many lives have been saved and improved over the past decade as a result of the hard work that has been done to build the necessary infrastructure, too many people are still waiting for the organ transplant that could save their lives. More than 500 people in Scotland are waiting for an organ transplant at any one time. Those people want to live their lives to the full; they want to work, contribute and support their families. It is my job—it is our job—to make sure that we are doing all that we can to get as many of those people as possible the transplant that they need.

There will always be an absolute limit on the number of people who can become donors. Only about 1 per cent of people die in circumstances in which donation is possible, but if there are steps that we can take to allow more of that 1 per cent to donate, I hope that members will agree that it is important that we do so.

The primary purpose of the Human Tissue (Authorisation) (Scotland) Bill is to introduce a soft opt-out system of organ and tissue donation for deceased donors. The bill would amend the existing Scottish legislation that supports donation—the Human Tissue (Scotland) Act 2006—by introducing a new additional form of authorisation called “deemed authorisation”. In practice that means that, if a person was not known to have any objection to donation, donation may proceed.

Deemed authorisation would apply to most adults from the age of 16 who have not otherwise explicitly opted in or opted out of donation. However, the bill contains safeguards to ensure that donation will not proceed if that is not what the person would have wanted. The bill also provides safeguards for those adults who lack the capacity to understand deemed authorisation and for adults who are resident in Scotland for fewer than 12 months—neither will be subject to deemed authorisation.

Evidence suggests that there is no one answer to increasing organ and tissue donation; there is no magic bullet. However, there is evidence that opt-out systems can make a difference as part of a package of measures. Scotland has already made many improvements. With our partners in the national health service, work has progressed over the past 10 years to improve the infrastructure and systems that support donation. That includes learning from other countries such as Spain, and responding to major reviews such as “Organs for Transplants: A report from the Organ Donation Taskforce” from 2008.

David Stewart (Highlands and Islands) (Lab)

The minister rightly identifies Spain—it is top of the league table for organ donation. He will know that its success has been because of the high level of intensive care beds rather than to do with issues of consent. Will the minister respond to that point?

Joe FitzPatrick

We should learn lessons from across the world about how we can adapt our system, but we have to recognise that there are differences in systems and we need to be mindful of differences in culture and approaches. I am pleased that the Health and Sport Committee in its review of evidence agrees and specifically makes that point regarding the differences between the Spanish and United Kingdom systems.

Improvements have also been realised through “A donation and transplantation plan for Scotland 2013-2020: More donors, more transplants, more lives saved”. That includes the appointment of a Scottish regional manager for specialist nurses for organ donation and the publication of an education pack for secondary schools, which has contributed to the highest awareness among young people.

Work continues. For example, we have recently confirmed to NHS Blood and Transplant that we will provide funding to support new technology to improve the outcomes for patients receiving liver transplants and increase the proportion of livers that are suitable for transplantation.

A duty on ministers in the Human Tissue (Scotland) Act 2006 to promote donation through regular publicity and awareness raising has resulted in Scotland having 52 per cent of its population on the NHS organ donor register, which is the highest proportion of any of the UK countries.

As support for and awareness of organ donation have grown in recent years, so has interest in a move to opt out. Anne McTaggart’s member’s bill—the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill—which was introduced in the previous session, was significant in that regard. Although the approach in that bill was not supported by the Parliament or Government, both recognised the appetite to move towards a different form of authorisation. The Human Tissue (Authorisation) (Scotland) Bill is the product of that appetite, and of the great deal of work that we have undertaken over the past few years following those discussions.

We have worked with a lot of people, including NHS professionals and people affected by donation and transplantation, to consider how best to introduce a system of opt-out in a way that will contain appropriate safeguards and in a way that will not compromise the already complex and lengthy donation pathway.

We place particular importance on making these changes in a way that is transparent and open to the public. Organ and tissue donation enjoys and depends on a high degree of public support, and we do not want to do anything that puts that support at risk.

The bill sets out a framework for pre-death procedures—that is, medical procedures that may be carried out for the purposes of transplantation. The medical procedures that we are talking about here include, for example, blood tests or the collection of urine samples to help ensure that donated organs are more likely to be transplanted successfully, and that a donor’s wishes can be fulfilled.

The bill also sets out that the authorisation for some procedures can be deemed in certain circumstances. I am pleased that the committee accepts the proposals in the bill, but I recognise that this is a complex area. I want to reassure members that that sort of clinical practice is not new, and it is already an important part of the donation and transplantation pathway. We recognise that clinical procedures will continue to change. We want to ensure that there is in place a clear framework that will set out how and when pre-death procedures can be used, and what safeguards must be in place to ensure that future developments in clinical practice can be introduced where appropriate. We agree with the committee that the use of such procedures should be kept under review.

The bill provides that the procedures and proposed changes to them will require consultation to be carried out with the appropriate clinical bodies and will also require scrutiny on the part of the Parliament. As with provisions around opt-out, our approach is to be transparent and to maintain a high degree of trust in donation.

The bill includes a new duty to inquire. In practice, that will ensure that the NHS understands the wishes of the donor before further steps are taken. The aim of the bill is to ensure that the interests and the views of the donor are safeguarded at all times, but also that there is a clear and effective mechanism in place for relatives and other entitled people to provide information to exercise their rights.

To meet those aims while reflecting current good practice, the bill includes a duty to make inquiries in respect of authorisation given by the donor or whether an opt-out decision is in place. For example, the specialist nurse for organ donation or the tissue donor co-ordinator will undertake a check of the information that is held on the organ donor register. Inquiries will also be made of the nearest relative or other person to find out the most recent views of the donor, or whether the donor falls within an excepted category.

To be clear, as with the law as it currently stands, families do not have a right to overrule the wishes of a loved one. However, they have an important role to play in relation to providing information on whether the donor had expressed any wish, or whether they had changed their mind.

Mike Rumbles (North East Scotland) (LD)

The bill would change the law as it stands. At the moment, the legislation says that the relative can provide knowledge of the intended wishes of the donor, but the bill says that the relative has to provide evidence to a health worker that would convince a reasonable person. That is quite a different level of bar that the relative has to jump over.

Joe FitzPatrick

The standard of evidence in respect of the donor’s view was given a great deal of consideration during the development of the bill. The view of those working in the system was that requiring written evidence was impractical, as it is almost never provided. That is why, although the consultation referred to written evidence, the bill does not. The discussions take place with families and things are rarely written down. I think that we have got the appropriate level of evidence that is required.

Maurice Corry (West Scotland) (Con)

We talk about families being consulted, but has consideration been given to powers of attorney and deputies of the court of protection?

Joe FitzPatrick

The aim is to ensure that we are identifying the views of the potential donor. In many cases, that will require consultation with the family, but in other cases, it will require consultation with someone else. That is part of the process as it stands just now. The specialist nurses ensure that they are speaking to the most appropriate person to identify the wishes of the donor. That is our aim, and it is a crucial part of the legislation.

Good public awareness will be crucial to achieving the aim of increasing support for donation. The bill builds on the provisions in the 2006 act for ministers to support and raise awareness of donation by introducing a requirement to raise awareness of the new authorisation processes that it introduces. We need to ensure that members of the public are aware of the opt-out system, are able to exercise their choice to opt out of donation, and are encouraged to tell their families.

In addition to the duties in the 2006 act and those in the bill, the Scottish Government is committed to a high-profile awareness-raising campaign during the 12-month lead-up to the introduction of the opt-out system. Awareness activity will be designed to reach a wide range of people, including hard-to-reach groups, minority groups and people with specific needs. We recognise the importance of raising awareness among young people as they approach the age of 16, so that they are aware of the implications for them. We are exploring ways of achieving that.

A great deal of work has gone into developing the bill over the past 18 months. I am grateful for the expertise, dedication and experience of the NHS clinicians, professional organisations and individuals who helped to shape the bill. I particularly acknowledge the Scottish donation and transplant group, which advises Government on these matters.

Our long-term aim is to increase donation and transplantation rates. I hope that this bill will contribute to that. I welcome the committee’s support for the general principles of the bill and I thank committee members for their thorough and constructive consideration at stage 1.

I move,

That the Parliament agrees to the general principles of the Human Tissue (Authorisation) (Scotland) Bill.

The Deputy Presiding Officer

I call Lewis Macdonald, convener of the Health and Sport Committee.

15:11  



Lewis Macdonald (North East Scotland) (Lab)

Lung transplant recipient Gillian Hollis gave the Health and Sport Committee a neat summary of the general principles of the Human Tissue (Authorisation) (Scotland) Bill:

“Tell us if you want to donate, tell us if you don’t want to donate, and if you don’t tell us anything we’ll presume you have authorised donation.”

She was one of several people with direct personal experience from whom we heard, formally or informally, and who helped to shape the committee’s report at stage 1 of the bill. I thank everyone who assisted with our scrutiny by responding to our call for views or our survey or by giving oral evidence, and I particularly thank those who, like Gillian Hollis, gave evidence from their own experience, including people who have benefited from donated organs, patients who are still waiting for a transplant and relatives who have authorised the donation of an organ from a deceased family member.

I also thank the clerks to the committee and the Parliament’s external engagement and media teams.

As is the case with the current law on organ donation, the Human Tissue (Scotland) Act 2006, the bill’s fundamental purpose is to enable an increase in rates of organ donation to save lives.

The evidence that we heard at stage 1 was that donation rates have benefited from the changes to law and practice that followed the 2006 act, but have not yet ended the tragedy of people dying while on the waiting list for an organ transplant. Despite all the good work that has been done since 2006, more than 500 people are waiting for a transplant at any one time and there are not enough organ donations to enable them all to survive.

The 2006 act boosted donor rates in Scotland to the highest in the UK, as the minister said, although we are now being challenged by Wales, since the passing of the Human Transplantation (Wales) Act 2013.

In Scotland, about half the population has opted in. However, that is not enough. We know from survey work that 90 per cent of Scots say that they would like their organs to be available for transplantation after death. That means that up to 2 million people in Scotland would like to be organ donors but have not registered their wishes.

The bill deems those who have expressed no view on the matter to be potential donors, thereby bringing the share of the population who can donate closer to the proportion of the population who want to do so. Of course, as Joe FitzPatrick said in his speech, in practice, transplantation is appropriate in only 1 per cent of deaths.

People need to be able to make an informed choice about opting in or out, and they must understand the implications of deemed authorisation. The language around organ donation can be confusing, so we also need a robust and continual engagement strategy, to explain what it all means.

The committee was keen to learn from the experience of other countries. The legislation passed in Wales in 2013 introduced a system of deemed authorisation similar to that proposed here. Evaluation of the impact of the Welsh act confirmed that the new law did not at first lead to a major increase in donor rates but that that has begun to happen in the past year or so. The evidence is that increasing donation follows increasing awareness, not simply a change in the law alone.

Likewise, as we have heard, the evidence from Spain did not prove a direct link between an opt-out system of deemed authorisation and an increase in transplantation rates. As David Stewart pointed out, high numbers of intensive care beds have been at least as important to the high organ donation rates in Spain, as has the high number of hospitals able to retrieve organs.

When we asked the minister to review the issue of intensive care beds, he indicated that the 2020 strategic forecast did not anticipate an increase in donation rates above existing capacity as a result of the bill. We therefore recommended a review of infrastructure across the country for organ donation, and I very much welcome the minister’s commitment today to discuss with stakeholders whether further improvements can be made.

The committee’s online survey on the bill attracted 747 responses. The most widely-held concerns related to the rights of the individual who has not expressed a view but whose body could, some felt, be treated as if in some way it belonged to the state. While recognising the ethical and legal issues raised, the committee accepted the minister’s view that, in the final analysis,

“the right to authorisation rests with the ... donor”—[Official Report, Health and Sport Committee, 27 November 2018; c 24.]

and, by the same token, so does the right to withhold consent.

The idea that deemed authorisation could undermine the sense of a gift from donor to recipient was also highlighted in our survey. Patients awaiting transplant, on the other hand, were insistent that any organ would be welcome as a gift, whether it was enabled by registration as a donor or by deemed authorisation. It would be useful for the Scottish Government to revisit that after a period to see whether there is any change in public attitudes and any impact on donor rates. Mr FitzPatrick has indicated that that is his intention. We also want a review after a similar period—perhaps five years—of medical procedures prior to death to help successful transplantation. The minister mentioned that, too. It is critical to ensure that such procedures are being conducted with the necessary sensitivity.

The committee had a valuable session with specialist nurses in organ donation—SNODs—who showed us how they work with the families of potential donors. It became clear that families have a dual role in providing the essential medical and social history of the prospective donor, and in enabling donation to go ahead. We were struck by the many and sometimes difficult questions that SNODs have to ask at what is already a distressing time. Those questions are standardised across the UK in order to maximise the opportunities for donations and transplants between jurisdictions. We suggested that this would be a good time to review those questions, to ensure that every question continues to be of clinical importance. We welcome the minister’s commitment to take that forward.

The law already says that the wishes of the donor are paramount, not the views of family members, but, as we heard from Dr Stephen Cole, consultant in intensive care medicine at Ninewells hospital, doctors

“would find it difficult ... to override the wishes ... expressed by ... patients’ relatives.”—[Official Report, Health and Sport Committee, 13 November 2018; c 27.]

We accept that, in practical terms, it would not be possible for the medical profession to proceed with donation against the wishes of the family. The role of SNODs in working with families is therefore critical.

We heard from patients on the transplant waiting list who told us about the emotional and financial distress caused by waiting for an organ to become available. Even when an organ is found, 40 per cent of transplants do not proceed for a variety of reasons, which is tough for those on waiting lists, whose hopes can be dashed time and again.

Specialist post-transplant support is provided to recipients of blood stem cell or bone marrow donations, and we see no reason for any difference in approach. We welcome the Government’s assurance that psychological support across all those services is under review, including for people affected by organ donation. Having had that assurance from the minister, we look forward to the findings of that review later this year.

For the bill to achieve its aim of increasing donation rates, a high-profile public information campaign is required, running for at least 12 months before commencement of the new rules. We are pleased that the Government has accepted our recommendation that it reviews the engagement strategy in Wales and undertakes outreach sessions with ethnic minority groups. We also welcome its commitment to build on the existing collaboration between the Scottish Fire and Rescue Service and the Anthony Nolan charity, which work together to promote awareness of stem cell donation in secondary schools and colleges.

The committee supports the general principles of the bill, but we stress that the bill alone will not achieve the desired effect. Scotland, like Wales, must use the change in the law as a vehicle for promoting greater awareness of the benefits and requirements of organ donation. Ministers must therefore ensure that the necessary infrastructure is in place in good time to support the increased number of transplants that we all want to see in Scotland in the 2020s.

15:20  



Miles Briggs (Lothian) (Con)

When I attended university in Aberdeen, all the students in the granite city became aware of and concerned about our fellow student Millie Forbes. Millie needed a vital bone marrow or stem cell transplant, and significant work to find a donor had led to no suitable match.

As I was a young man who had just escaped rural Perthshire for the city life of Aberdeen, registering for any donation list was the last thing on my mind. However, it was the need to do something and wanting to help that made so many of the student population in Aberdeen sign up en masse to the Anthony Nolan register and donate blood stem cells in the hope of providing the match that Millie needed.

Millie sadly lost her fight aged just 21, surrounded by members of her family at the ANCHOR unit at Aberdeen royal infirmary in 2004, eight months after she had successfully undergone a stem cell transplant operation—her only real hope of survival against acute myeloid leukaemia. Millie was a real inspiration, and it is remarkable to see, 15 years after she lost her life to leukaemia, how Millie’s campaign has brought fresh hope and has saved the lives of others with leukaemia across Britain since then.

That experience made me think about these issues and decide, during my time at university, to sign up to the Anthony Nolan register and the organ donation register. Sadly, for many of our fellow Scots, taking that step or even having a conversation about it with loved ones is just not happening, which is why so many people’s wishes on organ donation are simply not registered or not known by family members. The situation clearly needs to be improved. In Wales, the most recent figures since it changed its organ donation legislation show that, from November 2018, the rate of family consent is now at its highest-ever level of 80 per cent compared with 63 per cent in Scotland, 66 per cent in England and 66.7 per cent in Northern Ireland.

I thank all the organisations and groups that have provided briefings ahead of the debate, and I thank them for their contribution to the work of the Health and Sport Committee. I also put on record my thanks to the committee team for their work during the inquiry, and I recognise the work that was done by Mark Griffin in introducing his member’s bill on the issue.

In the time that I have, I will touch on some of the important aspects of the bill that we need to get right as it progresses through Parliament. The wishes of the donor’s family have already been mentioned, and we need to make sure that those are at the heart of the bill. Throughout our inquiry, it was clear that the role of the donor’s family is fundamental to the success of any donation and will be central to the success of the bill.

Keith Brown (Clackmannanshire and Dunblane) (SNP)

Is it the member’s view that the wishes of the donor’s family should supersede those of the donor?

Miles Briggs

The committee found that issue difficult, specifically in the context of what happens if someone is not known to have expressed a wish. The family already have the opportunity not to go ahead with the questionnaire, and the questionnaire is staying as part of the bill. So, in theory, that will still be the case if they are not willing to go ahead with the donation questionnaire. I know that the SNOD team has always found that issue difficult.

During our inquiry, when Keith Brown was still a member of the Health and Sport Committee, the work that we did with the specialist nurse in organ donation team was very important. Listening to examples of the conversations that the team facilitates with families at the most distressing time any of us can imagine showed how incredibly professional they are and demonstrated our national health service at its best. The professionalism of the SNOD team is critical as they provide sensitive assistance and support to the families of potential donors, and the openness and transparency of those conversations is vital to the process. I pay tribute to their work in supporting families at times of unimaginable distress while highlighting the benefits of organ donation and keeping them informed after the process.

It was clear that organ donors’ families have always been and will always be at the heart of facilitating donor selection through the questionnaire process and in implementing donors’ wishes. As Lewis Macdonald has highlighted, that was demonstrated by the conversations that the committee had with families, and I thank those who generously gave their time to the work of the committee. I am sure that I speak for all members when I say that we learned much from them.

The decisions of families who had decided not to go ahead with donation were understandable, though. I hope that we have been able to make improvements for the future regarding the factors that they outlined as having influenced their decision making at the time and in the organ donation system and such families’ experience of it. Refusal by families accounts for 50 per cent of non-donations. In countries that have adopted opt-out systems, that figure has reduced to an average of around 25 per cent. Clearly, much work remains to be done to improve family consent rates, but I believe that the work that the committee has done on the bill can help to do that.

I do not have time to highlight the amazing work of the Family Donor Network and other organisations such as Transplant Sport, which runs the British transplant games, but I thank them. As has been mentioned, infrastructure is another issue that has been raised with the committee, and I believe that we need to see a significant commitment from ministers on it. As David Stewart outlined, intensive care beds are a key area that the committee highlighted. It is clear that, if the bill is to achieve the outcome of increasing organ donation, we will need to see progress on improving the infrastructure for transplantation. I welcome the minister’s response to the committee, but it is important that we have further clarity on what will be done to address capacity issues in order to support the aims of the bill in the future, especially on staffing and intensive care beds.

The useful briefing that the Royal College of Physicians of Edinburgh provided ahead of the debate makes some key recommendations and points that will be important for us to examine as we progress to stage 2.

I hope that the bill will help us to achieve a celebration of organ donation. We need to change the culture in Scotland to recognise organ donation publicly and to celebrate it more. We must see the life-saving and life-changing difference that donors and their families make—in the majority of cases for total strangers. Giving the gift of life is incredible. The committee’s report recommends that a communication programme be established. If the bill passes stage 1, we must ensure that such a public information campaign is one of the best and most innovative that the Scottish Government has undertaken.

Scottish Conservatives welcome the introduction of the Human Tissue (Authorisation) (Scotland) Bill and today’s debate as the Parliament moves forward on this important issue. We believe that all options should be considered in order to increase organ donation. Therefore, if the bill passes stage 1, we will engage in the legislative process before the final vote at stage 3.

The SNP Government must ensure that comprehensive information and the infrastructure that we will need are in place so that, in the future, donors and families will be fully informed and it will be possible for organs that are donated to be transplanted successfully.

Every day, someone in the UK dies while waiting for an organ transplant. I believe that, here, we have the opportunity to change that.

The Deputy Presiding Officer

I call Monica Lennon to open the debate on behalf of Labour.

15:28  



Monica Lennon (Central Scotland) (Lab)

I am pleased to speak in the debate on the Human Tissue (Authorisation) (Scotland) Bill at stage 1. Like other members, I thank the Health and Sport Committee for its diligent work and its report, which was ably summarised by the committee’s convener, Lewis Macdonald, a few minutes ago. I am also grateful to the British Heart Foundation, the Royal College of Physicians of Edinburgh, the Royal College of Nursing Scotland, Anthony Nolan and Kidney Care UK for the briefings that they provided ahead of the debate.

Scottish Labour supports the general principles of the bill, including its overarching aim of increasing the organ and tissue donation rate and, consequently, the number of transplants that can be carried out. We have long supported a soft opt-out system. I thank my colleague Mark Griffin for influencing the agenda on the subject through his member’s bill of 2016 and Anne McTaggart for her work prior to that on her member’s bill of 2015. I look forward to hearing from Mr Griffin and other colleagues this afternoon.

At any one time, 500 people are on the organ transplant list in Scotland, and, each year, up to 60 people die while they are on that list, so there is certainly a need to increase the number of donated organs. That is why I am pleased that there is public support for a soft opt-out system, as was demonstrated in the Scottish Government’s consultation and the committee’s survey.

That said, we are all alive to some of the concerns that have been raised about the move to a soft opt-out system. Some people expressed a worry that people will have organs removed against their wishes, so it is important to highlight that people will still be able to opt in and opt out of the system, as we have always been able to do. For people who have not declared, consent will be presumed, but there will be safeguards in place. For example, the next of kin will be able to provide information if donation was against their family member’s wishes.

Mike Rumbles

As I said to the minister, that is the law as it stands, under the Human Tissue (Scotland) Act 2006, which refers to “knowledge” of the deceased person’s intent. However, section 7 of the bill says that the family must provide

“evidence to a health worker that would convince a reasonable person”.

That requirement to provide evidence is quite different and is a step change in legal terms.

Monica Lennon

I have been reassured by the committee’s scrutiny and by the Government that there are appropriate and robust safeguards. I will come on to talk about the public education aspect, which is important.

Fundamentally, it is crucial that we get these things right, because people who are on the transplant waiting list urgently need help. Organ transplants save lives and can make a transformational change to people’s quality of life. For example, Kidney Care UK describes dialysis as distressing, extremely painful and hugely disruptive to daily life, with five-hour dialysis sessions three times a week, which is challenging for people in rural areas, as I am sure Mike Rumbles knows. A kidney transplant can give a person their life back.

The committee heard that the wait for a transplant can be a lonely experience and can take a huge toll on people’s mental health. There can be an anxious wait for a suitable organ to be found and disappointment when delays and complications arise, which can happen even on the day of surgery. A return to the transplant waiting list can be a source of disappointment and anxiety. I recognise the committee’s recommendation that, where possible, we need to improve the experience of people on the waiting list by, for example, having specialists provide support.

It is crucial that the bill be backed by clear and consistent messaging throughout Scotland so that people understand the system, and in order to spark conversations about organ donation. The British Medical Association has said that, although half of the population have opted in to organ donation, its experience is that, when asked, nine out of 10 people say that they would donate their organs. Deemed consent will help to close that gap.

I hope that we can all agree that a person who is desperately waiting for an organ transplant, which could be the difference between life and death, should not miss out simply because many of us never got round to opting in to be an organ donor. The committee’s convener touched briefly on the work of Anthony Nolan with the Scottish Fire and Rescue Service, which is an excellent partnership that works with young people in our schools. Since 2009, 13,000 people in Scotland have registered on the stem cell donor register, which has potentially saved 42 lives. That is fantastic work, and I hope that the Government can help those organisations to build on it.

The importance of public awareness and frank conversations is brought into sharp focus when we consider that family refusal results in the loss of around 100 donors in Scotland per year. Changing that situation could make a huge difference to people on the transplant waiting list. It might not be an easy conversation, and it might feel morbid to discuss it, but it is important that we overcome the stigma and make our wishes known to our loved ones. I was moved by the stories from families for whom organ donation has been a positive experience, even helping them to come to terms with their loss.

Just recently, I was walking our dog in Chatelherault country park, in Hamilton, where there is a bench that is a tribute to Lanarkshire organ donors. I have passed it a number of times, but I knew that the debate was coming up, so I looked more closely. It is very poignant. As we would expect, there are flowers and little plaques, and it simply says that it is

“to remember those who gave the gift of a life time”.

I was pleased to hear about the measures that are currently in place for the families of the deceased through which they get a certificate. That must be hugely important and meaningful, as it is an extraordinary gift.

Evidence suggests that an additional benefit of good public awareness is that it will help to drive up donation rates. Although the soft opt-out system is important, the BMA and others have highlighted that a change in legislation is not a panacea and must be accompanied by investment in the infrastructure to support delivery, which other members have touched on in respect of intensive care capacity.

Scottish Labour supports the general principles of the bill and looks forward to working with others on amendments. Organ donation is one of the greatest gifts that a person can give, and it is life-changing to receive. It is important that the bill maintains the special way in which organ donation is viewed and that surrounding measures are implemented to ensure its success.

The Deputy Presiding Officer

Thank you. I remind members that, if you intervene, your request-to-speak button will be switched off, so you must check that you have switched it back on again. It is how the wonderful technology in the Parliament works.

15:35  



Alison Johnstone (Lothian) (Green)

I, too, would like to thank the Health and Sport Committee and all those who were involved in getting the bill to stage 1, including the expert groups and witnesses who gave their time. I also note the contributions of Anne McTaggart and Mark Griffin to the on-going debate.

Right now, about 4,300 people in Scotland are living with a donated organ. Thousands of people have a second chance at life because someone made the active choice to register as a potential donor. We are all aware of the heartfelt letters that organ recipients have sent to the families of donors to give them a sense of what the donation meant to them.

When it comes to getting people to register to be a donor, Scotland is doing well. As we have heard, around 50 per cent of Scots are registered, compared to 38 per cent of people across the UK. As a result, the number of successful donations has increased significantly over the past decade, with waiting lists having reduced by more than 100 in that period.

However, as we know, that is still not enough. In Scotland, 500 or so people are on the waiting list for an organ transplant and, sadly, 40 to 60 people will pass away while they are waiting. Despite having that high proportion of people who are registered, Scotland’s level of donations is the lowest in the UK. That is why, among other measures, it is vital to increase the total number of potential donors. Clearly, there is scope to do that, as there is a persistent gap between the number of people who state in surveys that they would wish to donate organs and the number who go on to join the organ donation register.

The question before us is whether an opt-out system, such as that which is proposed in the bill, is likely to increase the number of organs that are available for donation. As we have heard, and as the policy memorandum to the bill rightly notes, the evidence is mixed. Therefore, we need to be clear—and it seems that, across the chamber, we are clear—that an opt-out system is not an instant solution on its own.

Some countries have experienced increased donation rates after adoption of such systems, and in some there have been decreases. However, the evidence that was presented to the Health and Sport Committee and which is in many of the briefings that members have received suggests that an opt-out deemed authorisation system, as part of a broader strategy to increase donations, may well have a positive impact. Figures that were released by the Welsh Government show that there was a significant increase in the number of families consenting to donation after the new system was established. The figure in Wales stands at 80 per cent, compared with 63 per cent in Scotland.

NHS Blood and Transplant’s audit of potential donors in 2016-17 showed that 177 families across the UK said no to donation because they were not sure whether their relative would have agreed to it. Based on last year’s average number of 2.6 transplants per deceased donor, those decisions could instead have led to around 460 life-saving or life-transforming transplants. If, as the bill intends, the Scottish Government is able to reduce the high number of refusals by families in Scotland, it will have a very positive impact. However, the ideal is clearly still to have as many people actively opting in as possible. The rate of family consent is always highest when the person who has died opted in, and that is when the intent of the person is the clearest. That is one of the many reasons why section 2 of the bill is particularly important. It places a duty on the Scottish ministers to

“promote ... awareness about how transplantation may be authorised”.

It would therefore be useful if, in his closing speech, the minister could give some more detail on how that awareness will be raised.

Deemed authorisation depends significantly on people being well informed about their options, so awareness raising must continue over time. As we have heard, anyone who is resident in Scotland for more than 12 months will be subject to deemed authorisation. The logical conclusion of that is that we must have a continual, year-on-year campaign of awareness raising. NHS Blood and Transplant surveys show that more than 80 per cent of people support organ donation but only around 49 per cent have ever talked about it. We need to have a wider and more effective national conversation about organ donation. I would be interested to hear from the minister how he thinks that can best be achieved.

Before closing, I want to focus on the role of specialist nurses for organ donation. The whole system really hinges on the incredible work that the specialist nurses do. They lead the discussion about the patient’s decision on donation with the family. Where a decision to donate is established, they ensure that the relevant medical tests are carried out and they discuss the patient’s medical history with the family. However, the new system will potentially change their role significantly. For example, it is likely that the new duty to inquire that the bill establishes will, in practice, lie with the specialist nurses. There will be retraining needs related to that.

The evaluation of the Welsh system has drawn attention to the pressure to make the policy work that some specialist nurses feel. Some nurses were concerned that they might be blamed if consent and donation rates did not improve. We can learn from that, and I am sure that that is something that we will seek to avoid. It is also important that the guidance for specialist nurses and other professionals is clear, particularly in relation to some of the challenging situations that they might face, such as when the family objects, even though relatives have no formal entitlement to refuse a donation.

As part of a broader strategy to increase donation rates, the bill is welcome. Clearly, this is a sensitive issue, and the bill’s provisions will need to be implemented with care, with appropriate safeguards and with respect being paid to the difficult situations faced by families who have lost a loved one. However, if there is a chance that it will lead to more people getting the gift of life, it should be welcomed. Greens support the general principles of the bill and will vote accordingly at decision time.

15:41  



Alex Cole-Hamilton (Edinburgh Western) (LD)

I am delighted to stand here today and offer my full-throated support for the Human Tissue (Authorisation) (Scotland) Bill. When I was out losing elections as an aspirant Liberal Democrat candidate, I was often asked at hustings and party meetings, as I am sure other members were, “If you make it to Parliament, what will be your member’s bill?” It was a hypothetical question, but I always gave the same answer, and it was the bill that we are discussing today. I always supported legislation to introduce a soft opt-out system and presumed consent for organ donation, and I will tell members why.

When I was 14 years old, I met a guy called Anders Gibson. He was 12 at the time. He and I soon became friends, and I was told by adults around Anders that I had to be prepared for the fact that he might not see 20, because he had cystic fibrosis. However, happily enough, he rode the wave of medical advancement and benefited from new treatments that emerged in his late teens. He went on to become a fierce campaigner on cystic fibrosis issues, an ardent footballer and a brilliant stand-up comic. Very sadly, we lost Anders in 2014, when he was in his mid-30s. I speak in his memory today and I am grateful for his impact on my life and the lives of everybody with cystic fibrosis in this country.

It is for that reason that I entirely understand the personal motivation that led to Anne McTaggart and Mark Griffin introducing members’ bills on the subject, and I thank them for their work. They have paved the way for change in this country that might not have happened were it not for their efforts, and rightly so, because we are pushing at an open door here.

As we have heard, we have a high rate of registration with the organ donation register and some 70 per cent of our fellow countrypeople support change in this regard, but there is always a disconnect—it has been alluded to by several speakers in the debate—between those who do not mind the idea of having their organs give life to others in the event of their passing and those who actually sign up to the register. The human cost of that disconnect is that, in Scotland, on any given day, 500 people are waiting for an organ, some of whom may wait in vain and pay the ultimate price.

The bill might not create a huge uplift in the number of organs that are made available, but it is a vital step and one that we need to take. It is important to recognise that, if we introduce a soft opt-out system, it will not mean that everybody’s organs will automatically be donated in the event of their death. People will need to die in specific conditions for that to happen. Nevertheless, it will give hope to those 500 people where none existed previously.

We do not need to wait for people to die in order for others to benefit from organ donation. In mid-March, I will be hosting a photo call after First Minister’s question time for Give a Kidney, which is a UK organisation of philanthropic organ donors that does not get enough publicity. I urge all members to learn about it because it is truly heaven sent.

The process around the bill has been enjoyable, touching and inspiring. I want to pay tribute to the outstanding work of the specialist transplant nurses: they are a credit to their profession. I had no idea about the pre-death procedures that take place in advance of a transplant. They are onerous; hundreds of questions have to be asked of families at the most vulnerable point in their journey through grief. Often prior to somebody’s actual death, families have to take time away from the patient’s bedside to answer those questions. The transplant nurses ask them in a way that makes it a cathartic experience. The families get to unpack their relative’s life: their likes and their dislikes, and who they were as a person. It was really touching to see how the nurses make a bureaucratic exercise intensely cathartic for the families around them.

However, it is vital that that process should not become a barrier. Although I understand the duty to inquire, I support the suggestion from my friend and colleague Mike Rumbles that we need an amendment regarding the requirement for families to provide evidence that would “convince a reasonable person” about the deceased’s views. Nevertheless, retaining opt-in is important—we need to engender those conversations, to continue to make organ donation feel like giving a gift and to provide an element of the process through which people can proactively make that statement. People who receive organs absolutely regard it as a gift.

One of the most touching moments in the consideration of the bill was a breakfast session with half a dozen recipients of organ donations, who were inspiring people who talked of their gratitude and exhibited such good will towards their donors. They particularly felt the impact of that gift on their lives.

It is so important to recognise that each of those people have been through a roller-coaster of emotions on that journey, and we need to do more for them in the periphery around the bill. Anders, whom I mentioned at the start of my speech, had four abortive attempts at going to Newcastle to get a lung transplant. Waiting by the phone, being turned around to start the whole process again and feeling guilt about waiting for somebody to die had a profound effect on his mental health. At the moment, we do nothing to help people who are on the transplant register, and I hope that the minister will address that in his remarks and agree to meet me to discuss how we can do more.

To get down to brass tacks, I absolutely support the principles of the bill. It will give hope to those 500 people and do more to make sure that people like Anders will have a fighting chance at survival.

The Deputy Presiding Officer

We move to the open debate.

15:48  



Emma Harper (South Scotland) (SNP)

I am pleased to speak in today’s stage 1 debate on the Human Tissue (Authorisation) (Scotland) Bill as deputy convener of the Health and Sport Committee. The committee took a large volume of evidence, and I thank the clerks for their hard work and diligence. I also thank all those who provided evidence to the committee, including healthcare professionals—among them Lesley Logan and her team—who provided us with insight and medical expertise so that we could be better informed about the process of organ and tissue retrieval and donation, as well as the transplant process.

Like Monica Lennon, I also thank the organisations who provided briefings ahead of this stage 1 debate, including Anthony Nolan, which supports education with the Scottish Fire and Rescue Service and which has previously worked with my colleague Bill Kidd MSP.

As a former member of trauma and liver transplant teams in Los Angeles, I was especially grateful to hear from people who were waiting for an organ. The personal voices of recipients and people waiting for organs and tissues are vital in informing the debate, because around 500 people in Scotland are waiting for a transplant at any given time.

The primary aim of the Human Tissue (Authorisation) (Scotland) Bill is to increase the organ and tissue donation rate. Organ transplantation is a complicated process. It normally requires two teams of healthcare professionals—and two surgeries—to engage in and co-ordinate the process of obtaining the organ and transplanting it into the recipient. I have participated in the retrieval of organs, as well as the transplantation of solid organs into a recipient patient. On one occasion, I even went up three floors in the elevator carrying a heart in a sterile, ice-filled bowl from one surgical team to the waiting transplant team. It was an awesome—in the true sense of the word—experience to see the gift of an organ being transplanted into a recipient.

The biggest challenge that I have faced while working on the bill has been in relation to deemed authorisation or presumed consent. One of the key arguments in favour of deemed authorisation is the fact that many people in Scotland support donation but have not yet recorded their wishes on the organ donor register. In evidence, Dr Sue Robertson, who is the deputy chair of the British Medical Association Scotland, told the committee that about 50 per cent of the Scottish population have already opted in, so they are already registered to be donors. The committee also heard that 68 per cent of people in Scotland support being organ and tissue donors, but that not all of them have got round to registering.

It is worth highlighting that, when we talk about organ donation, we are referring to the heart, lungs, liver, pancreas, kidneys and even the small bowel; that is before we even start on tissue availability. I believe that we must encourage people to make an informed choice on donation. We need to encourage families, friends and colleagues to have conversations about donation. It is easier to have a conversation about donation when family members meet to engage in a chat than it is at the stressful and traumatic time when a family member is in the intensive care unit. When the patient has registered their wish to donate, it puts the specialist organ transplantation nurses, who have to have those difficult conversations with the relatives of the patient, in a better position. Therefore, I encourage people to register their wishes.

For me, having such conversations, along with education, is key. During the stage 1 process, I discovered from surveying my family and my staff team that all my family and my staff are on the organ donor register. I was quite chuffed to hear that, because no coercion was needed. My dad, who is 77, proudly pulled out his organ donor card to show me his evidence. He would be absolutely happy to give the gift of his heart, liver, lungs, kidneys, pancreas or even his eyes if they could save the life of someone or support their vision. If, in some terrible, tragic or traumatic circumstances, someone’s life depended on the gift of any of those organs, he would be grateful to have the opportunity to make that gift.

Donors could be called superheroes because they have the power to save many lives with the use of their heart, their liver, their lungs, their two kidneys or their pancreas. We can all be superheroes. I am on the donor register, and I would be interested to know how many other superheroes we have in the chamber today.

I was a bit disconcerted by the conversation that I had with my nephews, one of whom is 14 and one of whom is 16. Neither of them has had a conversation about organ donation with any educator. The briefing from the Royal College of Physicians of Edinburgh says that it is particularly important that we provide education in tandem with the measures in the bill. One of my big asks is we engage with education on donation that is provided by schools and with ethnic minority communities. That engagement must be sustained as the bill progresses so that we can save lives in Scotland. We must make sure that people are able to opt in and to opt out, and that there is deemed authorisation. In that way, we will save lives.

15:54  



Maurice Corry (West Scotland) (Con)

It is my pleasure to speak in the debate on the bill today. The subject is certainly a challenging one for all of us. ln the midst of grief over the loss of a loved one, organ donation is one of the most positive and life-changing actions that we can take. Playing a part in giving someone a second chance at life is a privilege. With that in mind, any legislation that alters how the process works needs to be carefully considered, and it must fully inform those whom it affects.

We have seen a rise in the number of organ donations in Scotland over the past 10 years. We can only imagine what organ donations mean for those living with kidney failure or a congenital heart defect and their families. It gives them a renewed outlook on what is possible. However, we have heard that although the number of organ donations in Scotland may be increasing, there are still many living in need of a transplant. The necessity of having more organ donors on the register is clear: over the past year, 27 people in the UK died while awaiting a heart transplant.

That is the area where the proposed legislation seeks to bring about change. By creating three options—opt in, opt out or deemed authorisation—the bill aims to encourage an all-important increase in organ donations in Scotland. I thank John Mason for his email, with his Christian angle on the matter. I found it very helpful and thought provoking as I spent a little time in church today before I came to the debate.

Deemed authorisation—in essence, presumed consent—has been successfully adopted in a number of countries. Indeed, of the top 10 countries in the world for organ donation rates, nine have adopted a similar presumed consent model. In the right circumstances, it can work.

Many people support organ donation but never get round to signing themselves up actively as donors, despite the best of intentions. Often, public support does not translate into actual donations. Deemed authorisation would help to tackle that problem. For many people, it produces the outcome that they may have intended and supported, but which they have not acted on.

The option of deemed authorisation or presumed consent also means that there is a higher chance of medical suitability. With a larger pool of potential donors, the likelihood of identifying a match is greater. We all want to see a rise in organ donations, and in principle the objective of the bill is right and well meant. It has the potential to be effective in leading to more successful donations.

I am pleased to see that there will be safeguards surrounding the change. For example, it is perfectly right that those under 16 or who are incapable of understanding the implications of deemed authorisation will not be automatically opted into organ donation upon their death. Those who have been a resident in Scotland for under a year will also be excluded from that pathway. The measures go some way towards ensuring that the bill is not a blanket change in legislation with no thought for potentially sensitive cases. Having a soft opt-in system solves the issues in cases in which the wishes of a deceased person were not made known before their death. In such situations, it maximises the use of potential donors.

However, although having three options—opt in, opt out and deemed authorisation—might be the right way forward, changing the law alone will not work. The bill should not be implemented without proper investment in organ donation awareness. There must be active engagement alongside the change in legislation.

First and foremost, I hope that there will be engagement with the families of the deceased, including—as I said to the minister—the executors of the deceased’s estate, those with power of attorney and the Office of the Public Guardian.

The way in which families are approached and handled by organ donor professionals in the hours after the death of a loved one is important. A sensitive donor liaison team can make all the difference to a family’s experience. With generally exemplary training, those teams can help to guide families’ decisions—yet Scotland has the lowest family authorisation rate in the whole of the UK. For that reason, the proposed changes will not work unless families are consulted as part of the process. If loved ones are fully informed about what the changes mean, the transition to deemed authorisation will be much smoother. I hope that the bill will be considerate about and mindful of upholding the rights of the deceased as well as the rights of families. The Scottish Government needs to take into proper consideration the ethical concerns that can spring up from that balance.

Secondly, there must be engagement with the wider public, which can surely be done only if there is a strong emphasis on communication and awareness. We cannot take for granted the importance of having a public discussion on changes with such a subject. Without such discussion, how can we expect to see a noticeable rise in organ donations?

We have seen the benefits of the partnered visits conducted by the Scottish Fire and Rescue Service and Anthony Nolan to Scottish secondary schools. Through such visits, teenagers have been equipped to understand what organ donation really means and how they can sign up. Awareness campaigns can be the spark that encourages families to talk about their wishes. Like Emma Harper, I discussed the subject last night with my daughters and son and asked them for their views—they clearly supported the opt-in, opt-out approach. I am glad to say that half of them had donor cards—which I had not realised—and one of them was on the Anthony Nolan register, which I commend.

Organ donation awareness and communication need to be embedded at the root of our communities. In that way, people can understand how they can choose to express their wishes and the implications that their choice could have for their family. The reason why my children had made their choice was because they had been told about the process at their secondary school, so the approach is working in the Argyll and Bute Council area.

Co-ordinating those efforts to make the handling of the process as efficient as possible but with the utmost consideration is in everyone’s interests. Even so, I agree with Mike Rumbles, as I also have concerns about the written proof of the deceased’s wishes being necessary to support the family’s wishes at such a difficult time. However, I am advised that the required questionnaire is the safety mechanism that will be in place.

I welcome today’s debate. We all want to see a rise in donation rates in Scotland, but for that to be possible, all sides must be listened to and taken into consideration. If legislating for a soft opt-out option is the way forward, the Scottish Government must ensure that that is done sensitively and with an effective and supportive infrastructure.

The Deputy Presiding Officer (Linda Fabiani)

You must close, Mr Corry.

Maurice Corry

The proposed legislation cannot stand alone; it needs to be connected to increased awareness, communication and co-ordination.

16:01  



Sandra White (Glasgow Kelvin) (SNP)

I thank all the organisations, individuals and professionals who took part in the evidence sessions, the meetings and surveys that have proved to be so invaluable to our report. I also thank Mark Griffin and former MSP Anne McTaggart, who introduced a member’s bill in the previous parliamentary session. Although the Health and Sport Committee at that time could not support the general principles of the bill, I believe that it has led to the much more comprehensive bill that we are looking at today at stage 1.

I will be perfectly honest: having supported the previous bill, I thought that I had learned a great deal about transplantation and organ donation, but I was very wrong. Having heard the evidence on the bill, I realise that the Human Tissue (Authorisation) (Scotland) Bill is much more complicated and comprehensive than I had thought. The subjects of the evidence included mandated choice, the rights of the individual, the gift element, the authorisation process, the rights of the family and their consent, post-transplant care and mental health. It is a huge and very comprehensive list.

I felt while hearing evidence to the committee that I was learning all the time. An area that I had known nothing about, and to which I paid special attention, was pre-death procedures. I had never heard of them, so I will concentrate on them. During evidence taking, I was intrigued by the procedures, so I asked questions about them. The committee convener, Lewis Macdonald, mentioned the 2006 act and highlighted many points.

I think that I will take my glasses off, as I do not seem to need them today.

The bill creates two procedures—type A and type B—

“with further details ... contained in regulations. It is anticipated that type A procedures would be more routine”.

The minister mentioned in his opening remarks that those are blood and urine tests. Those tests

“would be allowed to proceed under deemed authorisation or when the person has opted-in.”

It is anticipated that type B procedures will be

“less routine including the administration of medication or more invasive tests. Regulations could also specify what requirements would apply to type B procedures and how they could be authorised. Deemed authorisation would not automatically apply to type B procedures.”

The bill’s policy memorandum states:

“In all cases where pre-death procedures may be undertaken, a decision will have been taken that the person is likely to die imminently and that, if the person is receiving life sustaining treatment, this will be withdrawn.”

That is very complicated but very necessary. I found it intriguing that those things were going forward.

The stage 1 report says:

“During our informal meeting with families who have authorised donation, we asked their opinion on pre-death procedures. They expressed their discomfort of any invasive tests on relatives but accepted the notion of blood tests and other routine tests.”

The subject is very sensitive and very important.

We questioned various experts, including Dr Empson, who confirmed that, although health professionals would not go through specifics with families for every blood test that was taken, families would be involved in respect of tests that help to certify death by neurological criteria—for example, to observe the brain-stem-death test taking place. As Dr Empson explained:

“When a potential donor is going down the route of donation, appropriate information is shared sensitively and compassionately with families.”—[Official Report, Health and Sport Committee, 20 November 2018; c 18.]

That might answer some questions that have already been asked.

A lady who gave evidence had gained understanding through seeing the process. That was very brave of her, but she felt that her relative had not suffered and so agreed to donation of organs. As I said, the issue is very complicated.

There are other pre-death procedures issues to do with the law and doctors. The Law Society of Scotland highlighted such issues.

“Doctors should be concerned with prolonging the life of the patient, rather than viewing them as a source of organs”,

although that quotation is not from the Law Society’s evidence. The Law Society also mentioned the Hippocratic oath, in which the first consideration is the health and wellbeing of the patient.

I thank the minister, as well. When he gave evidence to the committee, he reiterated the need for transparency to maintain a high degree of trust in donation. I know that the minister has accepted the committee’s recommendation on the steps to inform families on pre-death procedures and the proposal to review procedures in five years. That is really important, because medical science moves on, so the approach might not be appropriate by then.

I am very supportive of the bill, and I thank everyone who gave evidence. It is a comprehensive bill, and I certainly learned a lot during its passage.

16:07  



Mark Griffin (Central Scotland) (Lab)

The Human Tissue (Authorisation) (Scotland) Bill is an important piece of legislation, and the Government has my support for introducing it. I lodged a proposal for a member’s bill to introduce the same system that the Government intends to introduce, and was grateful to the Health and Sport Committee for giving me permission to take that forward without consultation because of the extensive work that had already been done. I said at my appearance at committee that I would take forward my proposal only in the event of the Government’s deciding not to. Therefore, I very much welcome the bill.

In the committee and in previous debates, I have spoken about my personal experience of the current organ donation system. I want now to talk about the huge impact that increasing the number of organs that are available for transplant could have on the lives of people who are on the transplant waiting list and their families.

Almost 12 years ago, a man received the phone call that he had been waiting for for more than 10 years. He was told that a transplant heart was available and that he should come into hospital to prepare for his operation. He had taken ill 10 years previously, and had struggled with the diagnosed heart condition ever since. His health gradually deteriorated all the time, there were regular hospital admissions, and he lost the ability to work in his job as a welder or to take part in any physical activity at all.

That man and his family made the trip to the hospital and said their goodbyes that day, full of hope that the operation would lead to a much better quality of life. Unfortunately, that was not the case. After the operation, he was placed in intensive care as expected, but the hoped-for recovery just did not happen. That was not as a result of failure in the care that he received from the NHS consultants who carried out the operation, or from the intensive care nurses who sat vigilantly by his bedside 24/7 during the recovery period. The reason why he did not recover was that his liver, kidneys and other organs failed as a result of having had to work harder in the previous 10 years to compensate for the heart condition, and they just were not strong enough to cope with the operation.

A matter of days after the surgery, the man died at the age of just 47—he was a young man, given life expectancy in this country. He left behind a wife and a family of four children—two boys and two girls. His oldest child was 22 and the youngest was 13 when they lost their dad. Today, he would have been 59. He has missed the university graduations and weddings of his children, significant birthdays, anniversaries and the births of all his grandchildren. So many family milestones have been missed and are still to be missed.

It would be naive to expect everyone to survive a major operation such as a heart transplant, but it is common sense that, for the person to be given the best chance of survival, they have the operation as soon as possible after they have been placed on the transplant waiting list. That is where the bill becomes significant. If we can follow the lead of other countries around the world and implement a system of presumed consent, alongside a high-profile publicity campaign, we can boost the number of organs that are available for transplant, so that people will get access to operations sooner, and we can help to save lives. Even just one more organ donor from one tragic incident means many more saved lives.

I pay tribute to the Evening Times, the British Heart Foundation and Anne McTaggart for the fantastic work that they have all done in working towards an opt-out system. I also acknowledge the early adopters and drivers of the policy among Government party members, including Kenny Gibson, whose hard work in pushing for the change has been notable.

During the various campaigns, research has repeatedly shown—as others have said today—that although 90 per cent of people are in favour of organ donation, only just over half the population are on the organ donor register. If people are willing to receive a donated organ, they should be similarly willing to donate.

The only thing that prevented me from registering as a donor years ago was my unwillingness, as a young man, to confront my mortality. That is a silly reason when we think about it, and we could overcome such things by having a system of presumed consent.

Some members will know whom I was speaking about earlier, and most others will probably have guessed that the reason why I have spoken so personally about organ donation is that the man whom I described was my dad, who was lost to me, my mum and my brother and sisters at such a young age. That is why I feel so strongly about the subject, why I support the bill, why I am speaking today and why I whole-heartedly support the Government in its ambition to introduce a system of presumed consent.

16:12  



Mike Rumbles (North East Scotland) (LD)

I have been on the organ donor register for the past 20 years. When we passed the Human Tissue (Scotland) Act 2006, I was on the then Health Committee. In the stage 3 debate on the Human Tissue (Scotland) Bill, I said:

“The bill ... is perhaps one of the best bills that the Scottish Parliament will ever pass. It is good news for the families who are waiting for a transplant for their loved ones. I hope that, at decision time, the bill will be passed unanimously.”—[Official Report, 2 February 2006; c 22985.]

The bill was passed almost unanimously, with the exception of the votes of four Scottish Socialist Party members. I noted in that debate that we had achieved more than 25 per cent of people in Scotland on the organ donor register. Now, 13 years later, we have more than 50 per cent of Scotland’s population on the register.

The 2006 act has been a success. I understand that the Scottish Government now wishes to go further, so we have a bill before us that will change the system from opt in to opt out in order to achieve even more successful organ donations.

The Health and Sport Committee’s report says:

“The overarching aim of the Bill is to increase the organ and tissue donation rate”.

I could not agree more with that aim, and I will concentrate on that, because I do not believe that section 7 of the bill will achieve it.

The Minister for Public Health, Sport and Wellbeing said at the Health and Sport Committee:

“The current legislation and the proposed legislation are clear that the right to authorisation rests with the potential donor.”—[Official Report, Health and Sport Committee, 27 November 2018; c 24.]

Unfortunately, that is not what section 7 says. It says that the deemed authorisation in section 7 does not apply if a person provides evidence to a health worker

“that would convince a reasonable person that”

the adult was unwilling for the transplant to take place. Why have those words been used instead of the wording in the current legislation, which states that

“the nearest relative may not give authorisation ... if the relative has actual knowledge that the adult was unwilling for any part of the adult’s body ... to be used for transplantation”?

There is a real difference between those two approaches. In the bill, the evidential bar for the family of the deceased to confirm the wishes of the deceased is being raised unnecessarily. The family of the deceased will have to provide “evidence ... that would convince” about the wishes of the deceased. What sort of evidence does the new wording in the bill require in that regard? The bill is silent on that.

I acknowledge that the public health minister has said that the bill does not change the fact that the right to donation rests with the potential donor. However, that right has to be a real right. Again, I focus on the problems that the family would have in meeting the new evidential test about the wishes of the deceased, particularly if those wishes had been expressed to them only orally.

In summing up the stage 3 debate on the Human Tissue (Scotland) Bill, the then Deputy Minister for Health and Community Care, Lewis Macdonald, said:

“Our new system of authorisation, which is founded on honouring people’s wishes, will mean that the person’s own wishes are paramount.”—[Official Report, 2 February 2006; c 22989.]

I could not agree more. I continue to believe—as, I hope, does Lewis Macdonald—that, if we are to get the uptake in organ donations that we need, we have to get the wording in section 7 of the Human Tissue (Authorisation) (Scotland) Bill right.

Keith Brown

Is the member saying that the rights of the donor—someone who is in full possession of their faculties, who has decided to donate—should be superseded, whatever evidential bar is set, by the family? I think that that is what he said.

Mike Rumbles

They certainly should not be superseded by the family—absolutely not. With the 2006 act, we said that we had to have a system in which the rights of the individual donor are paramount. That is the important thing.

The reason why I am so exercised about the words in section 7 is that, if those words remain in the bill, I am fearful that the legislation could end up being counterproductive to achieving an increase in organ donations, which is what all of us in the chamber want.

In 2006, all the members of the Health Committee were concerned about the issues that had arisen at Alder Hey children’s hospital, the Bristol royal infirmary and other hospitals, which had resulted in a loss of public trust; I know that the then Deputy Minister for Health and Community Care would acknowledge that. Indeed, we need only look at more recent incidents, such as the baby ashes scandal, to see that public trust is precious and that we must not put it at risk.

I make it clear that I want to vote for the bill at decision time. I am pleased to see that, in paragraph 35 of its report, the Health and Sport Committee agrees with me that,

“if the nearest relative, next of kin, or a longstanding friend is in possession of information regarding the deceased wishes on donation, this information could be taken into account”.

That is marvellous. However, the problem is that that is not what section 7 of the bill says. It replaces the wording about “knowledge” of the wishes of the deceased with a requirement to provide “evidence ... that would convince” a health worker of those wishes. Why has that unnecessary change been made?

If the minister confirms in summing up a willingness to return at stage 2 to the language that is used in section 7 of the Human Tissue (Scotland) Act 2006, I will happily vote for the Human Tissue (Authorisation) (Scotland) Bill. If the new words about “evidence ... that would convince” remain in the bill, rather than the current words in the 2006 act about “knowledge”, that would strike out one of the fundamental principles of the bill.

I am with the Health and Sport Committee on this. In paragraph 10 of its report, the committee says:

“Deemed authorisation would apply when someone dies without making their decision on donation known, with their consent to donation being presumed unless their next of kin provided information to confirm this was against their wishes.”

That is what the committee has said, and that is what I support.

The Deputy Presiding Officer

You must close, please.

Mike Rumbles

Knowledge is knowledge and evidence is evidence—there is a clear difference. I urge the minister to commit to using the word “knowledge” and not “evidence” in the bill. I want to vote for the bill, but before I can do that at decision time I need to hear a commitment from the minister that he will look at changing the wording in section 7.

16:19  



Kenneth Gibson (Cunninghame North) (SNP)

Although this is a stage 1 debate, it is actually the culmination of decades of concerted campaigning by patients, medical professionals, third sector organisations, newspapers such as the Glasgow Evening Times, and, of course, many of my colleagues in the chamber today. Indeed, on 1 November 2012, I led a members’ business debate on this issue. I am, therefore, delighted to contribute to this afternoon’s debate and to support unequivocally the principles of the bill.

I recognise the excellent work that has been done by the Health and Sport Committee, and I thank the British Heart Foundation in particular for the excellent briefing that it circulated to members ahead of this afternoon’s debate, which provided illuminating data on organ donation in Scotland. More important, I acknowledge the organisation’s dogged and proactive support for soft opt-out over many years.

We should also, of course, acknowledge the sterling work of Anne McTaggart in the previous session of Parliament and, in this session of Parliament, the work that has been done by Mark Griffin, who gave a moving speech a few minutes ago.

As we know, there has been a significant shift in attitudes towards organ donation in Scotland over the years, and it is incredibly heartening that more than half—50.4 per cent—of the Scottish population are already registered to donate their organs or tissue after death, which is far higher than the UK average of 38 per cent. That shift has yielded positive results, with a 22 per cent drop in people waiting for transplants between 2008 and 2018. However, sadly, I am sure that many of us know someone who waited too long for an organ, or who is still waiting today. Indeed, we heard about such cases in the chamber earlier this afternoon.

At the end of 2018, 577 people in Scotland were waiting. Any reduction in that number, no matter how small, will be life saving. Having campaigned on this issue for many years, I was delighted when the commitment to introduce a soft opt-out system was included in the SNP Government’s 2017-18 programme for government. Indeed, we could have passed a member’s bill to legislate on the issue in the previous session of Parliament. I voted for it, but the majority of colleagues deemed that it was not robust enough to prevent unintended negative consequences.

The Scottish Government has fully consulted people working in donation and transplantation to ensure that the proposed system will work not only on paper but in practice. The consultation shows that there is not only expert clinical backing for the bill, but that there is widespread public support for the principle of organ donation; that support needs to be translated into donor numbers, as there is a gap between the number of people who state that they would wish to donate organs and the number who join the organ donation register.

By creating a soft opt-out system, we can more easily capture the estimated 80 to 90 per cent of Scots who support organ donation. Unfortunately, family authorisation for organ donation in Scotland, at only 57 per cent, is the lowest in the UK. As Dr Sue Robertson, the deputy chair of the British Medical Association Scotland, said:

“if you ask people, nine in 10 will say that they would wish their organs to be donated. We are looking for that 40 per cent who have not opted in but who actually want their organs to be donated. Those are the people who we want to have that conversation with their families, because we know that they actually want their organs to be donated.”—[Official Report, Health and Sport Committee, 13 November 2018; c 14.]

On that point, I heard what Alison Johnstone said earlier about specialist nurses, and I think that what she said was important.

Of course, the bill would introduce a soft opt-out system, meaning that it incorporates safeguards and conditions that might include seeking authorisation from a person’s nearest relative in cases involving certain groups of people or certain circumstances. This is not about the wishes of family overriding the wishes of donors and, as the Minister for Public Health, Sport and Wellbeing, Joe FitzPatrick, has clarified, when the family are asked about donation,

“they will not be asked for their views; they will be asked about what they believe were the views of their deceased relative who is the potential donor.”—[Official Report, Health and Sport Committee, 27 November 2018; c 24.]

There is strong evidence to suggest that a soft opt-out system can improve levels of family authorisation, with those who live in countries with opt-out legislation being between 27 and 56 per cent more likely to authorise donation of their relatives’ organs. Indeed, that has been the case in Wales, where consent rates have risen by almost half, from 49 per cent in 2014-15 to the current level of 72 per cent.

Of course, medical suitability is key, because only 1 per cent of people die in circumstances that leave their organs suitable for medical use. Unfortunately, we cannot legislate for medical suitability of organs, so we must concentrate our efforts on areas in which we can make real change, such as increasing the number of potential donors and maximising family consent. In doing so, we will increase the pool from which medically suitable donors can be found and increase the likelihood of patients being matched with suitable donors and getting off waiting lists.

David Stewart

The member is correct about the 1 per cent figure. However, does he share my view that, if we increased the number of medical care beds, that would allow the medical circumstance in which more organs would be available for transplantation?

Kenneth Gibson

Yes, I agree. I listened with care to what Mr Stewart said earlier. The bill is not a magic bullet, and other issues must be taken into account. As has been shown in Spain, for example, increasing intensive care beds makes a big difference.

As many members said, it is vital that the bill is accompanied by a co-ordinated campaign to raise public awareness and a concerted effort to make all sections of our diverse Scottish society aware of their rights. That is a key feature of the Health and Sport Committee’s report on the bill. The committee recommends a high-profile public information campaign, including outreach sessions with minority groups and awareness raising with children, through appropriate methods. Lewis Macdonald covered that in detail. I agree whole-heartedly with that recommendation and encourage the Scottish Government to take it forward.

The bill is simply the latest step towards driving a long-term change in attitudes towards organ and tissue donation in Scotland. It is an important step, which I wish that we could have taken many years ago.

The Deputy Presiding Officer

Please close.

Kenneth Gibson

In supporting the bill, we will be voting to increase the pool of viable organ donations and to improve and indeed save the lives of people in Scotland who are waiting on an organ. We are not stripping away individual choice; we are empowering the majority of people who support organ donation but might not have had the time or knowledge to formally register.

The Deputy Presiding Officer

Please close.

Kenneth Gibson

In death, our bodies would normally give the world little, but in donation, our bodies can give life and happiness to others for many years.

The Deputy Presiding Officer

Okay. I will have to cut the final two speeches in the open debate to five and a half minutes.

16:26  



Tom Mason (North East Scotland) (Con)

The issue before us is of unmistakeable importance. Organ donation is a life-saving procedure for thousands of people every year.

More than 500 people in Scotland are waiting for a transplant, so we need to find ways to increase the pool of available donors and speed up the process of donation for more people.

With that in mind, I support the general principles of the bill and the incorporation of deemed authorisation into the current system. I think that the majority of people in Scotland will welcome proposals to create a soft opt-out system, as is confirmed by consultations by the Scottish Government, the Royal College of Nursing and the British Heart Foundation.

A fundamental reason for introducing the bill is to put in place a system that will increase the pool of donors and thus the chances of someone on the transplant list getting a suitable organ in a shorter period. In the Health and Sport Committee’s discussions on the matter, concerns were raised about the bill’s ability to deliver on that aim. However, people were by no means unanimous in taking that view. The bill should be given the chance to progress, with such concerns addressed by the introduction of measures to ensure that it achieves its stated goal.

I also hope that, at the bill’s subsequent stages, issues to do with the information that is available to the wider public about the organ donation programme will be addressed.

The Royal College of Nursing has asked for a public awareness campaign for at least a year before any change comes into effect, and the Royal College of Physicians asks for a parallel process of public education about organ donation and the infrastructure that is available to support families.

That is particularly important, given that 80 per cent of Scots support organ donation but only 52 per cent have signed up to the organ donor register. Getting people to support donation is an important first step, but it is vital to capitalise on their support and ensure that they put themselves forward and expand the number of potential donors.

The Law Society of Scotland noted that it would be extremely difficult if donations were to proceed against the wishes of the family. However, allowing families an effective veto over the previously expressed wishes of the potential donor would be contrary to the fundamental aim of the bill. At stage 2, the committee will have to consider how to balance those competing issues, to ensure that the legislation has legitimacy in the eyes of families and the wider public.

We must never lose sight of the human side of this issue and why it is so important. In 2014, one of my constituents was taken into hospital with an extreme nosebleed. He was diagnosed with high blood pressure. By the end of the year, he had been diagnosed with total renal failure. Fortunately, he was suitable for peritoneal dialysis, which involved liquid transfer treatment up to four times a day and the requirement to have about two litres of chemical fluid attached to his stomach all the time.

That is not easy to say, and that relentless regime was not easy to cope with, day after day, with no end in sight. The only escape was a kidney transplant. In October 2015, my constituent learned that a prospective organ was available, only to find out that it was not suitable.

In 2016, there was the prospect of another kidney, but that was not a successful match either. Deep clinical depression threatened, mitigated only by the dedication of my constituent’s family members. At last, at the end of 2016, a successful match was obtained, which allowed his life to get back to normal. So far, this kidney transplant has been successful, but there are signs that a viral infection is slowly destroying the kidney. Once again, donors will need to be found. For my constituent and the countless others in a similar situation, we are obliged to do all that we can to maintain a good supply of organ donors.

In 2017-18, more than 400 people across the UK died while waiting for a transplant. We have the clinical skills and expertise that are necessary; we just need to expand the pool of potential donors so that organs can be made available sooner. The public would, I think, support such a move, so let us move forward. Urgency is important, but so is getting the legislation right. It is with that in mind that I look forward to the bill receiving further consideration in committee and returning to the chamber for stage 3 in due course.

The Deputy Presiding Officer

Thank you for giving me some time back, Mr Mason. As the last of the open debate speeches, Mr Brown, you can have six minutes.

16:31  



Keith Brown (Clackmannanshire and Dunblane) (SNP)

I was about to ask whether I was allowed to donate half a minute of my time to other members, but I am grateful for getting it back.

The debate has been very good and almost entirely consensual. I am grateful to the members of the Health and Sport Committee. I was on the committee for a short time and I know that they went about their business extremely diligently, through quite a number of lengthy evidence sessions. Like other members, I was very impressed by the specialist nurses, particularly when they did a role play of family members going through the medical and social history questionnaire. Obviously, that is at a very difficult time for families, but the questions were asked professionally, thoughtfully and with kindness.

I thank donors’ families, whose evidence was about what were obviously very difficult circumstances. Even in that evidence session, there was some concern. One family member talked about the questionnaire and said that she would rather not have been part of that process. I cannot remember whether she said that she would rather that there was an opt-out, so that she would not be put in that situation, or whether the rights of the donors were evident and accepted, but she would have liked to have the process taken out of her hands.

The process is exhausting and extremely intrusive, and happens at a very difficult time. As one member said, relatives are sometimes questioned while the donor is still alive. I wonder whether there could be further scrutiny of the process. Would it be possible, for example, to ask the potential donor some of the questions, at an earlier stage? It is difficult for a son, daughter or mother to be asked about the sexual history of their relative. Could more medical tests be done on the person concerned, at that point or earlier? If we can find a way to reduce the intrusiveness of the questionnaire, that would help to increase donor figures.

There were other concerns. Some witnesses who were registered donors told the committee that if there was to be a soft opt-out, they would come off the register. They felt strongly about what they saw as a diminution of their rights if the state could go in and take organs from their body without them having taken any action to prevent it. That concern is out there and it worries me somewhat.

However, my main concern is the relatives’ discounting of the wishes of the donor, who is the central person in all this. We heard that that happens time and again. We heard of instances in which people did not want to donate and did donate. We heard of many instances in which people wanted to donate, but the family vetoed it. The family veto exists, whatever some members have said. We heard time and again about family refusals—I think that another member said that there have been about 100 cases in which somebody in full possession of their senses and who knew what they were doing took a legally competent decision to donate, but their wishes were frustrated by someone, for their own reasons, which might be understandable. That person might not even have been a close family member. That should be a real concern to us all. We can imagine somebody who might benefit from, say, the donation of a heart, and somebody who has, in all conscience, taken the decision to donate their heart, and possibly other organs, and then that wish is frustrated by family members, and the person waiting on the heart does not get it. Kenny Gibson said that every one of these cases is crucial, and if we can increase donation by one it would be a tremendous achievement.

It is also true to say that we heard a lot of evidence about the feelings and wishes of the medical staff. The convener is quite right that it was said that medical staff cannot be expected to proceed with a donation when the families are expressly against it, or words to that effect—I do not want to put words in the convener’s mouth.

I do not agree with that position. There are jurisdictions where the right of the donor to donate is what is respected. If the family members understand that well in advance—and I support all the work that has been suggested to make sure that there is a campaign so that people are much more aware of this—there should not be a family veto. The donor’s right should be respected. Of course relatives, especially in that horrible set of circumstances, will have strong feelings, but it is my view that the person who is at least at that stage in possession of the organs should have the ultimate right over them. I would be grateful if the committee could look at a number of things—I have highlighted some of them—including evidence from some of the jurisdictions where they follow that path.

There is also an issue about the age at which people can decide about donation. I think that the bill proposes that people can decide from the age of 16. That would include 16 and 17-year-olds, a situation that has no counterpart in England and Wales. That might throw up some issues in terms of donation. Organs can go across boundaries within the UK and we have not heard much about that.

Those are some of my concerns. The Health and Sport Committee has done a tremendous job and I hope that the committee and the Government will listen to those concerns as the bill progresses. At this stage, I agree that the intentions of the bill are good: it tries to achieve what we all want, which is more viable organs going to more people who need them. For that reason, as things stand and at this stage, I am willing to support the general principles of the bill.

16:36  



David Stewart (Highlands and Islands) (Lab)

This has been an excellent debate, with well-informed and thoughtful contributions from across the chamber.

As we have heard from, I think, all members, this is crucial legislation. How do we raise the level of organ donations in Scotland to match the needs of those desperately awaiting transplantation? As we have heard, tragically, 426 patients died in the UK last year while on the transplant list or within one year of removal from it.

We have heard that Scotland has the highest percentage of people on the organ donor register in the UK but the lowest actual rate of organ donation per million people. The key issue is the gap between those who wish to donate organs and the number who go on to join the organ donor register. Around 80 per cent of people support donation but only 52 per cent have signed up to the register. In simplistic terms, the purpose of the bill is to bridge the divide—to encourage those who support organ donation but have not registered to have their wishes respected.

My friend Gary is in his mid-50s and lives in Glenrothes in Fife. Nearly two years ago, he was given the gift of life by a crucially needed heart transplant. Prior to that, he was on the transplant list for 12 months and had a pacemaker. He had been slowly deteriorating, and without the transplant he would have died. When I spoke to Gary at the weekend, he said that he could not praise enough the dedicated support of the medical and nursing staff at the Golden Jubilee national hospital. He said to me, “It was a matter of life or death.”

We know that international evidence and best practice are crucial elements of the principles underpinning the bill. We know from background research by the British Heart Foundation that people living in countries with a soft opt-out are 17 to 29 per cent 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 will be assumed. As we heard from a number of speakers, of the top 10 countries in terms of donors per million, nine have an opt-out system. That brings us to Spain, on which I made a couple of interventions earlier. Spain leads the world league table for organ donations, and we took evidence at the Health and Sport Committee on why Spain is successful. There are three main reasons: it has comprehensive networks of transplant co-ordinators, a donor detection programme and greater provision of intensive care beds. Even if the UK family refusal rate was reduced to a level that was similar to that in Spain—from 40 per cent to 15 per cent—the UK donation rate would still be only half of that which Spain enjoys. Could the minister comment on that in his closing speech?

We should bear it in mind that, as this is not a zero-sum game, we must also concentrate on increasing the number of intensive care beds to allow for the increased numbers of organ donation patients who will require such care.

Although Labour will support the bill, it considers that some issues will be worth further discussion, such as the position of adults with incapacity, on which we heard from Keith Brown, and the variable age of children’s capacity to consent—it is 16 in Scotland and 18 in Wales—which was referred to by many members.

There are issues regarding the rights and obligations that affect decision making on organ donation. As we have heard—this is putting matters in simple terms—the three routes to a decision are opt-in, opt-out and deemed authorisation, which is a passive form of decision. However, as the minister will know, the Law Society of Scotland and others have raised legal questions about those routes, which he might wish to consider.

First, is deemed authorisation consistent with the Supreme Court’s ruling on informed consent in the case of Montgomery v Lanarkshire Health Board? Secondly—this issue is perhaps more important and I am sure that the minister will already have information from his advisers on it—is the bill consistent with the European convention on human rights, and specifically the case of Elberte v Latvia of 2015? For members who are not familiar with that case, tragically, Mrs Elberte’s husband died in a car crash, leaving no record of his wishes on organ donation. However, his tissues were used, and the court later ruled that that was a violation of article 8 of the ECHR. As the minister will know, the bill will have to be deemed consistent with the ECHR before it can gain the Presiding Officer’s approval. What assessment has there been of whether, in practice, medical professionals will take into account the wishes of a donor’s family, irrespective of the provisions of the bill? Should the law cover that? Will transplant units have the capacity to cope with the increase in donations that I mentioned earlier?

I am conscious of the time, so I will conclude by saying that Labour supports the general principles of the bill. However, we have also highlighted areas in which its provisions could be strengthened. I agree with Andrew Tickell of Glasgow Caledonian University, who said, in response to the Scottish Government’s consultation, that

“failure to put the rights of family members and duties of doctors on a statutory footing appears even more problematic”.

Therefore, I strongly suggest that the Scottish Government looks again at the question marks around the bill’s compliance with article 8 of the European convention on human rights.

Notwithstanding that, the bill is a vital piece of legislation that will improve Scotland’s position in the international league table of organ donation and might mean the difference between life and death for the many Scots who are—like my friend Gary once was—desperately in need of life-saving organ donations. As Kahlil Gibran once said:

“You give but little when you give of your possessions. It is when you give of yourself that you truly give.”

16:42  



Brian Whittle (South Scotland) (Con)

I am pleased to have the opportunity to close the debate on behalf of the Conservatives.

As has been mentioned, the debate has been very consensual, which is hardly surprising. It has shown that we all want to increase organ and tissue donation rates. However, a number of questions have been raised.

As has been ably demonstrated by the contributions of members from across the chamber, the bill has instigated much thought and deliberation. Given its aim, which I have just mentioned, members might imagine that it will be commended by most of us, and that its passage will be straightforward and smooth. Consequently, Scottish Conservatives will support it at stage 1. However, in doing so, we must recognise the level of investigation and evidence taking that the Health and Sport Committee has undertaken and the discussion that that initiated among its members. Some issues were revealed then and have been revealed again in today’s debate.

I think that my fellow committee members would agree that in some cases, the evidence that was taken was as comprehensive as it was uncomfortable to hear. Many members, including Miles Briggs, Alison Johnstone and Alex Cole-Hamilton, have mentioned the specialist nurses and their demonstration of how they do their incredible work, in which they acted out an intervention by means of role play. None of us failed to be moved by what we heard in that session. We learned that up to 300 questions can be asked of family members in those incredibly difficult circumstances when they have just lost a loved one.

The minister highlighted that one reason why it is so important to increase organ donation is that only about 1 per cent of people meet their end in a way that means that donation is possible. Maurice Corry reminded us that people who are on an organ waiting list die while waiting for donation, so the bill is incredibly important.

Throughout the Health and Sport Committee’s consideration of the bill, Keith Brown was exercised by the rights of organ donors. He consistently raised that issue and he has done so again today. On the face of it, I agree with Mr Brown that if someone decides to donate their organs, their wishes should be paramount. However, as Miles Briggs highlighted, the wishes of the family will be taken into account and healthcare professionals will not go against those wishes. Because the family has to fill in a questionnaire before organs can be donated, if they do not want to take part in the questionnaire, that will in essence supersede the wishes of the individual. That is a conundrum. I recognise Keith Brown’s campaign to highlight the rights of the deceased, and we will continue to discuss how to get round that issue. One thing that we can do is to encourage discussion among family members long before we get to the stage of donation, so that the donor’s wishes are understood completely by the family.

Dave Stewart raised the situation in Spain and the comparison between it and Scotland. We have to be careful with that, because we are not comparing apples with apples. As he rightly said, Spain has a different system from ours, with intensive care beds in every hospital and therefore a capacity that we currently do not have. In conjunction with the bill, it is important that we consider the capacity in Scotland and how many more donors we can take. There is an idea that presumed consent is a magic bullet, but it will not necessarily increase organ donation in the way that we would like.

I have been exercised quite a lot by the fact that there is a significant difference between actual consent—a stated opt-in—and deemed consent. My view is that we should ensure that the opportunities for people to take the stated position are made widely available. Ensuring awareness of the bill is crucial. It was not until I became a member of the Health and Sport Committee that I was made aware that I was one of the 40 per cent who would donate organs but who have not consented, and it was only because I happened to move house and had to change my driving licence that I got the opportunity to sign up. It is a very simple process that takes seconds. We need to be cognisant of that and ensure that the opportunity is as available as possible.

I want to mention Mark Griffin’s and Anne McTaggart’s personal contribution to the cause. They have both been influential in bringing the debate to the stage that we are now at.

I believe that the bill in itself will not necessarily lead to an increase in organ donation. However, the scrutiny of the bill by the Health and Sport Committee and the subsequent awareness raising will create an environment in which individuals can speak about the issue and consider their situation. It is the Scottish Conservatives’ view that, along with the bill, it is essential that we have a continuing awareness-raising campaign that encourages a clear decision by the 40 per cent of the population who are yet to make their views clear.

It is said that 50 per cent of marketing works, but we are just not sure which 50 per cent. If we raise awareness and encourage people to have such conversations and take a position, and if that ultimately leads to an increase in organ donation, which could save many lives, the bill will have been worth it.

The Deputy Presiding Officer

I call Joe FitzPatrick. Nine minutes or so, minister, will take us up to decision time.

16:49  



Joe FitzPatrick

I thank members for an interesting debate on a complex and sensitive subject. There are differing views on how we get there, but I think that everyone in the chamber is of the view that we want to increase donations. The evidence suggests that there is no one solution to increasing organ and tissue donation, but I am sure that we all agree that it is important that we do what we can—and that we take the initiative to do so.

It is hoped that, over the long term, deemed authorisation will continue to change the culture around support for organ and tissue donation. I thank the Delegated Powers and Law Reform Committee, the Finance and Constitution Committee and, in particular, the Health and Sport Committee for their work in informing the Parliament’s consideration of the bill. I also add my thanks to those of other members to the many organisations that have provided briefings, which we have all found helpful.

I will use my time to pick up on as many of the issues that members raised during the debate as time permits, and I will follow up on others in writing if I do not quite get there. I thank members who raised personal experiences today, which I think is always particularly helpful. Miles Briggs talked about Millie, Mark Griffin made a very moving speech about his father and Emma Harper talked about her experience as a nurse. All those experiences are important in understanding what the bill means to so many people.

Lewis Macdonald talked about the on-going process of culture change and awareness raising around organ and tissue donation, which is important in encouraging more people to support donation. Many members have said that an opt-out system alone is not the answer to making the change; it has to be part of a package of measures—measures that we already have—in order to make a real impact.

Maurice Corry, Emma Harper and Brian Whittle talked about an important point that I think will make a big difference, which is about people making a decision but also discussing that decision with their family. I know that the progress of the bill has taken longer than some members would have liked, but I hope that the process has got more people talking about donation, and talking about it to their families, which will make the donation process easier.

Before I touch on some of the points that I need to respond to, I recognise the important point that Alex Cole-Hamilton made about living donors. I echo the praise that he and Keith Brown, and possibly others, gave to our specialist nurses, who, along with others in the donation and transplantation community, do a fantastic job.

A number of members—Miles Briggs, Alison Johnstone and Keith Brown in particular—talked about the role of families. Families will remain critical to the process in communicating the views of the potential donor and in providing information about them to ensure the safety of organs and tissue for transplantation. Families will also continue to perform an authorisation role in certain circumstances. Any potential donor’s family members would be fully involved in the process.

David Stewart

I reinforce that I support the bill, as the minister knows, but I think that there are issues around article 8 of the European convention on human rights and, in case he has forgotten, I stress again the relevance of the case of Elberte v Latvia in the European Court of Human Rights. I am sure that the minister has his lawyers working on that test case.

Joe FitzPatrick

I need to make progress, but the member raises one of the points that I was going to cover. We are content that the bill is compliant with article 8. There was a specific issue in the Elberte v Latvia case, the outcome of which turned on its own particular facts and circumstances. The issue was the quality of the Latvian organ donation legislation, which gave family members a right to object to donation but provided no mechanism for that right to be given effect to. The case involved a very different set of processes. If we have learned anything from the case, it is that we need to make it clear that the bill is about the rights and the views of the person who would be making the donation. It is an important point and we should learn lessons from other countries, but I am confident that the bill team has learned those lessons.

Keith Brown spent some time talking about his concern that there is, in effect, a family veto in some cases. I make it clear again that authorisation is for the person who makes the donation, but we need to remember that losing a loved one is always a very difficult time for families. The current system deals with the issues sensitively, and that will continue under the new system. The principle behind the proposed system, as with the current system, is to give effect to the donation decision that the person made in life, but we also need to be mindful that donation happens at a distressing time for the family, so it is right that clinicians are able to respond to that.

Sandra White talked about pre-death procedures, and we discussed with the committee whether there is a better term. However, it is important that our transplant system be transparent, and the term “pre-death procedures” describes what those procedures are about. The inclusion of those provisions in the bill means that it not only sets out a framework for carrying out the procedures that will be able to respond to change but brings transparency to the donation process by letting people know what they are agreeing to. We have made it clear that, if there are changes to the process, we will come back to the Parliament for them to be approved under the affirmative procedure.

A large number of members, including Lewis Macdonald, Alison Johnstone, Emma Harper, Kenneth Gibson and, I am sure, others, talked about the need for awareness raising, as did the committee. The Government is clear that that is an important part of taking the matter forward. Indeed, it is essential if a soft opt-out system is to work. As was set out in the consultation, the intention is to have a high-profile awareness-raising campaign over at least 12 months before the introduction of the new system and regular campaigns after implementation in order to maintain awareness. That is a crucial part of the safeguards that will underpin the system, which are aimed at ensuring that people will not become donors if that is not what they want, and that they will become donors if that is what they want. We will work with a range of groups, including disability groups and faith groups, to research, develop and test clear and accessible information, which will always be available in a range of languages.

Alex Cole-Hamilton talked about support for families, which is a very important subject. NHS National Services Scotland is reviewing the provision of psychological support across all our nationally commissioned specialist services, including organ transplantation, to ensure that appropriate provision is in place, and the Scottish Government understands that the review will be completed later this year.

Alex Cole-Hamilton

Will the minister take an intervention?

Joe FitzPatrick

I apologise, but I have to make progress in order to respect other members who took part in the debate.

Miles Briggs and David Stewart talked about infrastructure. The 2008 UK organ donation task force report considered the introduction of an opt-out system but prioritised improvements in infrastructure as it was considered that they would have the greatest impact on donation at that time. Throughout the task force’s work and the subsequent Scottish plan, we have seen significant developments around donation and transplantation infrastructure over the decade. However, I recognise—as I recognised in my response to the committee—that there is an on-going commitment to supporting measures, including infrastructure, to increase donation.

I move on to a point that was raised by Mr Rumbles in particular, and I think by Maurice Corry, too. We are satisfied that the wording in the bill is not overly burdensome, but I am happy to discuss that further with Mr Rumbles to make sure that I fully understand his point. I hope that, with officials, I will be able to allay his concerns. I offer a serious discussion to make sure that we all understand what the bill is trying to do. The approach in the bill is broadly similar to that in the legislation in Wales, and we are not aware of the issues that Mr Rumbles is concerned about arising there. As we have heard, our specialist nurses are highly skilled in having conversations with families and the provisions largely mirror the current practice around conversations exploring a loved one’s views with family members. As that is taken forward, guidance will be produced by NHSBT and the Scottish National Blood Transfusion Service, but I am keen to have that discussion with Mr Rumbles.

I acknowledge and thank the Scottish donation and transplant group, which advises the Scottish Government on donation transplantation matters, for its assistance in the development of the bill. I again pay tribute to everyone who has contributed to the debate today, everyone who has donated in the past and every family that has supported those donations. Through such selfless acts, lives are saved and improved. I hope that the bill will lead to further increases in donation to save more lives, and I offer any such progress as a tribute to all those who have donated in the past.

Members have raised several issues during the debate. I will respond in writing to members whose issues I have not managed to cover. If members want to discuss particular issues to ensure that the most robust bill goes through stage 2 and into stage 3, I will be happy to have those discussions. I thank all colleagues for taking part in what I think is a very important debate.

Financial resolution

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Financial resolution transcript

The Presiding Officer

The next item of business is consideration of S5M-15594, on the financial resolution for the Human Tissue (Authorisation) (Scotland) Bill.

Motion moved,

That the Parliament, for the purposes of any Act of the Scottish Parliament resulting from the Human Tissue (Authorisation) (Scotland) Bill, agrees to any expenditure of a kind referred to in Rule 9.12.3(b) of the Parliament’s Standing Orders arising in consequence of the Act.—[Derek Mackay]

Vote at Stage 1

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Vote at Stage 1 transcript 

The Presiding Officer

The first question is, that motion S5M-16001, in the name of Joe FitzPatrick, on the Human Tissue (Authorisation) (Scotland) Bill, be agreed to. Are we agreed?

Members: No.

The Presiding Officer

There will be a division.

For

Yousaf, Humza (Glasgow Pollok) (SNP)
Wightman, Andy (Lothian) (Green)
Whittle, Brian (South Scotland) (Con)
White, Sandra (Glasgow Kelvin) (SNP)
Wheelhouse, Paul (South Scotland) (SNP)
Wells, Annie (Glasgow) (Con)
Watt, Maureen (Aberdeen South and North Kincardine) (SNP)
Torrance, David (Kirkcaldy) (SNP)
Tomkins, Adam (Glasgow) (Con)
Todd, Maree (Highlands and Islands) (SNP)
Sturgeon, Nicola (Glasgow Southside) (SNP)
Stewart, Kevin (Aberdeen Central) (SNP)
Stewart, David (Highlands and Islands) (Lab)
Stewart, Alexander (Mid Scotland and Fife) (Con)
Stevenson, Stewart (Banffshire and Buchan Coast) (SNP)
Somerville, Shirley-Anne (Dunfermline) (SNP)
Smyth, Colin (South Scotland) (Lab)
Smith, Liz (Mid Scotland and Fife) (Con)
Simpson, Graham (Central Scotland) (Con)
Scott, John (Ayr) (Con)
Sarwar, Anas (Glasgow) (Lab)
Russell, Michael (Argyll and Bute) (SNP)
Ruskell, Mark (Mid Scotland and Fife) (Green)
Ross, Gail (Caithness, Sutherland and Ross) (SNP)
Robison, Shona (Dundee City East) (SNP)
Rennie, Willie (North East Fife) (LD)
Paterson, Gil (Clydebank and Milngavie) (SNP)
Neil, Alex (Airdrie and Shotts) (SNP)
Mountain, Edward (Highlands and Islands) (Con)
Mitchell, Margaret (Central Scotland) (Con)
McMillan, Stuart (Greenock and Inverclyde) (SNP)
McKelvie, Christina (Hamilton, Larkhall and Stonehouse) (SNP)
McKee, Ivan (Glasgow Provan) (SNP)
McDonald, Mark (Aberdeen Donside) (Ind)
McArthur, Liam (Orkney Islands) (LD)
McAlpine, Joan (South Scotland) (SNP)
Matheson, Michael (Falkirk West) (SNP)
Mason, Tom (North East Scotland) (Con)
Mason, John (Glasgow Shettleston) (SNP)
Martin, Gillian (Aberdeenshire East) (SNP)
Macpherson, Ben (Edinburgh Northern and Leith) (SNP)
Mackay, Rona (Strathkelvin and Bearsden) (SNP)
Mackay, Derek (Renfrewshire North and West) (SNP)
MacGregor, Fulton (Coatbridge and Chryston) (SNP)
Macdonald, Lewis (North East Scotland) (Lab)
MacDonald, Gordon (Edinburgh Pentlands) (SNP)
MacDonald, Angus (Falkirk East) (SNP)
Lyle, Richard (Uddingston and Bellshill) (SNP)
Lockhart, Dean (Mid Scotland and Fife) (Con)
Lochhead, Richard (Moray) (SNP)
Leonard, Richard (Central Scotland) (Lab)
Lennon, Monica (Central Scotland) (Lab)
Lamont, Johann (Glasgow) (Lab)
Kidd, Bill (Glasgow Anniesland) (SNP)
Kerr, Liam (North East Scotland) (Con)
Kelly, James (Glasgow) (Lab)
Johnstone, Alison (Lothian) (Green)
Johnson, Daniel (Edinburgh Southern) (Lab)
Hepburn, Jamie (Cumbernauld and Kilsyth) (SNP)
Harvie, Patrick (Glasgow) (Green)
Harris, Alison (Central Scotland) (Con)
Harper, Emma (South Scotland) (SNP)
Hamilton, Rachael (Ettrick, Roxburgh and Berwickshire) (Con)
Halcro Johnston, Jamie (Highlands and Islands) (Con)
Griffin, Mark (Central Scotland) (Lab)
Greer, Ross (West Scotland) (Green)
Gray, Iain (East Lothian) (Lab)
Grant, Rhoda (Highlands and Islands) (Lab)
Gougeon, Mairi (Angus North and Mearns) (SNP)
Golden, Maurice (West Scotland) (Con)
Gilruth, Jenny (Mid Fife and Glenrothes) (SNP)
Gibson, Kenneth (Cunninghame North) (SNP)
Freeman, Jeane (Carrick, Cumnock and Doon Valley) (SNP)
Fraser, Murdo (Mid Scotland and Fife) (Con)
FitzPatrick, Joe (Dundee City West) (SNP)
Finnie, John (Highlands and Islands) (Green)
Findlay, Neil (Lothian) (Lab)
Fee, Mary (West Scotland) (Lab)
Fabiani, Linda (East Kilbride) (SNP)
Ewing, Fergus (Inverness and Nairn) (SNP)
Ewing, Annabelle (Cowdenbeath) (SNP)
Dugdale, Kezia (Lothian) (Lab)
Doris, Bob (Glasgow Maryhill and Springburn) (SNP)
Dey, Graeme (Angus South) (SNP)
Denham, Ash (Edinburgh Eastern) (SNP)
Cunningham, Roseanna (Perthshire South and Kinross-shire) (SNP)
Crawford, Bruce (Stirling) (SNP)
Corry, Maurice (West Scotland) (Con)
Constance, Angela (Almond Valley) (SNP)
Cole-Hamilton, Alex (Edinburgh Western) (LD)
Coffey, Willie (Kilmarnock and Irvine Valley) (SNP)
Chapman, Peter (North East Scotland) (Con)
Carson, Finlay (Galloway and West Dumfries) (Con)
Carlaw, Jackson (Eastwood) (Con)
Campbell, Aileen (Clydesdale) (SNP)
Cameron, Donald (Highlands and Islands) (Con)
Burnett, Alexander (Aberdeenshire West) (Con)
Brown, Keith (Clackmannanshire and Dunblane) (SNP)
Briggs, Miles (Lothian) (Con)
Bowman, Bill (North East Scotland) (Con)
Ballantyne, Michelle (South Scotland) (Con)
Baker, Claire (Mid Scotland and Fife) (Lab)
Baillie, Jackie (Dumbarton) (Lab)
Arthur, Tom (Renfrewshire South) (SNP)
Allan, Alasdair (Na h-Eileanan an Iar) (SNP)
Adamson, Clare (Motherwell and Wishaw) (SNP)
Adam, George (Paisley) (SNP)

Against

Rumbles, Mike (North East Scotland) (LD)

Abstentions

Grahame, Christine (Midlothian South, Tweeddale and Lauderdale) (SNP)
Beattie, Colin (Midlothian North and Musselburgh) (SNP)

The Presiding Officer

The result of the division is: For 107, Against 1, Abstentions 2.

Motion agreed to,

That the Parliament agrees to the general principles of the Human Tissue (Authorisation) (Scotland) Bill.

The Presiding Officer

The final question is, that motion S5M-15594, in the name of Derek Mackay, on the financial resolution for the Human Tissue (Authorisation) (Scotland) Bill, be agreed to.

Motion agreed to,

That the Parliament, for the purposes of any Act of the Scottish Parliament resulting from the Human Tissue (Authorisation) (Scotland) Bill, agrees to any expenditure of a kind referred to in Rule 9.12.3(b) of the Parliament’s Standing Orders arising in consequence of the Act.

The Presiding Officer

That concludes decision time. We will take a few moments before the next item of business to allow members and ministers to change seats.

MSPs agreed that this Bill could continue

Stage 2 - Changes to detail 

MSPs can propose changes to the Bill. The changes are considered and then voted on by the committee. 

Changes to the Bill

MSPs can propose changes to a Bill  these are called 'amendments'. The changes are considered then voted on by the lead committee.

The lists of proposed changes are known as a 'marshalled list'. There's a separate list for each week that the committee is looking at proposed changes.

The 'groupings' document groups amendments together based on their subject matter. It shows the order in which the amendments will be debated by the committee and in the Chamber. This is to avoid repetition in the debates.

How is it decided whether the changes go into the Bill?

When MSPs want to make a change to a Bill, they propose an 'amendment'. This sets out the changes they want to make to a specific part of the Bill.

The group of MSPs that is examining the Bill (lead committee) votes on whether it thinks each amendment should be accepted or not.

Depending on the number of amendments, this can be done during one or more meetings.

First meeting on changes

Documents with the changes considered at the meeting held on 7 May 2019:

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First meeting on changes transcript

The Convener

Item 3 is stage 2 consideration of the Human Tissue (Authorisation) (Scotland) Bill. I welcome the Minister for Public Health, Sport and Wellbeing, Joe FitzPatrick.

The Minister for Public Health, Sport and Wellbeing (Joe FitzPatrick)

Good morning.

The Convener

Good morning.

The minister is accompanied by Sharon Grant of the Scottish Government bill team; Jackie Pantony and Claire Montgomery from the Scottish Government legal directorate; and Max McGill from the parliamentary counsel office. I understand that members of the team will come and go according to the particular items that we are discussing. I also welcome Jeremy Balfour, who has lodged amendments to the bill. I believe that Gordon Lindhurst will join us later this morning to speak to amendments that he has lodged.

I will briefly explain the procedure, as this is our first consideration of the bill at stage 2.

There will be one debate on each group of amendments. I will call the member who lodged the first amendment in the group to speak to and move that amendment and to speak to all the other amendments in the group. I will then call any other members who have lodged amendments in the group. Other members may, of course, catch my eye and indicate their intention to speak to the group of amendments. If the minister has not already spoken to the group of amendments, I will invite him to contribute to the debate before I ask the member who moved the amendment to wind up. The debate on the group will be concluded by my inviting the member who moved the first amendment in the group to wind up.

Following the debate on each group, I will ask whether the member who moved the first amendment in the group wishes to press it to a vote or to withdraw it. If they wish to press it, I will put the question on the amendment.

If a member wishes to withdraw their amendment after it has been moved, they must seek the agreement of other members to do so. Any member present may object and therefore require a vote on the amendment.

If a member does not move their amendment, any other member may move it. Failing that, I will move on to the next amendment on the marshalled list.

Voting is by members of the committee only, and voting on any division is by a show of hands. If there are divisions, members should indicate their intention clearly and for long enough that their vote can be recorded.

We move directly to consideration of the bill at stage 2. If we are successful in completing stage 2 today, it would clearly be a good thing. If we are not successful in completing stage 2 today, the bill will be reprinted first thing tomorrow morning and further amendments can be lodged. However, let us press on.

Section 1 agreed to.

Section 2—Information and awareness about authorisation of transplantation and about pre-death procedures

The Convener

The first group of amendments to the bill covers information and awareness. Amendment 4, in the name of Jeremy Balfour, is grouped with amendments 56, 57, 7, 8 and 63.

Members should note that amendments 7 and 8 are direct alternatives to each other. That means that both can be decided on and, if both were agreed to, the last one that was agreed to would apply. Clearly, that is a matter for members to consider when they come to it.

Jeremy Balfour (Lothian) (Con)

Thank you, convener, and good morning to the committee and the minister. I start by saying that this is a very helpful bill, which I think has all-party support. The amendments that I will put forward this morning seek to strengthen the bill and make it work better.

The key amendment that I am putting forward is amendment 4, which relates to the issue of informed consent. I hope that a positive of the bill will be that it will kick-start a debate in Scotland on organ donation, so that families and individuals will be able to have better conversations, meaning that, when someone is dead, the family is better informed.

The evidence from Wales has been positive. Before the bill that became the Human Transplantation (Wales) Act 2013 was introduced, public awareness in Wales was fairly low. Since then, it has greatly increased, which is very positive. I am aware that the Scottish Government has committed to putting in a lot of resource when this bill becomes an act, so that there will be advertising and suchlike, including on the television. However, the question is how we keep the conversation going over the next five to 10 years. There is a danger that there will be a high take-up initially, when people understand that it is going on, but that it becomes less well known as other issues come on to our agenda and things move on.

If we are to have informed consent, it has to be genuinely informed. People who are 16 or older now will be part of the awareness campaign. However, people who are behind that group in years may not be aware of what is going on. Amendment 4 would simply commit the Scottish Government to ensuring that there is some kind of communication with people in Scotland every two years. I do not suggest that it has to be an individual letter to each person. It could work well if the communication went out with other communication, such as council tax letters or other forms, on a two-yearly basis, so that people would be aware.

The advantage of that would be that it would allow the debate to continue over the next four, five or 10 years. It would also mean that those who are turning 16 would be aware of it. It will be a number of years before those who are eight, 10 or 11 years old at the moment reach that time—will they be informed about the decisions that they are being asked to make?

I would be interested to know the views of the Scottish Government and the committee on the matter. A key part of the bill relates to informed consent, and we need to ensure that there is informed consent not only now but in the future.

As the convener said, amendments 7 and 8 are direct alternatives, which would give either a two-year or a three-year option. The amendments relate to people who come not from the United Kingdom but from Europe or other parts of the world. At the moment, there is a period of one year before a person from a different jurisdiction enters the system. Again, my concern relates to informed consent. If someone pitches up from Australia, will the issue come on to their radar within the first 12 months of their being in Scotland? I am not convinced that it will.

I accept that the Welsh have gone for a 12-month period, and I think that the legislation for England includes the same period, but we do not need to follow suit. We need to be comfortable in ourselves that there is deemed authorisation that comes from individuals giving informed consent. I suggest that a slightly longer period than one year is required for an individual to know what is going on and to be able to have the appropriate conversations with his or her relatives in other parts of the world.

I move amendment 4.

The Convener

I have lodged two amendments in the group, following discussions, particularly with the Law Society of Scotland, on the most appropriate format for addressing the issues, including those that Jeremy Balfour has raised.

Amendment 56 would ensure that the duty to promote information and awareness is continuous and that ministers should promote awareness at least on an annual basis. Amendment 63 would amend the bill to provide for a two-year information and awareness period before the commencement of the provisions in the bill. The amendments are linked, but they need not be agreed to together. They are intended to achieve the same objective: to allow for an adequate level of information and awareness in advance of the bill’s implementation.

David Stewart (Highlands and Islands) (Lab)

I thank the minister for meeting me to discuss the generalities of the amendments. Like Jeremy Balfour, the Labour Party and I are very supportive of the bill’s general principles, but there are opportunities to strengthen the bill through amendments.

Amendment 57 would add to section 3, which concerns the maintenance of the register. At stage 1, it was clear to the committee that the success of the bill in achieving an increase in the number of organ donations would rest on individuals making clear that their wishes were explicit. Therefore, amendment 57 seeks to make the process easier and more commonplace. It would place an obligation on the Scottish ministers and the maintainers of the register to consider and “promote regular opportunities” for individuals to make clear their intentions regarding the donation of their organs or to alter their stated wishes in that regard.

Proposed new section 2E(2) of the Human Tissue (Scotland) Act 2006 would require the Scottish ministers to consider how such opportunities could be made available through the existing interactions that individuals have with the national health service and other health services. Such interactions could include, but would not be exclusive to, the times when an individual registers with a general practitioner or attends clinical appointments. When individuals are asked to confirm their details by the NHS, the information should include confirmation of their wishes regarding organ donation.

Although I am sympathetic to the intention behind amendment 4 and the need to inform the public of changes that the bill will make, I believe the amendment to be too resource intensive. I am also concerned that the link to the electoral register would allow people who are not registered to fall through the gaps. There would be possible practical problems relating to people who do not wish their address to be used for purposes other than voter registration. I consider amendment 56 to be a better alternative, which satisfies the intention behind amendment 4 but which could be delivered more efficiently and does not limit the potential audience who might be reached.

Alex Cole-Hamilton (Edinburgh Western) (LD)

I welcome Jeremy Balfour to the committee and thank him for moving amendment 4. Although I support the intent of amendment 4, I agree with David Stewart that it would be resource intensive and would potentially miss out key vulnerable people in our society. Also, I think that it would be counterproductive to attach something as positive as information about organ donation to a council tax demand or similar. The amendment in the convener’s name, and annual publicity or media buy-in from the Scottish Government, might lend an air of celebration to what is and should be a very positive development in public policy.

I will not support the amendments in the name of Jeremy Balfour, but I will support the amendments from the convener and David Stewart.

10:15  



Emma Harper (South Scotland) (SNP)

Good morning, everyone. I thank Jeremy Balfour for lodging his amendments.

As I am a former liver transplant nurse who has also taken part in kidney and pancreas transplants, my input might be different from that of other members. I absolutely support the idea that we need to raise awareness about informed consent, presumed consent and opting in and out, and I am keen to ensure that we raise awareness with schools and encourage conversations to occur within families.

I agree with Alex Cole-Hamilton and David Stewart that it would be resource intensive to implement the process suggested by amendment 4. However, I would be interested to hear from the minister how we would monitor engagement, uptake and whether people were adding their names to the organ donation register. In Spain, they do not even have an organ donation register, because it has become the norm for people to donate their organs and tissue.

I am keen to support the Government’s amendments on this issue.

Miles Briggs (Lothian) (Con)

Good morning. I welcome my colleague Jeremy Balfour.

I suppose that my question is more for the minister, because it relates to the guidance that will be attached to the bill. Where is the direction of travel for public information on the bill? I completely accept the aim of amendment 4, but a letter may be limiting. What will the public information campaign be, as we move towards far more digitalisation of health information?

Sandra White (Glasgow Kelvin) (SNP)

I thank Jeremy Balfour for his amendment, but I agree with David Stewart and Alex Cole-Hamilton about the convener’s amendment. Once a year is better than once every two years.

I have some concerns about amendments 7 and 8, in the name of Jeremy Balfour. Changing the period before consent can be given from 12 months to two or three years would be concerning for people involved in organ transplants.

I wonder whether amendment 57, in the name of David Stewart, would cause extra work. I presume that people can say whether they wish their name to be on the register or taken off it, and there might be a bit of duplication there. Perhaps the minister can clarify that point, and Jeremy Balfour can clarify my points on amendments 7 and 8.

Joe FitzPatrick

Agreement to amendment 56 would mean that, as part of their duties in respect of transplantation and donation, the Scottish ministers should have a campaign of awareness raising and information at least once every calendar year.

Amendment 57 would set a duty on the Scottish ministers to promote regular opportunities for persons to make, or to review, their decision to donate or not to donate, and to consider how such opportunities can be provided when a person is receiving healthcare services. Under the Human Tissue (Scotland) Act 2006, Scottish ministers have a duty to promote information and awareness about donation for transplantation. Proposed new section 1(d) of the 2006 act—as set out in section 2 of the bill—will add to that by requiring Scottish ministers to promote information and awareness about how authorisation for transplantation may be given, including deemed authorisation. Awareness raising that is carried out in accordance with the duty will make it clear to people what their choices are, and what the implications of the new system will be.

One of the strengths of the Human Tissue (Scotland) Act 2006 has been the duty on Scottish ministers to promote awareness and information about donation. As a result of the importance that has been placed on that by successive Administrations, and of the evidence-based approach to awareness raising, efforts to fulfil the duty have resulted in high public awareness of donation, which is demonstrated by year-on-year increases in people recording their decisions on the organ donation register.

The duty is fulfilled in a range of ways—from specific initiatives being targeted at various groups of the population, to high-profile media campaigns. Awareness raising is on-going and includes promotion at public sporting or entertainment events, and information being provided in general practitioner surgeries, pharmacies and other public places, which is similar to what David Stewart calls for in amendment 57. In addition, information is given through various media activities, including on social media, that happen regularly throughout the year. We will build on that as we raise awareness about the opt-out system.

As well as broad awareness raising, it is crucial that we undertake work to reach specific groups. We are committed to working with different groups including disability and faith groups, and to research, develop and test clear and accessible information, which will be available in a range of languages. I know that the committee has made a number of helpful suggestions in that regard.

We are also committed to learning from Wales about its engagement strategy—in particular, regarding reaching minority groups. Officials are also in regular dialogue with English counterparts about developments there. We will continue to work with Kidney Research UK, which will provide updated training for peer educators in order to raise awareness of donation among south Asian communities.

Specific work will target young people—I think that that point was made by Jeremy Balfour. We will update the secondary schools education pack; as we did previously, we will work with Education Scotland to do that. We are also looking to identify ways to inform young people of the law shortly before they reach their 16th birthday, and to continue to keep them informed on an on-going basis. The bill’s financial memorandum takes that into account.

Our intention, which is backed up by the new duty in section 2, is that regular awareness raising about the opt-out system will be a priority, so opportunities will continue to be taken to promote information and understanding of the opt-out system and the choices under it. That will be supported by monitoring of changes in public attitudes—which was mentioned by Emma Harper—and awareness, as part of the planned evaluation of the opt-out system, which means that we can be responsive, if there is a need to adopt that approach.

I support the principles of amendment 56 to have an awareness and information campaign at least once every calendar year, so I am happy to recommend that it be agreed to. However, given the crossover between the provisions in the bill and the amendment, I think that it would be preferable to refine the text at stage 3. I will be happy to work with Lewis Macdonald before stage 3 in order to achieve that.

I thank David Stewart for lodging amendment 57. I hope that I have been able to provide reassurance about our continuing commitment to use every opportunity to raise awareness—in particular, about the new system. I consider that the duties in the bill and on-going practice already meet the intentions of the amendment, so I ask him not to move amendment 57.

In light of the fact that I hope to have discussions with the convener in relation to amendment 56, I will also be happy to meet David Stewart, to ensure that any refinement of the text takes into account his points and anything that is missed by the committee not passing amendment 57.

Amendment 4 would require Scottish ministers to send information at least once in every two-year period to persons who are registered on the electoral roll. In light of the intended awareness raising and the general approach that I have outlined, although I appreciate the aim of the amendment, I consider it to be too limiting. Even if the law allowed access to the electoral register for that purpose—I understand that it does not—the information would not reach people who had decided not to include their details on the electoral roll, as has been mentioned.

In addition, the proposal in amendment 4 would have a high cost—estimated, at current rates, at about £2.5 million every two years—and would have the effect of reducing the ability of the Scottish ministers to raise awareness in other ways. The awareness-raising work that we undertake is based on evidence of what works best. I do not want inadvertently to limit us by being required to use specific awareness-raising methods that might not be the most effective ones. I reassure Mr Balfour that, as well as the awareness-raising methods that I outlined, there will be a direct mailing to all households within a 12-month period, which will mean that even those who are not on the electoral roll will have access to the information. That is accounted for in the financial memorandum. On that basis, I ask Jeremy Balfour to consider seeking to withdraw amendment 4.

Amendments 7 and 8 are direct alternatives that would increase to two or three years the time that a person need ordinarily be resident in Scotland before deemed authorisation for transplantation would apply. I appreciate that Mr Balfour is concerned that people who are newly resident in Scotland might be subject to deemed authorisation when they are not aware of the system. When developing the bill, a key consideration was the need for the protection of certain groups of people who might not be aware of or understand “deemed authorisation”. The “ordinarily resident” requirement is part of those protections, and the required duration of 12 months is in line with the legislation in Wales and England, as Mr Balfour said.

Establishment of what length of time spent living in Scotland is sufficient before deemed authorisation will apply requires that a balance be struck. Mr Balfour’s amendments 7 and 8 seek to lengthen the period to either two or three years. The proposal in the Transplantation (Authorisation of Removal of Organs etc) (Scotland) Bill, which was introduced by Anne McTaggart in the previous parliamentary session, was six months. The Health and Sport Committee at that time considered that to be an insufficient period and recommended that it be increased to 12 months. I appreciate and accept that there are differing views on what is appropriate, but I am not persuaded that the duration should be increased from 12 months. A 12-month residency requirement has been in place in Wales since 2015 and we are not aware that difficulties have arisen from the approach there.

Additionally, the bill contains safeguards that aim to ensure that donation does not proceed when that would be against the potential donor’s wishes. The safeguards include awareness-raising duties to ensure that there is public awareness of the implications of the new system, and of the duty to inquire, which applies in all cases and seeks to ensure that the views of the potential donor will establish whether donation is authorised. I hope that the information on awareness raising that I have already outlined provides assurance on that point.

For people who are newly resident, we are looking at what has been undertaken in Wales, which uses various channels for awareness raising, including new GP registrations, universities, estate agents and major employers. Such activity would supplement the broader on-going awareness-raising campaign.

I hope that that provides reassurance that the system will include sufficient safeguards alongside the awareness-raising work and that, therefore, the requirement for residency of a duration of 12 months should be retained. On that basis, I ask Mr Balfour not to move amendments 7 and 8. If they are moved, I urge members to resist them.

Finally, amendment 63 would prevent the opt-out system from being implemented before a two-year awareness-raising period has passed, which would begin from royal assent. We have always been clear that there needs to be a high-profile public information campaign over at least 12 months before commencement of the system, so I was pleased that the committee welcomed that commitment in its stage 1 report. The approach was also proposed in the Scottish Government’s consultation, and attracted significant support.

I understand that there is in the Welsh legislation a similar requirement to what is proposed in amendment 63. However, there has been more exposure of the opt-out system since then. There have been many conversations in Scotland over the past few years about the introduction of opt-out, including in this Parliament. Most recently, an awareness-raising campaign, which will run for 12 months, was embarked on in England.

I reassure members that, although we have committed to an awareness-raising campaign of at least 12 months before the introduction of the opt-out, that is not limiting. I am grateful to Lewis Macdonald for taking the time to discuss his amendment 63 with me, and I am happy to give the assurance that, in addition to the 12-month campaign, we intend to provide information about the move to the new system in a variety of ways, which will start as soon as the bill receives royal assent.

As I said, I am pleased that the committee welcomes the Government commitment to having a high-profile awareness-raising campaign. I am satisfied that the awareness-raising duties in the bill, along with the commitments that the Scottish Government has made, including to raise awareness over a period of at least 12 months, support the bill’s aims and will ensure that people are aware of the new system and their choices within it.

Although I agree that awareness raising is needed, I hope that members will agree with me that the balance is right, given the additional assurances that I have given today, so I ask Lewis Macdonald not to move amendment 63. If he moves it, I ask that members reject it.

10:30  



The Convener

Thank you, minister. I ask Jeremy Balfour to wind up and to press or seek to withdraw his amendment 4.

Jeremy Balfour

I thank members for the helpful debate that we have had. The comments by the minister were particularly helpful. I offer a slight caveat to the minister’s view: I am not sure that the public are as aware as he suggested, so that needs work.

Agreement to amendment 65 would achieve more than I sought to do, so I am willing to seek to withdraw amendment 4, and I ask the committee to support amendment 56 and to make the commitment it contains. I will not move either amendment 7 or amendment 8. However, I ask the minister to find out what particular information is given, when they visit a GP, to people who arrive in the country from abroad. Most people will probably register with a GP within a year of arrival, so it would be of some comfort if they could be given an appropriate letter or information when they do.

I also ask the minister to reflect, before we get to stage 3, on whether a letter could go to every 16-year-old, as part of a pack that they get when they leave school. That would not add any extra cost and might start the debate within school, as well as beyond it.

With your permission, convener, I seek to withdraw amendment 4, and will not move amendments 7 and 8.

The Convener

We will come back to amendments 7 and 8 in due course.

Amendment 4, by agreement, withdrawn.

Amendment 56 moved—[Lewis Macdonald]—and agreed to.

Section 2, as amended, agreed to.

Section 3—Establishment and maintenance of register

The Convener

The next group is on excepted body parts. Amendment 5, in the name of Jeremy Balfour, is grouped with amendment 6, amendments 9 to 17 and amendments 19 to 23.

I call Jeremy Balfour to move amendment 5 and speak to all the amendments in the group.

Jeremy Balfour

Amendment 5 would ensure that tissue is not used to create reproductive cells in research. It highlights the fact that while everyone believes that the bill is talking about organ transfers, which we are obviously all very keen to see, there is also the matter of tissue and how it could be used. I am open to the minister’s comments on the matter, but my understanding is that currently the bill would allow different body tissue to be taken and used for research into reproductive cells, artificial sperm or eggs, or the creation of human embryos. That goes beyond what most people understand the bill to contain, and there is an ethical difference between working on those types of tissue and a kidney or heart transplant, for example. What is the minister’s understanding of the intention of the bill? Do the Government, and this committee, believe that, ethically, that is the direction that we want to move in?

The other amendments in the group all deal with the difference between non-exempt body parts and exempt body parts. My understanding is that such terminology is not found in any of the other acts in Wales or the rest of the world. Again, I hope for a correction of that distinction. There should be no difference between excepted and non-excepted body parts.

As far as I am concerned, we should be encouraging people to use all parts of their body for transplantation. Again, I want to understand where the Government is coming from by drawing up these two different lists. As I understand it, that is not what happens in Wales, and I am interested to know why the Government thinks that it should happen in Scotland.

I move amendment 5.

Emma Harper

I am interested in this, because from discussions that we have had, it seems that the issue is transplantation of not just solid organs but tissue. It is quite common for tissue such as tendons and heart valves to be transplanted, but there are people who can freak out when face transplants and so on are mentioned. That sort of thing does not really happen in this country, but research and development of that kind continue to happen, and I am aware that other types of organ transplants are being trialled such as uterus transplants in Wales. For me, there are issues around pancreas transplants and obtaining islet cells.

We must give people time to engage with and come to an understanding of what is meant by organ and tissue. Most folk understand about common transplants of solid organs such as hearts, lungs, livers and kidneys, but the distinction that is being made here is, I think, warranted to ensure that we do not restrict the transplantation of other tissue and that we do not end up with people not opting in because they are afraid of what meaning of tissue might be applied to them or their families.

The Convener

As no one else wishes to contribute, I invite the minister to respond to this group of amendments.

Joe FitzPatrick

The amendments would remove a protection from the bill. The bill as introduced includes an exemption to ensure that deemed authorisation does not apply to excepted body parts and includes provision for regulations to be made to specify what is included in the excepted body parts category. Those regulations will be subject to affirmative procedure as well as to consultation.

The intention, as outlined in the Scottish Government’s consultation, is for deemed authorisation to apply only to those organs and tissues that are commonly transplanted. They are, in other words, the organs and tissues that most people might commonly understand as being able to be donated and include the kidney, heart, lungs and liver. The intention is for body parts aside from those commonly transplanted ones—in other words, the excepted body parts—to be listed in regulations and, as a result, to be exempt from deemed authorisation. That approach has been taken elsewhere; indeed, there are regulations as part of the Welsh legislation that set out that list. As well as that exemption, deemed authorisation will apply only to transplantation, not to research—again, that comes back to a point that Mr Balfour made—and no body parts can be used for research purposes without explicit authorisation.

Amendments 9 and 10 seek to remove the category of excepted body parts and instead set out protections only for parts of the body that contain “reproductive cells” or which are

“to be used for reproductive purposes”.

The effect would be that those parts of the body that it is intended would be excepted could be removed and transplanted under deemed authorisation.

I point out to Mr Balfour that I am very much a supporter of organ donation and, indeed, have opted in to make it clear that I am content for all of my body parts to be used after my death, if I die in such circumstances that they can be used. However, the bill does not assume that that would be covered by deemed authorisation, if the organ in question is not one of those accepted as commonly transplanted. There is a slight difference in that respect, and I think that it highlights how the organ donor register remains important in this legislation.

As I have said, there is a list in Wales, and it includes body parts such as the face and hands. I do not think that it is commonly understood by the public that such parts of the body would be donated and transplanted, and it is appropriate that we provide safeguards to make the limitations of deemed authorisation clear to the public.

I understand Mr Balfour’s concerns with regard to reproductive cells and body parts to which deemed authorisation for transplantation does not apply. As I have said, the Government’s intention is to ensure that only material that the public commonly understand to be routinely donated should be part of deemed authorisation, and I do not think that the material that the amendments relate to would fall within that. The list in Wales includes the types of material that the amendments relate to, such as the ovaries, uterus, penis and testicles. Subject to consultation and the Parliament’s view, it is expected that the list of excepted body parts here will be very similar.

I suggest that the excepted body parts regulations are the vehicle to limit the parameters of what can be donated under deemed authorisation. On that basis, I urge Jeremy Balfour to withdraw amendment 5 and not to move the other amendments in the group.

Mr Balfour asked how reproductive cells will be covered under the bill. The procurement, storage and use of gametes, or reproductive cells, are dealt with under the Human Fertilisation and Embryology Act 1990 and require a Human Fertilisation and Embryology Authority licence. That is completely separate from the 2006 act and the bill.

The Convener

I ask Jeremy Balfour to wind up and say whether he wishes to press or to seek to withdraw amendment 5.

Jeremy Balfour

I have nothing to add, convener. I seek to withdraw amendment 5.

Amendment 5, by agreement, withdrawn.

The Convener

The next group relates to the establishment and maintenance of the register. Amendment 24, in the name of the minister, is grouped with amendments 25 to 33.

Joe FitzPatrick

I have lodged amendments 24 to 33 following further consideration of how the provisions of section 3 on disclosure of information by the register organisation will work in practice. The amendments aim to reflect more accurately whom information needs to be shared with; to clarify that the information that is disclosed must be about a particular potential donor; and to refine the purposes for which information can be shared.

Proposed new section 2C(1)(a) of the 2006 act, as will be inserted by amendment 25, will restrict the powers of the register organisation to disclose information within Scotland to those carrying out functions under part 1 of the 2006 act. New section 2C(1)(b), which is also set out in amendment 25, provides a power for the register organisation to disclose information to persons outwith Scotland who are carrying out functions related to the removal and use of parts of the body for transplantation. The power to disclose information outwith Scotland reflects the collaborative arrangements with which donation and transplantation services operate. New section 2C(1)(a) will allow information to be shared within Scotland by the register organisation with those listed under section 2C(2) for particular purposes but no longer directly with relatives of donors.

In practice, there is a need for the register organisation to disclose information only to specific persons who are engaged in functions related to the removal and use of a part of the body for transplantation. Therefore, amendment 27 reflects that by replacing the existing reference to health boards and so on with a reference to those persons.

Amendment 26 makes it clear that the register organisation’s power to disclose information includes the power to disclose that there is no recorded information on the register. Within Scotland, that will support those undertaking the duty to inquire and will, for example, allow specialist nurses to have conversations with the family about the views of the donor.

Amendments 28 and 29 have the effect that those who are listed in section 2C(2) can disclose information that they receive from the register organisation to another person carrying out transplantation functions under part 1 of the 2006 act as well as to relatives of the donor. In practice, that will, for example, allow a specialist nurse for organ donation to share information with a retrieval surgeon that an authorisation for donation is in place so that, among other things, the retrieval surgeon can be satisfied that the requirements in section 11 of the 2006 act are fulfilled before retrieval takes place.

Amendments 30 to 33 are consequential.

I move amendment 24.

Amendment 24 agreed to.

Amendments 25 to 33 moved—[Joe FitzPatrick]—and agreed to.

Amendment 57 moved—[David Stewart].

The Convener

The question is, that amendment 57 be agreed to. Are we agreed?

Members: No.

The Convener

There will be a division.

For

Whittle, Brian (South Scotland) (Con)
Stewart, David (Highlands and Islands) (Lab)
Macdonald, Lewis (North East Scotland) (Lab)
Cole-Hamilton, Alex (Edinburgh Western) (LD)
Briggs, Miles (Lothian) (Con)

Against

White, Sandra (Glasgow Kelvin) (SNP)
Torrance, David (Kirkcaldy) (SNP)
Harper, Emma (South Scotland) (SNP)
Adam, George (Paisley) (SNP)

The Convener

The result of the division is: For 5, Against 4, Abstentions 0.

Amendment 57 agreed to.

Section 3, as amended, agreed to.

Section 4 agreed to.

Section 5—Express authorisation by adult

10:45  



The Convener

The next group is on how authorisation, declaration or withdrawal is to be made. Amendment 34, in the name of the minister, is grouped with amendments 36, 40 and 42.

Joe FitzPatrick

I will speak to all the amendments in the group. They seek to enable a person to verbally withdraw a decision that they have given to the register organisation. At present, in Scotland, a person can withdraw their donation decision only in writing. When contacting the organ donor register helpline to withdraw a donation decision, individuals in Scotland are advised that it can be done only in writing, either by changing their decision online on the organ donor register, or by writing to the organ donor register requesting the change.

Amendments 34, 36, 40 and 42 will provide flexibility as to how a person can withdraw a previously recorded decision from the register and bring Scotland into line with practice in the rest of the United Kingdom. NHS Blood and Transplant has welcomed the fact that the amendments will mean that callers from Scotland to the organ donor register helpline will not require to be directed away from the call centre to withdraw decisions online or separately in writing. As a matter of good practice, any withdrawal of a recorded decision is followed up by the organ donor register in writing, as confirmation.

I move amendment 34.

The Convener

Thank you. I invite other members to comment.

Miles Briggs

I seek clarity about how a verbal withdrawal will be logged or recorded. Can the minister provide more information on the procedure for someone to verbally withdraw consent?

The Convener

The minister may respond now, or once we have heard from other members, if any of them wish to comment.

Sandra White

I have a small comment on an issue that I raised during the debate on amendment 57, which I thought duplicated this. It is important that people have the opportunity to say whether they wish to continue and amendment 34 fills that gap, so I support it.

The Convener

I concur that it will be a useful improvement to the bill. I am interested to hear the minister’s comments as he winds up.

Joe FitzPatrick

To respond to Mr Briggs’s point, the change will bring us in line with practice in the rest of the UK. I understand that the procedure there is for a person to telephone the ODR, which then verifies their ID and follows up the call in writing. The ODR holds the register for the whole of the UK, but currently it has the two different systems—one for the rest of the UK and one for people from Scotland, who are diverted away to do things differently. The amendments will mean that there will be one system for the whole of the UK.

The Convener

Have there been issues with the different methods in use under the current legislation, or is the change a precaution against a possible issue arising in the future?

Joe FitzPatrick

I am told that NHS Blood and Transplant will be very pleased if the amendment is agreed to. Currently, if someone from Scotland telephones to say that they have decided to change their registered view to opt in or out, they are turned away, and members of the public are often not happy when they are told that they cannot do what everybody else can.

Amendment 34 agreed to.

The Convener

The next group is on the standard of evidence. Amendment 35, in the name of the minister, is grouped with amendments 37, 58, 59, 38, 60, 61, 39, 41 and 43.

Joe FitzPatrick

I note Mr Rumbles’s interest in the standard of evidence. When we met to discuss the amendments that he intended to lodge on that point, we found that we shared the aim of ensuring that authorisation for transplantation is not deemed when it would be against the potential donor’s wishes. Safeguards that are included in the bill aim to achieve that.

The Government agreed to look further at whether we could amend the test that is in the bill, in order to address Mr Rumbles’s concerns. Amendment 38 will amend the test; I am pleased that we have reached agreement and I am grateful that, on that basis, Mr Rumbles will not lodge amendments.

Amendment 38 relates to the test to displace deemed authorisation for transplantation. The amendment will ensure that a person must provide evidence to a health worker that would

“lead a reasonable person to conclude”

that the potential donor would have been unwilling to donate. That evidence will be about the potential donor’s most recent view. The revised test will also apply in establishing whether a potential donor would have been unwilling to donate in the circumstances—perhaps because, in the particular circumstances of death, donation would be incompatible with their faith.

The formulation that evidence would

“lead a reasonable person to conclude”

will apply instead of the existing threshold in the bill, which requires evidence that

“would convince a reasonable person”.

When we met, Mr Rumbles expressed concern about the word “convince”, and I am glad to address his concern. The change to the word “conclude” rather than “convince” is also in line with the wording in legislation in England and Wales.

As a consequence of amendment 38, amendments 35, 41, 37 and 43 will replicate the test that evidence would

“lead a reasonable person to conclude”

when an adult or a child who is aged 12 or over has expressed authority for or opted out of donation. That will change the test for the evidence that is required to show that a potential donor had changed their previous decision or to show that, in the circumstances, they would have changed their mind if they were capable of doing so. The test will be replicated in those contexts to reflect the intention that deemed authorisation should have equal status with other decisions and to avoid operational confusion from the application of different tests in different scenarios.

I reassure the committee that, as with the previous test, the new test is designed to enable in all circumstances evidence about a potential donor’s views to be provided and to enable their views to determine whether donation is authorised. The test is robust enough to ensure that donation will proceed only when it would not have been against a potential donor’s wishes, and the test has been designed with the kind of decisions that take place with families by the bedside in mind.

Operationally, evidence will most frequently come from a family telling a specialist nurse for organ donation or tissue donor co-ordinator about conversations that they had had about donation and the views that their loved one had expressed. However, the test is flexible enough to enable any evidence to be provided.

In addition to the test to establish views on donation, a revised test will apply to establishing incapacity. Amendment 39 will amend the

“example of when an adult is to be considered ‘incapable of understanding the nature and consequences of deemed authorisation’”

in proposed new section 6D(4) of the 2006 act. Under new section 6D(2)(b), deemed authorisation will not apply when someone is considered to be so incapable. In practice, a specialist nurse or tissue donor co-ordinator will seek to establish whether a potential donor had the capacity to understand deemed authorisation. Staff who have been caring for a patient are likely to be aware of whether they lacked capacity, but a potential donor’s family member could also provide evidence of incapacity.

Although evidence is not required to establish incapacity, the example in the bill will make it clear that, when evidence is presented, it should

“lead a reasonable person to conclude”

that the potential donor was incapable of understanding the nature and consequences of authorisation.

A great deal of consideration has been given to the tests that are set out in the bill to ensure both that information can be submitted to respect a potential donor’s wishes and that there are sufficient safeguards for those who are incapable of understanding the nature and consequences of deemed authorisation. I confirm that NHSBT and the Scottish National Blood Transfusion Service were consulted and are content with the bill’s approach to those issues and with the associated amendments. I accordingly ask members to support them.

I turn to amendments 58 to 61, which I am unable to support because they undermine the very principle of an opt-out system. Authorisation for donation for transplantation is able to be deemed in the context of the Scottish ministers’ duties to raise awareness about the new system. If an adult is made aware of how the system operates, and such operation is by means of deemed authorisation, we consider it reasonable to assume that they are willing to donate unless they opt out. We recognise that that assumption may be displaced in ways other than by opt-out declaration. If a person’s most recent view is that they are unwilling to donate, that should also be given effect. That is the reason for the safeguards in the bill, which ensure that evidence about an adult’s latest views can be submitted.

Importantly, the bill provides that evidence of an adult’s unwillingness to donate can be submitted by a wide range of people, to ensure that relevant information is not excluded from consideration. However, amendment 59 restricts the provision of evidence to the adult’s nearest relative, which reduces the likelihood that relevant information will be produced. Taken together, the amendments would mean that deemed authorisation would apply only if a person’s nearest relative provides evidence that that person is willing to donate. It destroys the basis on which deemed authorisation operates, because there is no assumption of willingness; instead, willingness must be demonstrated by the nearest relative.

Crucially, amendments 58 to 61 could risk the progress that we have seen happen under the 2006 act. Currently, under section 7 of the 2006 act, which would be repealed by the bill, if an adult has not authorised donation, their nearest relative may authorise it upon their death, unless that relative has actual knowledge that the adult was unwilling to donate, which is the opposite test to what the amendments propose. Part of the reason for introducing an opt-out system is that we know that many more people support donation than register their willingness to donate. That is why we want to move to a system of deemed authorisation, which makes donation the default position.

The Scottish Government hopes that the provisions relating to deemed authorisation, together with raising awareness of the new system, will contribute towards the on-going improvements that we have seen in donation rates. However, amendments 58 to 61 would damage that progress and undermine the efforts of those who are working in the system to increase donation. I therefore urge members to resist them.

I move amendment 35.

The Convener

I welcome Gordon Lindhurst to the meeting and invite him to speak to amendment 58 and other amendments in the group.

Gordon Lindhurst (Lothian) (Con)

I have heard what the minister has had to say on amendments 58 to 61. Nevertheless, I would like to set out the reasoning behind them.

Amendments 58 to 61 relate to the formulation of the consent principle. Rather than that principle being expressed in a negative way—or, indeed, as a double negative, as it is set out in the bill—the amendments seek to express it in a positive way. That is in keeping with modern best practice, as is set out in the European convention on human rights and biomedicine, which is numbered 164 in the European treaty series; and its additional protocol concerning transplantation of organs and tissues of human origin, which is numbered 186. The simplest way to illustrate the point is to consider one of the most up-to-date European regulations: the general data protection regulation, which requires conscious affirmative consent to be given in relation to personal data, rather than the previously allowed passive consent.

As amendment 58 is a probing amendment, it has been drafted in relation to only one section. If it were to be agreed to, further amendments would be lodged at stage 3 in relation to the wording that is intended to be amended where appropriate in the rest of the bill.

Mike Rumbles (North East Scotland) (LD)

This set of amendments from the minister is all about the potential donor’s wishes and the safeguards that are in the bill to ensure that they are carried out.

I was pleased to withdraw on Friday the amendments that I had lodged, because we reached agreement with the minister on this point. We both want to do the right thing.

My background is that I have been on the organ donor register for the past 20 years. A campaign on the issue was the first that I was involved in after being elected to the Scottish Parliament. I was on a previous Health Committee that spent many months taking the Human Tissue (Scotland) Act 2006 through—the convener was the minister at the time.

11:00  



I support this bill, except for the phrase

“convince a reasonable person”,

which is a particular standard of law that is used in many bills. I think that the legal team may have put the phrase in the bill. Amendment 38 is key, with the minister’s other amendments setting the rest of the bill as a result of amendment 38.

I voted against the bill at stage 1 because I was worried that the word “convince” was unintentionally putting in a barrier to the success of the bill—when I met the minister, it was clear that it was unintentional—and that there might be a problem further down the line.

The minister’s amendment uses the phrase,

“lead a reasonable person to conclude”,

and I am pleased that the minister listened to and accepted the arguments. We all want to achieve the right thing with the bill. I hope that the committee will unanimously support the minister’s amendments in the group.

The Convener

A reasonable person would conclude that Mr Rumbles supports the amendments. [Laughter.] As no other members wish to comment on the amendments in this group, I ask the minister to wind up.

Joe FitzPatrick

The principle behind the bill is to respect the primacy of the views of the potential donor. Safeguards are in the bill to ensure that it is the donor’s view that establishes whether donation is authorised.

Against the backdrop of the move to a soft opt-out system and the awareness raising that will take place, it is entirely appropriate to set the default in favour of donation when an adult has not opted out. The safeguards in place are a check to make sure that donation would not go ahead against the donor’s wishes. That is the appropriate balance, and the Government’s amendments have sought to address concerns about that. I urge members to support amendments 35, 37 to 39, 41 and 43 and to resist amendments 58 to 61.

Amendment 35 agreed to.

Section 5, as amended, agreed to.

Section 6—Opt-out declaration by adult

Amendments 36 and 37 moved—[Joe FitzPatrick]—and agreed to.

Amendment 6 not moved.

Section 6, as amended, agreed to.

Section 7—Deemed authorisation for transplantation as respects adult

Amendments 7 to 11 not moved.

The Convener

I call Gordon Lindhurst’s amendment 58, which has already been debated with amendment 35. Do you wish to move your amendments?

Gordon Lindhurst

I am not sure that the minister has responded to my point, but I will not move the amendments.

Amendments 58 and 59 not moved.

Amendment 38 moved—[Joe FitzPatrick]—and agreed to.

Amendments 60 and 61 not moved.

Amendment 39 moved—[Joe FitzPatrick]—and agreed to.

Amendment 12 not moved.

Section 7, as amended, agreed to.

Sections 8 and 9 agreed to.

Section 10—Excepted body parts: authorisation for transplantation by nearest relative

Amendment 13 not moved.

Section 10 agreed to.

Section 11 agreed to.

Section 12—Authorisation by child 12 years of age or over

Amendments 40 and 41 moved—[Joe FitzPatrick]—and agreed to.

Section 12, as amended, agreed to.

Section 13—Opt-out declaration by child 12 years of age or over

Amendments 42 and 43 moved—[Joe FitzPatrick]—and agreed to.

Section 13, as amended, agreed to.

Sections 14 to 20 agreed to.

Section 21—Removal of part of body of deceased person: further requirements

The Convener

We move to the next group. Amendment 44, in the name of the minister, is grouped with amendments 45 to 49.

Joe FitzPatrick

I lodged amendments 44 to 49 following an approach from the Scottish National Blood Transfusion Service, which is responsible for tissue retrieval. SNBTS is seeking the opportunity to amend section 21, which amends section 11 of the Human Tissue (Scotland) Act 2006 and concerns the requirements that must be satisfied before retrieval takes place.

The amendments in the group are intended to amend sections 11(1) to 11(4) of the 2006 act, to clarify the role of the registered medical practitioner in cases in which another person has been authorised to retrieve tissue. The amendments will allow SNBTS to operate more effectively and to be responsive to practice development.

Section 11(1) of the 2006 act provides that removal of a body part for transplantation must be undertaken by a “registered medical practitioner” or someone who is

“authorised to do so in accordance with regulations”.

Regulations can provide that a registered medical practitioner may authorise removal by a non-practitioner; current regulations provide that a registered medical practitioner may authorise any person, provided that they are satisfied that the person who will undertake retrieval is sufficiently qualified and trained to perform the operation competently.

Amendments 44 and 45 and 47 to 49 will amend section 11 to make it clear that the body parts of a deceased person may be removed by a person who is authorised to do so under a general authorisation made in accordance with regulations, and to enable the regulations to make provision for general authorisations for a “description of person”.

Amendment 44 will also remove section 11(3)(b) from the 2006 act, which implies that authorisation must be given in individual cases, to ensure that only the person who proposes to remove the body parts is required to be satisfied that the requirements of section 11(4) are met.

Amendment 46 will amend section 11(4)(a) of the 2006 act so that where the person who proposes to remove a body part from a donor is a registered medical practitioner, that person may examine the donor’s body to confirm that the donor is deceased or satisfy themselves that another registered medical practitioner has examined the donor’s body to confirm that the donor is deceased.

Amendment 46 will also add new paragraph (ab) to section 11(4) of the 2006 act so that where the person who proposes to remove a body part from a donor is not a registered medical practitioner, that person must satisfy themselves that a registered medical practitioner has examined the donor’s body to confirm that the donor is deceased.

I ask the committee to agree to amendments 44 to 49, which will allow the SNBTS to continue to respond effectively to increases in tissue retrieval.

I move amendment 44.

Sandra White

I fully support the minister, but I would like clarification on amendment 46. It says:

“if the person is not a registered medical practitioner, that a registered medical practitioner, by personal examination of the body, is satisfied that life is extinct”.

The person in question does not have to be a registered medical practitioner. I presume that the body would be examined first, and there would be paper authorisation from a registered medical practitioner. I would like a wee bit of clarification on amendment 46.

Joe FitzPatrick

The point that I made was that the person who is removing the organ needs to be satisfied that a registered medical practitioner has examined the donor’s body to confirm that the donor is deceased. That could happen in the hospital, for example. It is about confirming that that will be done and ensuring that the bill works in practice.

Sandra White

That satisfies me. Thank you for the clarification.

Amendment 44 agreed to.

Amendments 45 and 46 moved—[Joe FitzPatrick]—and agreed to.

Amendment 14 not moved.

Amendments 47 and 48 moved—[Joe FitzPatrick]—and agreed to.

Amendment 15 not moved.

Amendment 49 moved—[Joe FitzPatrick]—and agreed to.

Amendment 16 not moved.

Section 21, as amended, agreed to.

Section 22—Pre-death procedures relating to transplantation

The Convener

The next group of amendments is on pre-death procedures relating to transplantation. Amendment 50, in the name of the minister, is grouped with amendments 51 and 18.

Joe FitzPatrick

Amendments 50 and 51 will make minor amendments to the provisions in the bill relating to pre-death procedures. They are aimed at ensuring that the provisions will work effectively when they are applied in practice.

The provisions in the bill that support the carrying out of pre-death procedures are robust and provide a clear legal framework by specifying the circumstances in which they may be carried out and in which they may be authorised. Transparency is important to that, and amendment 50 will enable the procedures that may be specified as “Type A” to be described more accurately by making it clear that they may also be described by reference to how they are carried out. The ability to specify the procedures in regulations will also ensure that the statutory framework is responsive to changes in practice and particularly to developments in medical practice and care. The minor change that amendment 50 will introduce to the enabling power will further enhance that.

11:15  



Amendment 51 also seeks to make it clearer how the system is intended to work in practice. As the committee is aware, pre-death procedures are not new; those that are currently carried out include taking blood and X-rays, and it is not intended that, for example, a radiographer who is asked to take an X-ray will have to be involved in the authorisation process or to carry out the duty to inquire. Amendment 51 makes that clear, while also retaining the important safeguards in the bill, including that the procedures cannot be carried out if it is known that the person is unwilling for that to happen. I hope that members share my aim to ensure that the bill works in practice, and I invite them to support the amendments.

On amendment 18, I understand Mr Balfour’s concerns about pre-death procedures not bringing about the premature death of a potential donor. As I have said, the provisions in the bill that support the carrying out of pre-death procedures are robust and include significant safeguards with regard to how and when they can be carried out. Importantly, they should not be carried out if they are

“likely to cause more than minimal discomfort”

or harm

“to the person”,

and I believe that not shortening someone’s life expectancy would be captured in that requirement not to harm people.

Equally important is that the bill also explicitly provides that procedures can be carried out only if, in the view of those responsible for the patient’s care, “the person” in question

“is likely to die imminently”

and, where “life-sustaining treatment” is being administered, a decision has been taken to withdraw that treatment. That provision takes account of the very specific context in which such procedures are carried out; they happen in a very narrow window at the end of a patient’s life, when they are being cared for by medical professionals with family involvement in discussions about care and end-of-life procedures.

As I am satisfied that the bill includes significant safeguards, I am not persuaded of the need for amendment 18. I hope that I have provided sufficient reassurance and therefore invite Jeremy Balfour not to move amendment 18.

I move amendment 50.

Jeremy Balfour

First, I want to say that I support amendments 50 and 51 in the name of the minister.

Amendment 18 will put down in law what we all hope should happen, but it will also give individuals who decide to opt in an absolute guarantee that they will be treated no differently from those who have not opted in. That will happen anyway, but the amendment sets it out as a legal requirement. I do not think that it will take anything away from what the minister has proposed in amendments 50 and 51 or, I hope, make any difference in practice to what medical teams do. In the past, a concern was expressed about people being treated slightly differently according to whether or not they were on the donor list, and amendment 18 will simply clarify that that will not be the case. It is a safeguard that will assure people about putting themselves on to the list, which is, after all, what we want them to do.

Emma Harper

Having worked on both the donation and recipient sides of transplantation, I can say that the situation in question is really difficult. In my professional working life, I have never seen anyone wish to hurry someone’s death so that we could get them to an organ donation site or operating theatre. I therefore think that, given current healthcare practice across Scotland, amendment 18, though well intended, is not required.

Sandra White

I thank the minister for lodging his amendments, given that I have been raising this particular matter from the beginning of our scrutiny. As a layperson, I did not know a lot about pre-death procedures. After meeting people whose loved ones had passed away and hearing about what happened and the information that they received, I was comforted, but I still wanted to raise the issue. I therefore thank the minister for the proposal with regard to type A procedures and for ensuring that there will be transparency for the families involved. My concern was always about people not knowing a lot about what was happening.

I understand why Jeremy Balfour has lodged amendment 18. It is probably just a probing amendment that might well not be moved—although I cannot speak for Jeremy in that respect—but I have to say that I am very pleased with amendments 50 and 51.

Joe FitzPatrick

As I said earlier, the bill sets out provisions for pre-death procedures that are robust, transparent and responsive to change, with the important aim that they work in practice. Amendments 50 and 51 are minor changes that add more to that. I invite the committee to support them.

Safeguards are important, and the provisions in the bill for pre-death procedures have been carefully developed to ensure that they recognise the particular circumstances in which they are carried out. People will be under the care of health professionals who work within an ethical framework and for whom patient care is a priority.

The bill provides that procedures may be carried out only if necessary and only if they are not likely to cause any harm. I am satisfied that that addresses Jeremy Balfour’s concerns; I therefore urge the committee to reject amendment 18.

Amendment 50 agreed to.

Amendment 51 moved—[Joe FitzPatrick]—and agreed to.

Amendment 17 not moved.

Amendment 18 moved—[Jeremy Balfour].

The Convener

The question is, that amendment 18 be agreed to. Are we agreed?

Members: No.

The Convener

It seems clear that there are no votes in favour of amendment 18. However, to be absolutely clear, we had better have a vote. There will be a division.

Against

Whittle, Brian (South Scotland) (Con)
White, Sandra (Glasgow Kelvin) (SNP)
Torrance, David (Kirkcaldy) (SNP)
Stewart, David (Highlands and Islands) (Lab)
Macdonald, Lewis (North East Scotland) (Lab)
Harper, Emma (South Scotland) (SNP)
Cole-Hamilton, Alex (Edinburgh Western) (LD)
Briggs, Miles (Lothian) (Con)
Adam, George (Paisley) (SNP)

The Convener

The result of the division is: For 0, Against 9, Abstentions 0.

Amendment 18 disagreed to.

Section 22, as amended, agreed to.

Section 23—Duty to inquire

The Convener

The next group relates to the meaning of the term “health worker”. Amendment 52, in the name of Joe FitzPatrick, is grouped with amendments 53 and 54.

Joe FitzPatrick

Amendments 52 to 54 seek to change the definition of “health worker” in the bill. Following the bill’s introduction, and after speaking to key people who deliver donation and transplantation services, we have reviewed how the current definition of “health worker” in the bill will work in practice and are of the view that these amendments are necessary.

For it to work properly in practice, there needs to be more flexibility in the definition of “health worker” in the bill. The definition should apply consistently to those who might be involved in the authorisation process and those who might carry out inquiries into the wishes of potential donors, which is likely to be the same person. The definition is also relevant to pre-death procedures, as other people who work in healthcare—who are not registered medical practitioners or registered nurses—might be involved. For example, radiographers who carry out X-rays would not be covered by the current definition.

Our view is that the amendment achieves the appropriate level of flexibility by enabling “health workers” to include not only clinicians or nurses, but others who are suitably qualified. We also think that it is precise enough to maintain appropriate restrictions as to who can fulfil the health worker role in the different contexts in which it applies. The additional power for ministers to issue directions means that it also includes adequate safeguards to maintain the integrity of the process.

As we all know, practice and procedures develop all the time. We are mindful that the system has to work in practice, and our view is that the amendments are responsive enough to allow for further developments in procedures and practice. I therefore ask members to support amendments 52 to 54.

I move amendment 52.

Amendment 52 agreed to.

Section 23, as amended, agreed to.

Sections 24 and 25 agreed to.

Section 26—Interpretation

Amendment 53 moved—[Joe FitzPatrick]—and agreed to.

The Convener

Before we proceed, I suspend the meeting to give Jeremy Balfour a moment to return. I understand that he will be back with us any second.

11:25 Meeting suspended.  



11:26 On resuming—  



Amendment 19 not moved.

Amendment 54 moved—[Joe FitzPatrick]—and agreed to.

Section 26, as amended, agreed to.

Section 27—Minor and consequential modifications

Amendments 20 to 23 not moved.

Section 27 agreed to.

After section 27

The Convener

Amendment 62, in my name, is in a group on its own.

Again, the amendment follows discussions and reflects the experience elsewhere. It would insert a new section—headed “Review and report on operation of Act”—which would place an obligation on ministers to research and report on the impact of the provisions in order to determine the efficacy of the legislation. It imposes a duty to undertake a review and report back to Parliament.

A similar exercise was carried out in Wales, where the evaluation was published in December 2017. However, that was done so close to the legislation in Wales coming into effect that the evidence of the benefits did not appear in the evaluation. Committee members will recall that we heard that in the 12 months following the publication of that evaluation, evidence began to come through of an increase in donations. Amendment 62 is designed to ensure that there is an adequate period before a review takes place and calls for that to happen five years from when the bill is given royal assent.

I move amendment 62.

Alex Cole-Hamilton

I seek clarification, convener. Although I am generally in favour of reviewing the impact of legislation, I am concerned that doing so might open the door for the bill, if enacted, to be repealed or its provisions overturned. The bill is much needed, and I want to check the motivations behind your amendment and ask for assurances that you do not imagine that that would happen.

The Convener

I am happy to do that, and will have the opportunity to do so in a moment.

Emma Harper

I agree that, if we want to increase the number of people who donate, we should be able to review whether the legislation is working, including in relation to how many people opt out.

Joe FitzPatrick

I support amendment 62. I am content that it is not a so-called sunset clause and, on that basis, I am happy to recommend that it be accepted. However, I think that it would be preferable for the start of the period to begin not on the date of royal assent but on the date of the opt-out system’s introduction. I suggest that change on the basis of the experience of the Welsh Government’s evaluation, which concluded that two years of data were not enough to give an indication of the early impact of system. Five years after the system’s introduction feels like the right length of time. I would be happy to work with the convener before stage 3 to achieve that.

11:30  



The Convener

I thank the minister for that suggestion, which is much appreciated. I am likewise happy to work with him, as we will in relation to amendment 56, which we discussed earlier. I hope that Alex Cole-Hamilton will agree with the minister that there is no intention—or route—for amendment 62 to become a sunset clause. The intention is simply to ensure that there is a review.

Alex Cole-Hamilton

With that clarification, I am happy to support the amendment.

Amendment 62 agreed to.

Section 28—Commencement

The Convener

Amendment 55, in the name of the minister, is in a group on its own.

Joe FitzPatrick

Amendment 55 seeks to remove references to certain sections of the bill from section 28, so that those sections are not commenced on the day after royal assent.

Following the bill’s introduction and our engagement with stakeholders, including NHSBT and SNBTS, we have reviewed the approach in the bill. We consider that amendment 55 is necessary to ensure that there is sufficient time for guidance to be produced and training to be provided, so that the pre-death procedures and timing of authorisation provisions can be implemented successfully, and those working in the system are able to adhere to the new legislative framework. Further, following the introduction of the bill, sequencing issues were also identified that make amendment 55 necessary.

Before the pre-death procedures regime can be fully implemented, the regulations specifying the procedures need to be in place. Commencing the provisions for the regime before that process is complete would be unworkable. If we did that, the regime would be in place but the procedures would not be specified and so could not be carried out. In addition, the duty to raise awareness of pre-death procedures cannot be met if the procedures are not yet specified.

It is the Scottish Government’s intention instead to commence those provisions and the remaining provisions in the bill by commencement regulations. As set out in the public consultation and the bill’s accompanying documents, the intention is to carry out awareness raising over a period of at least 12 months following the introduction of the opt-out system. As I have said, a period of at least 12 months for awareness raising is appropriate, given the increased debate about opt-out, and people’s exposure to the issue, across the UK since such a regime was introduced in Wales in 2015. More recently, the start of the 12-month awareness-raising period in England will inevitably have some reach in Scotland.

I move amendment 55.

Amendment 55 agreed to.

Amendment 63 not moved.

Section 28, as amended, agreed to.

Section 29—Short title

The Convener

Amendment 64, in my name, is in a group on its own.

The amendment reflects discussion with the Law Society on the short title. Clearly, the bill amends the Human Tissue (Scotland) Act 2006 and therefore the short title should start with “Human Tissue”, as it does. There is currently no reference in the short title to transplantation. Given that, in newspaper and other public comment, it is the short title that is referred to, I suggest that amendment 64 would improve clarity and allow the use of the bill’s title itself as a means of raising awareness of its content.

I move amendment 64.

Joe FitzPatrick

I am grateful to the convener for his attention to the detail of the bill, but I will resist amendment 64, which seeks to amend the short title.

We take care in selecting bill titles to ensure that they meet the Presiding Officer’s recommendation that they should accurately and neutrally reflect what the bill does. We considered adding a reference to transplantation to the short title during the development of the legislation. However, such a reference was not added because it was felt that it would potentially mislead readers, who might then think that the bill was about transplantation only. The short title reflects the fact that the bill is also about authorisation of donation for other purposes, not only transplantation. That is further reflected in the long title, which sets out that the bill is about authorisation

“for transplantation and other purposes”.

It seems to me that transplantation is given sufficient prominence in the long title.

The bill makes significant changes to authorisation for transplantation by introducing deemed authorisation for that purpose, but it also ensures that authorisation for other important uses—such as research, education, training, audit and quality assurance—will require express authorisation from a potential donor or by their nearest relative. The current short title acknowledges that point.

Therefore, although I understand why Mr Macdonald has raised the issue, I ask him to consider not pressing amendment 64.

The Convener

In the light of the minister’s comments, I am minded not to press amendment 64. Of course, members will be able to revisit the issue at stage 3.

Amendment 64, by agreement, withdrawn.

Section 29 agreed to.

Long title agreed to.

The Convener

That completes stage 2 consideration of the bill. I thank the minister and his team, as well as members and non-members of the committee, for their attendance. The bill will now be reprinted, as amended at stage 2. Members will be informed when a date has been selected by which amendments can be lodged for stage 3.

11:36 Meeting continued in private until 11:53.  



Additional related information from the Scottish Government on the Bill

More information on the powers the Scottish Parliament is giving Scottish Ministers to make secondary legislation related to this Bill (Supplementary Delegated Powers Memorandum)

Stage 3 - Final changes and vote

MSPs can propose further changes to the Bill and then vote on each of these. Finally, they vote on whether the Bill should become law.

Debate on the proposed changes

MSPs get the chance to present their proposed changes to the Chamber. They vote on whether each change should be added to the Bill.

Documents with the changes considered in the Chamber on 11 June 2019:

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Debate on the proposed changes transcript 

The Presiding Officer (Ken Macintosh)

The next item of business is stage 3 of the Human Tissue (Authorisation) (Scotland) Bill. In dealing with the bill, members should have with them the bill, as amended at stage 2, the marshalled list and the groupings of amendments.

Should there be a vote this afternoon, the division bell will sound and proceedings will be suspended for five minutes for the first division of the afternoon. The period of voting for the first division will be 30 seconds. Thereafter, there will be one minute for the first division after a debate.

Members who wish to speak in the debate on any group of amendments should press their request-to-speak buttons as soon as possible after I call the group.

Section 2—Information and awareness about authorisation of transplantation and about pre-death procedures

The Presiding Officer

Amendment 1, in the name of the minister, is grouped with amendment 2.

The Minister for Public Health, Sport and Wellbeing (Joe FitzPatrick)

I thank Lewis Macdonald and David Stewart for lodging stage 2 amendments that related to the duties of the Scottish ministers to provide information and raise awareness about authorisation for transplantation. Amendment 1 draws together the overall intentions of the amendments that Mr Macdonald and Mr Stewart lodged at stage 2 by setting out how ministers are to carry out their new duty under the new section 1(1)(d) of the Human Tissue (Scotland) Act 2006. That provision places a duty on the Scottish ministers to promote information and awareness of how transplantation may be authorised, including, in particular, how authorisation for transplantation may be deemed to be given.

The effect of amendment 1 will be that the duty must be carried out at least once in every calendar year. It will also mean that, when the duty is exercised, the Scottish ministers must have regard to the need to provide information to the public about how authorisation of transplantation might be deemed to be given and how to give an express authorisation or to make an opt-out declaration. The amendment makes it clear that the Scottish ministers must have regard to the need to provide that information in healthcare settings, which could include providing information in general practitioner surgeries or in hospital waiting areas, in line with the intention of Mr Stewart’s stage 2 amendment.

Amendment 2 is consequential on amendment 1, and I ask members to support amendments 1 and 2.

I move amendment 1.

Lewis Macdonald (North East Scotland) (Lab)

I welcome the minister’s amendment 1, which fulfils his commitment to refine the text of amendments that were agreed to by the Health and Sport Committee at stage 2. I also welcome his willingness to seek agreement on the area. As he said, amendment 2 is consequential on amendment 1.

My amendment at stage 2 was to commit ministers to an annual campaign to raise awareness of both deemed and express authorisation and opting out. David Stewart’s amendment was to commit the national health service to communicating with patients about authorisation and opting out. I am glad that the minister has engaged with Mr Stewart and myself on those matters and that his two amendments deliver on the commitment that he gave at stage 2. I therefore look forward to supporting both of the amendments in the group.

Amendment 1 agreed to.

Section 3—Establishment and maintenance of register

Amendment 2 moved—[Joe FitzPatrick]—and agreed to.

After section 11

The Presiding Officer

Amendment 3, in the name of Lewis Macdonald, is grouped with amendment 4.

Lewis Macdonald

The purpose of amendment 3 is to require ministers to review and report on the new system of authorisation five years after it comes into force, which includes conducting a review of the Government’s actions to raise awareness of the changes under the bill in general. The Health and Sport Committee unanimously agreed that approach in supporting an amendment in my name at stage 2. Amendment 3 refines the approach, and amendment 4 is consequential.

I am grateful to the minister for working with me on the amendments, which I believe deliver the shared purpose of the Government and the Health and Sport Committee. Amendment 3 provides that ministers must review both the new arrangements for deemed authorisation and their own actions to promote information and awareness about the revised system of organ donation. The report must say whether the objectives of the bill have been met and whether family members have had the support that they need. That will allow ministers and the Parliament to make a judgment, five years after implementation, about whether the bill that is before us today has made the difference that we hope it will, and, if it has not, about what more needs to be done.

I move amendment 3.

Joe FitzPatrick

I support amendments 3 and 4, which were lodged by Lewis Macdonald. I thank him for working with the Scottish Government to ensure that the proposals align with the overall aim of the bill.

Amendment 3 agreed to.

Section 27A—Review and report on operation of Act

Amendment 4 moved—[Lewis Macdonald]—and agreed to.

The Presiding Officer

Members will be delighted to hear that that concludes the consideration of amendments.

As members will be aware, at this point in the proceedings I am required under the standing orders to decide whether, in my view, any provision of the bill relates to a protected subject matter—that is, whether it modifies the electoral system and franchise for Scottish parliamentary elections. In my view, it does no such thing; therefore, the bill does not require a supermajority at stage 3.

Final debate on the Bill

Once they've debated the changes, the MSPs discuss the final version of the Bill.

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Final debate on the Bill

The Presiding Officer (Ken Macintosh)

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  



The Minister for Public Health, Sport and Wellbeing (Joe FitzPatrick)

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  



Miles Briggs (Lothian) (Con)

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  



David Stewart (Highlands and Islands) (Lab)

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.”

The Presiding Officer

I call Alison Johnstone to close—I mean to open—for the Scottish Green Party.

16:17  



Alison Johnstone (Lothian) (Green)

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  



Alex Cole-Hamilton (Edinburgh Western) (LD)

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.

The Deputy Presiding Officer (Linda Fabiani)

We now move to the open debate. I ask for speeches of four minutes.

16:26  



Emma Harper (South Scotland) (SNP)

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  



Lewis Macdonald (North East Scotland) (Lab)

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  



Kenneth Gibson (Cunninghame North) (SNP)

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  



Mike Rumbles (North East Scotland) (LD)

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.

Keith Brown (Clackmannanshire and Dunblane) (SNP)

Will the member give way?

Mike Rumbles

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  



Christine Grahame (Midlothian South, Tweeddale and Lauderdale) (SNP)

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  



David Stewart

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  



Brian Whittle (South Scotland) (Con)

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.

The Deputy Presiding Officer

I call Joe FitzPatrick to wind up the debate. You have six minutes, minister.

15:52  



Joe FitzPatrick

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.

David Stewart

Will the minister take an intervention?

Joe FitzPatrick

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.

David Stewart

Will the minister take an intervention now?

Joe FitzPatrick

Very briefly; I have lots of other points to cover.

David Stewart

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?

The Deputy Presiding Officer

Could members quieten down, please?

Joe FitzPatrick

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.

Final vote on the Bill

After the final discussion of the Bill, MSPs vote on whether they think it should become law.

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Final vote on the Bill transcript

The Presiding Officer (Ken Macintosh)

The first question is, that motion S5M-17566, in the name of Kevin Stewart, on the Fuel Poverty (Targets, Definition and Strategy) (Scotland) Bill, be agreed to. As the question is on passing a bill, there will be a division.

For

Yousaf, Humza (Glasgow Pollok) (SNP)
Wightman, Andy (Lothian) (Green)
Whittle, Brian (South Scotland) (Con)
White, Sandra (Glasgow Kelvin) (SNP)
Wheelhouse, Paul (South Scotland) (SNP)
Watt, Maureen (Aberdeen South and North Kincardine) (SNP)
Torrance, David (Kirkcaldy) (SNP)
Tomkins, Adam (Glasgow) (Con)
Todd, Maree (Highlands and Islands) (SNP)
Stewart, Kevin (Aberdeen Central) (SNP)
Stewart, David (Highlands and Islands) (Lab)
Stewart, Alexander (Mid Scotland and Fife) (Con)
Stevenson, Stewart (Banffshire and Buchan Coast) (SNP)
Somerville, Shirley-Anne (Dunfermline) (SNP)
Smyth, Colin (South Scotland) (Lab)
Smith, Liz (Mid Scotland and Fife) (Con)
Smith, Elaine (Central Scotland) (Lab)
Simpson, Graham (Central Scotland) (Con)
Scott, Tavish (Shetland Islands) (LD)
Scott, John (Ayr) (Con)
Sarwar, Anas (Glasgow) (Lab)
Ruskell, Mark (Mid Scotland and Fife) (Green)
Rumbles, Mike (North East Scotland) (LD)
Rowley, Alex (Mid Scotland and Fife) (Lab)
Ross, Gail (Caithness, Sutherland and Ross) (SNP)
Robison, Shona (Dundee City East) (SNP)
Rennie, Willie (North East Fife) (LD)
Paterson, Gil (Clydebank and Milngavie) (SNP)
Neil, Alex (Airdrie and Shotts) (SNP)
Mundell, Oliver (Dumfriesshire) (Con)
Mountain, Edward (Highlands and Islands) (Con)
Mitchell, Margaret (Central Scotland) (Con)
McNeill, Pauline (Glasgow) (Lab)
McMillan, Stuart (Greenock and Inverclyde) (SNP)
McKelvie, Christina (Hamilton, Larkhall and Stonehouse) (SNP)
McKee, Ivan (Glasgow Provan) (SNP)
McDonald, Mark (Aberdeen Donside) (Ind)
McArthur, Liam (Orkney Islands) (LD)
McAlpine, Joan (South Scotland) (SNP)
Matheson, Michael (Falkirk West) (SNP)
Mason, Tom (North East Scotland) (Con)
Mason, John (Glasgow Shettleston) (SNP)
Martin, Gillian (Aberdeenshire East) (SNP)
Maguire, Ruth (Cunninghame South) (SNP)
Macpherson, Ben (Edinburgh Northern and Leith) (SNP)
Mackay, Rona (Strathkelvin and Bearsden) (SNP)
Mackay, Derek (Renfrewshire North and West) (SNP)
MacGregor, Fulton (Coatbridge and Chryston) (SNP)
Macdonald, Lewis (North East Scotland) (Lab)
MacDonald, Gordon (Edinburgh Pentlands) (SNP)
MacDonald, Angus (Falkirk East) (SNP)
Lyle, Richard (Uddingston and Bellshill) (SNP)
Lockhart, Dean (Mid Scotland and Fife) (Con)
Lochhead, Richard (Moray) (SNP)
Lindhurst, Gordon (Lothian) (Con)
Leonard, Richard (Central Scotland) (Lab)
Lennon, Monica (Central Scotland) (Lab)
Lamont, Johann (Glasgow) (Lab)
Kidd, Bill (Glasgow Anniesland) (SNP)
Kerr, Liam (North East Scotland) (Con)
Kelly, James (Glasgow) (Lab)
Johnstone, Alison (Lothian) (Green)
Johnson, Daniel (Edinburgh Southern) (Lab)
Hyslop, Fiona (Linlithgow) (SNP)
Hepburn, Jamie (Cumbernauld and Kilsyth) (SNP)
Haughey, Clare (Rutherglen) (SNP)
Harvie, Patrick (Glasgow) (Green)
Harris, Alison (Central Scotland) (Con)
Harper, Emma (South Scotland) (SNP)
Hamilton, Rachael (Ettrick, Roxburgh and Berwickshire) (Con)
Halcro Johnston, Jamie (Highlands and Islands) (Con)
Griffin, Mark (Central Scotland) (Lab)
Greer, Ross (West Scotland) (Green)
Greene, Jamie (West Scotland) (Con)
Gray, Iain (East Lothian) (Lab)
Grant, Rhoda (Highlands and Islands) (Lab)
Grahame, Christine (Midlothian South, Tweeddale and Lauderdale) (SNP)
Gougeon, Mairi (Angus North and Mearns) (SNP)
Golden, Maurice (West Scotland) (Con)
Gilruth, Jenny (Mid Fife and Glenrothes) (SNP)
Gibson, Kenneth (Cunninghame North) (SNP)
Freeman, Jeane (Carrick, Cumnock and Doon Valley) (SNP)
Fraser, Murdo (Mid Scotland and Fife) (Con)
Forbes, Kate (Skye, Lochaber and Badenoch) (SNP)
FitzPatrick, Joe (Dundee City West) (SNP)
Finnie, John (Highlands and Islands) (Green)
Findlay, Neil (Lothian) (Lab)
Fee, Mary (West Scotland) (Lab)
Fabiani, Linda (East Kilbride) (SNP)
Ewing, Fergus (Inverness and Nairn) (SNP)
Ewing, Annabelle (Cowdenbeath) (SNP)
Dugdale, Kezia (Lothian) (Lab)
Dornan, James (Glasgow Cathcart) (SNP)
Doris, Bob (Glasgow Maryhill and Springburn) (SNP)
Dey, Graeme (Angus South) (SNP)
Denham, Ash (Edinburgh Eastern) (SNP)
Davidson, Ruth (Edinburgh Central) (Con)
Crawford, Bruce (Stirling) (SNP)
Corry, Maurice (West Scotland) (Con)
Constance, Angela (Almond Valley) (SNP)
Cole-Hamilton, Alex (Edinburgh Western) (LD)
Coffey, Willie (Kilmarnock and Irvine Valley) (SNP)
Chapman, Peter (North East Scotland) (Con)
Carson, Finlay (Galloway and West Dumfries) (Con)
Carlaw, Jackson (Eastwood) (Con)
Campbell, Aileen (Clydesdale) (SNP)
Burnett, Alexander (Aberdeenshire West) (Con)
Brown, Keith (Clackmannanshire and Dunblane) (SNP)
Briggs, Miles (Lothian) (Con)
Bowman, Bill (North East Scotland) (Con)
Bibby, Neil (West Scotland) (Lab)
Beattie, Colin (Midlothian North and Musselburgh) (SNP)
Beamish, Claudia (South Scotland) (Lab)
Ballantyne, Michelle (South Scotland) (Con)
Balfour, Jeremy (Lothian) (Con)
Baker, Claire (Mid Scotland and Fife) (Lab)
Baillie, Jackie (Dumbarton) (Lab)
Arthur, Tom (Renfrewshire South) (SNP)
Allan, Alasdair (Na h-Eileanan an Iar) (SNP)
Adamson, Clare (Motherwell and Wishaw) (SNP)
Adam, George (Paisley) (SNP)

The Presiding Officer

The result of the division is: For 121, Against 0, Abstentions 0.

That is agreed to, and the Fuel Poverty (Targets, Definition and Strategy) (Scotland) Bill is passed. [Applause.]

Motion agreed to,

That the Parliament agrees that the Fuel Poverty (Targets, Definition and Strategy) (Scotland) Bill be passed.

The Presiding Officer

The next question is, that motion S5M-17615, in the name of Joe FitzPatrick, on the Human Tissue Authorisation (Scotland) Bill, be agreed to.

For

Yousaf, Humza (Glasgow Pollok) (SNP)
Wightman, Andy (Lothian) (Green)
Whittle, Brian (South Scotland) (Con)
White, Sandra (Glasgow Kelvin) (SNP)
Wheelhouse, Paul (South Scotland) (SNP)
Watt, Maureen (Aberdeen South and North Kincardine) (SNP)
Torrance, David (Kirkcaldy) (SNP)
Tomkins, Adam (Glasgow) (Con)
Todd, Maree (Highlands and Islands) (SNP)
Stewart, Kevin (Aberdeen Central) (SNP)
Stewart, David (Highlands and Islands) (Lab)
Stewart, Alexander (Mid Scotland and Fife) (Con)
Stevenson, Stewart (Banffshire and Buchan Coast) (SNP)
Somerville, Shirley-Anne (Dunfermline) (SNP)
Smyth, Colin (South Scotland) (Lab)
Smith, Liz (Mid Scotland and Fife) (Con)
Smith, Elaine (Central Scotland) (Lab)
Simpson, Graham (Central Scotland) (Con)
Scott, Tavish (Shetland Islands) (LD)
Scott, John (Ayr) (Con)
Sarwar, Anas (Glasgow) (Lab)
Ruskell, Mark (Mid Scotland and Fife) (Green)
Rumbles, Mike (North East Scotland) (LD)
Rowley, Alex (Mid Scotland and Fife) (Lab)
Ross, Gail (Caithness, Sutherland and Ross) (SNP)
Robison, Shona (Dundee City East) (SNP)
Rennie, Willie (North East Fife) (LD)
Paterson, Gil (Clydebank and Milngavie) (SNP)
Neil, Alex (Airdrie and Shotts) (SNP)
Mountain, Edward (Highlands and Islands) (Con)
Mitchell, Margaret (Central Scotland) (Con)
McNeill, Pauline (Glasgow) (Lab)
McMillan, Stuart (Greenock and Inverclyde) (SNP)
McKelvie, Christina (Hamilton, Larkhall and Stonehouse) (SNP)
McKee, Ivan (Glasgow Provan) (SNP)
McDonald, Mark (Aberdeen Donside) (Ind)
McArthur, Liam (Orkney Islands) (LD)
McAlpine, Joan (South Scotland) (SNP)
Matheson, Michael (Falkirk West) (SNP)
Mason, Tom (North East Scotland) (Con)
Mason, John (Glasgow Shettleston) (SNP)
Martin, Gillian (Aberdeenshire East) (SNP)
Maguire, Ruth (Cunninghame South) (SNP)
Macpherson, Ben (Edinburgh Northern and Leith) (SNP)
Mackay, Rona (Strathkelvin and Bearsden) (SNP)
Mackay, Derek (Renfrewshire North and West) (SNP)
MacGregor, Fulton (Coatbridge and Chryston) (SNP)
Macdonald, Lewis (North East Scotland) (Lab)
MacDonald, Gordon (Edinburgh Pentlands) (SNP)
MacDonald, Angus (Falkirk East) (SNP)
Lyle, Richard (Uddingston and Bellshill) (SNP)
Lockhart, Dean (Mid Scotland and Fife) (Con)
Lochhead, Richard (Moray) (SNP)
Leonard, Richard (Central Scotland) (Lab)
Lennon, Monica (Central Scotland) (Lab)
Lamont, Johann (Glasgow) (Lab)
Kidd, Bill (Glasgow Anniesland) (SNP)
Kerr, Liam (North East Scotland) (Con)
Kelly, James (Glasgow) (Lab)
Johnstone, Alison (Lothian) (Green)
Johnson, Daniel (Edinburgh Southern) (Lab)
Hyslop, Fiona (Linlithgow) (SNP)
Hepburn, Jamie (Cumbernauld and Kilsyth) (SNP)
Haughey, Clare (Rutherglen) (SNP)
Harvie, Patrick (Glasgow) (Green)
Harper, Emma (South Scotland) (SNP)
Hamilton, Rachael (Ettrick, Roxburgh and Berwickshire) (Con)
Halcro Johnston, Jamie (Highlands and Islands) (Con)
Griffin, Mark (Central Scotland) (Lab)
Greer, Ross (West Scotland) (Green)
Greene, Jamie (West Scotland) (Con)
Gray, Iain (East Lothian) (Lab)
Grant, Rhoda (Highlands and Islands) (Lab)
Gougeon, Mairi (Angus North and Mearns) (SNP)
Golden, Maurice (West Scotland) (Con)
Gilruth, Jenny (Mid Fife and Glenrothes) (SNP)
Gibson, Kenneth (Cunninghame North) (SNP)
Freeman, Jeane (Carrick, Cumnock and Doon Valley) (SNP)
Fraser, Murdo (Mid Scotland and Fife) (Con)
Forbes, Kate (Skye, Lochaber and Badenoch) (SNP)
FitzPatrick, Joe (Dundee City West) (SNP)
Finnie, John (Highlands and Islands) (Green)
Findlay, Neil (Lothian) (Lab)
Fee, Mary (West Scotland) (Lab)
Fabiani, Linda (East Kilbride) (SNP)
Ewing, Fergus (Inverness and Nairn) (SNP)
Ewing, Annabelle (Cowdenbeath) (SNP)
Dugdale, Kezia (Lothian) (Lab)
Dornan, James (Glasgow Cathcart) (SNP)
Doris, Bob (Glasgow Maryhill and Springburn) (SNP)
Dey, Graeme (Angus South) (SNP)
Denham, Ash (Edinburgh Eastern) (SNP)
Davidson, Ruth (Edinburgh Central) (Con)
Crawford, Bruce (Stirling) (SNP)
Corry, Maurice (West Scotland) (Con)
Constance, Angela (Almond Valley) (SNP)
Cole-Hamilton, Alex (Edinburgh Western) (LD)
Coffey, Willie (Kilmarnock and Irvine Valley) (SNP)
Chapman, Peter (North East Scotland) (Con)
Carson, Finlay (Galloway and West Dumfries) (Con)
Carlaw, Jackson (Eastwood) (Con)
Campbell, Aileen (Clydesdale) (SNP)
Burnett, Alexander (Aberdeenshire West) (Con)
Brown, Keith (Clackmannanshire and Dunblane) (SNP)
Briggs, Miles (Lothian) (Con)
Bowman, Bill (North East Scotland) (Con)
Bibby, Neil (West Scotland) (Lab)
Beattie, Colin (Midlothian North and Musselburgh) (SNP)
Beamish, Claudia (South Scotland) (Lab)
Balfour, Jeremy (Lothian) (Con)
Baker, Claire (Mid Scotland and Fife) (Lab)
Baillie, Jackie (Dumbarton) (Lab)
Arthur, Tom (Renfrewshire South) (SNP)
Allan, Alasdair (Na h-Eileanan an Iar) (SNP)
Adamson, Clare (Motherwell and Wishaw) (SNP)
Adam, George (Paisley) (SNP)

Against

Mundell, Oliver (Dumfriesshire) (Con)
Lindhurst, Gordon (Lothian) (Con)
Grahame, Christine (Midlothian South, Tweeddale and Lauderdale) (SNP)

Abstentions

Harris, Alison (Central Scotland) (Con)
Ballantyne, Michelle (South Scotland) (Con)

The Presiding Officer

The result of the vote is: For 116, Against 3, Abstentions 2.

That is agreed to, and the Human Tissue (Authorisation) (Scotland) Bill is passed. [Applause.]

Motion agreed to,

That the Parliament agrees that the Human Tissue (Authorisation) (Scotland) Bill be passed.

The Presiding Officer

The final question is, that motion S5M-17529, in the name of Bill Kidd, on standing order rule changes, be agreed to.

Motion agreed to,

That the Parliament notes the Standards, Procedures and Public Appointments Committee’s 12th Report 2019 (Session 5), Standing Order Rule Changes (SP Paper 532), and agrees that the changes to Standing Orders set out in Annexe A of the report be made with effect from 3 September 2019.

This Bill was passed on 11 June 2019 and became law on 18 July 2019. 
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