Organ Donation (Opt-out System) (PE1453)
Good morning, ladies and gentlemen. My name is David Stewart and I am the committee convener and a Labour member for Highlands and Islands. I welcome you to the meeting and, as always, I ask you to turn off mobile phones and electronic devices because they interfere with our sound systems. No apologies have been received.
Agenda item 1 is consideration of a current petition. PE1453, by Caroline Wilson on behalf of the Evening Times and Kidney Research UK, is on the introduction in Scotland of an opt-out system for organ donation. This morning the committee is taking evidence via videoconference from, from the Welsh Government, Mark Drakeford, who is the Minister for Health and Social Services, and Pat Vernon, who is the head of policy for organ and tissue donation legislation.
I remind members that because of the technical aspects of the video link there will be a delay between members’ questions and witnesses’ responses, and the other way round. It is important that no one try to speak over anyone else, so members should speak only when called to do so and should not interrupt colleagues or witnesses because that would affect our ability to hear the answers.
I welcome the minister, Mr Drakeford, and Ms Vernon. I ask members to introduce themselves; I have already done so.
I am an SNP member for South Scotland.
I am an SNP member for Central Scotland.
I am the SNP member for the Kirkcaldy constituency.
I am a member for Glasgow.
I am the SNP member for Falkirk East.
I am a Conservative member for West Scotland and the Conservative health spokesman.
I hope that the witnesses can hear us. The minister will make a brief opening statement of about five minutes. After that, I will ask a few questions and then my colleagues will take turns asking questions. We have approximately one hour, although we do not need to use all of our time. Thank you very much for co-operating with the videoconferencing.
Thank you for the invitation to give evidence.
Organ donation saves lives; therefore, our increasing the rate of organ donation will allow us to save more lives in Wales. Last year 35 people in Wales died on the organ donor waiting list; such deaths are the key motivation for the changes that we have brought about.
Over the past 20 years, a great deal has been achieved in improving medical practice in organ donation, but as the latest United Kingdom-wide strategy, “Taking Organ Transplantation to 2020” says, if we are going to make progress we need continuing evolution in practice, and a revolution in consent rates.
We believe that one way to improve consent rates in Wales is to move to a soft opt-out system. From 1 December 2015, citizens of Wales will have three choices to make in relation to organ donation: they will be able to continue to opt in and to put their names on the organ donor register; they will be able to opt out and to have that decision recorded in the newly fashioned register; or they can choose to do nothing, in which case they will know that that will mean that their consent to organ donation will be deemed.
It is clear to us from evidence that we have taken that, in ethical terms, deemed consent is not a poor person’s consent, but is absolutely as valid as the other two forms of making known one’s views.
We in Wales have been in a prolonged debate over the matter; deemed consent is not something that we have moved towards quickly. The debate at National Assembly for Wales level began in 2008 and has progressed through a number of committee inquiries and pieces work with the public. By the 2011 National Assembly elections, the debate had crystallised sufficiently that three of the four political parties that are represented in the National Assembly included in their election manifestos a commitment to legislate to bring about a deemed consent system.
Post 2011, an extended period took place in which we went through a white paper, a bill and the whole Assembly process before moving to the full legislative process. We are now in a two-year period of continuing engagement and education to ensure that by the time the legislation goes live on 1 December 2015 we will have done everything that we can to ensure that people in Wales are aware of the changed law and the new choices that will be available to them.
We think that the legislation will make a modest contribution to increasing organ donation. We expect 15 extra donors a year as a result of the legislation, and that from the average donor will come three organs for donation; we expect in an average year 45 more organs for donation as a result of the legislation. That will make significant further inroads into the lists of people who are waiting for organs. The bill has been a popular success and has substantial and growing support among the Welsh population. We are confident that by the time it is fully implemented we will have an informed public and a regime that will allow us to increase levels of donation.
Thank you very much for explaining that so clearly. We are now going to questions and points by members. Ms Vernon, if you wish to contribute at any time, please catch my eye and I will be very happy to take you on board for questions and points. Again, I record my thanks to the Evening Times for the work that it has done on the campaign, which has raised awareness very well in Scotland. It is a good example of how our petitions system works. As you know, we visited The Welsh Parliament to watch your petitions system; you have a similar and excellent system.
You have kind of covered my first question but—for the record—a useful starting point for us would be your providing an exact definition of “soft opt-out”.
As I said, when the Human Transplantation (Wales) Act 2013 is implemented people in Wales will have three choices. One choice will be to take no action, which will be to choose to have one’s consent to organ donation deemed—what we call the a soft opt-out system. However, in our legislation there is a continuing role for the family, so donation can never go ahead without the involvement of the family. The family’s role in law, in Wales, will be that at the point of donation, when a person has had their consent deemed, their family will always be asked whether they have better information about the potential donor’s views. If the family knows that although the person had not opted out they would not have wished donation to go ahead, they will be able to contribute that information, in which case donation will not happen. The family will be asked to represent not their point of view but what they know of the potential donor’s views. That is why the word “soft” comes into our system.
Thanks, that is helpful. Can you tell me a little more about the evidence that the welsh Parliament took? How convincing was the evidence about soft opt-out?
We took extensive evidence about the experience elsewhere in Europe, in particular. The University of York had previously conducted a broad review of the available literature, and we secured an update of that through one of the London colleges. It was clear to us that there is a strong association between an opt-out system and increased levels of organ donation. When you get down to the level of the precise system that any one country operates, you will always find contextual and cultural factors that mean that it is not possible simply to transpose the experience into your own context. However, if you do a meta-analysis and consider the picture across all those experiences, you will see that there is no country in which a move to an opt-out system has not been associated with enhanced levels of organ donation. We were confident that, at that level, the evidence was secure.
As you know, Spain’s objective, like the objective of every country, is to have higher donation rates for organs and tissues. This is not a zero-sum game, of course, but Spain found that the solution was to ensure much better co-ordination of transplants, rather than to have an opt-in or an opt-out system. Of course, I accept that the issue is not about pitching one against the other, but about considering what is most appropriate for a country. What is your view of the Spanish example?
That is an important point. As I tried to say in my opening remarks, we have never claimed that a move to an opt-out system, by itself, is sufficient to drive up rates of organ donation. It is one among a series of other contributions that need to be made. Better alignment of the system, making the practical arrangements work better and ensuring that there is proper expertise among people who advise families in that incredibly difficult set of circumstances all contribute.
Our conclusion, though, is that much of what was achieved in Spain through better alignment of different aspects of the system has already been achieved across the United Kingdom as a result of the significant work that has gone on over the past 20 years. When I mentioned what the new strategy says about evolution in practice, I meant to suggest that there are no huge gains to be made through radical new changes in practice; the real gain is to be made in the realm of consent. That is why we have taken the action that we have taken.
Thank you. That is a useful point.
Ms Vernon—do you wish to add anything at this stage?
I cannot add much to what the minister has said. As he said, we reviewed the international evidence and had a colleague from one of the London colleges consider the evidence that has been published since the previous study, and we concluded that an opt-out system is strongly associated with increased donation, which we feel is quite a strong indication in favour of the system.
How do you guarantee that the donor’s instructions are carried out and are not contested by the family? Can you enlighten us about the views of any interest groups that participated in the consultation?
That was a subject of considerable debate during the committee stages of the bill, because our law is predicated on the views of the donor being paramount. How can a donor ensure that their views prevail?
09:15There are two essential safeguards in our system. First, people will still be able to opt in or out. A strong supporter of organ donation who does not want any ambiguity about their view will be able to register as having opted in and that view will prevail. A person who is anxious that his or her view might in some way be contested by a family member whom they know has a different view—family members do not always share views; not all families are straightforward—will, under our act, be able to appoint a representative who will exercise consent on their behalf. People who have such anxieties will be able to choose anyone they like in whom they would have confidence to represent their view. That person will make the decision on their behalf—they will give express consent. Our legislation provides that safeguard for people who definitely do and people who definitely do not want to be donors and who want their representative to be able to represent that.
That was very interesting. Thank you.
I would like to know about the involvement of faith groups and interest groups. What was their stance on the matter in the run-up to the enactment of the legislation?
We had a lively debate with faith communities in Wales. Some faith groups simply take the view that deemed consent is not consent. In many ways, there is nothing that I can—or would wish—to do to persuade people who are of that point of view to share mine. We must respect that view.
However, faith groups in Wales—whether we are talking about faith groups of a Christian persuasion or those of a Muslim persuasion; we have a substantial Muslim community in Wales—have made it clear that they are all in favour of increasing rates of organ donation. They are very keen to work with us in the post-legislative context to ensure that members of their faiths work positively with the new law.
During the two years for which education and information will be provided, we will take extra steps to reach faith groups in which we believe levels of understanding of the law need to be improved. For example, you will know that the need for donation is higher among people who are of Muslim heritage than it is among other parts of the community, yet rates of donation are lowest among people of Muslim faiths. We will do specific work with Muslim communities in Wales, including faith leaders, to ensure that the two-year period is used to improve understanding of the scheme and—we hope—to improve participation in it thereafter.
That, too, was interesting.
I have one last question. You have done a lot of work—excellent work, it seems—to communicate what the legislation will do, but have you ascertained whether there has been a significant shift in public support for your planned programme as far as the number of people who support the opt-out is concerned?
Yes, we have. Opinion testing is carried out regularly. That is done independently of the Government, although it is funded by us. The most recent figures show a significant shift in favour of the new law, and reductions in the number of people who said that they were undecided and in the number of people who said that they would opt out as a result of the new law. That shift in opinion has been most pronounced among younger age groups. In other words, the more we have talked about the issue and the more people have debated it around their kitchen tables, the more opinion has shifted and settled in favour of the new regime. We will continue to track those changes over the next two years.
Thank you.
Good morning, minister. It sounds as though you have resolved many of the issues with which we have been wrestling and continue to wrestle, so I doubt that any of our questions this morning is not touching on the very subjects about which you have already had to come to an agreement.
You said that the three main parties went into the last election committed to a change in the system. Was that by coincidence, or was there some consensus and agreement between the parties to approach the issue in that way?
Three of the four main parties at the Assembly had a commitment in their manifestos. It was not done by design or pre-agreement, but it was the product of the four years that preceded that election during which all parties in the Assembly had been involved in the exploratory work at committee level. The successive reports that were produced within the Assembly were all produced on a cross-party basis, not always with everyone agreeing but with all parties involved in the production of those reports. Among three of the parties, there was a feeling that the state of public opinion in Wales had reached a point of crystallisation and it was possible to move from debate to positive action.
Was it important for the success of the legislation that that broader consensus among a number of parties existed at the point at which it was decided to move forward with legislation?
That has been very important. Even with agreement between parties at the headline level, as the legislation made its way through the Assembly, there were differences in emphasis and different points of detail between parties that agreed on the headline. However, in taking the legislation through the Assembly, my point of view was that it was not the sort of legislation that one wished to take through on a partisan, “We’ve got more votes than you have”, basis. I was keen that, by the time that we got to the final vote on the floor of the Assembly, we would have the broadest possible consensus. The Conservative Party did not have a commitment but its members were allowed a free vote in the final vote, and significant numbers of Conservative members supported the legislation in its final form. Inevitably, that meant quite a lot of crafting of compromises around some aspects of the legislation, but given its nature, I felt that that was more important than simply using the weight of Government numbers to move the legislation through the process.
In relation to opting out, you said that when someone has done nothing at the point of donation and there is deemed consent, the family will always be asked whether it has further information on the person’s views. You also said that a representative could be appointed. Who will arbitrate and make the ultimate decision about whether the transplant will proceed?
If a representative is appointed, that person has primacy. That person will represent the potential donor’s views. Even if a family were to disagree entirely, it is clear in our law that if someone has appointed a representative, that person’s view will prevail. There is always room for discussion and for different views to be contributed, but if an individual has taken the trouble to appoint a representative, that person’s view will be the one that prevails in the end.
To whom does the representative express the donor’s view? If it is the family, and the family is being asked for the additional views, by whom is the family being asked and who then makes the decision?
Thank you. I am sorry that I did not get that point originally. The views are expressed to the clinical team, whose responsibility it is to explore the possibility of donation. In Wales, just as in Scotland, the clinical team is represented by the specialist nurse in organ donation. That is the person who deals with the issue all the time and who is particularly trained in eliciting views from families and explaining to them what the decision would involve. A discussion takes place with the clinical team, which allows the family to express its views. If a representative has been appointed, the team is responsible for obtaining their view as well.
That leads to where I wanted to end up. If someone wishes to opt out, what different opportunities are there for them to register that wish? Having been broadly sympathetic to this approach, my concern as health spokesperson is around my confidence in systems. Everyone remembers the dreadful scare in Liverpool, where it turned out that children’s tissue had been kept and nobody had known anything about it.
There is such a wholly positive attitude underpinning the current system, and levels of registration are increasing. All this turns on the system that we put in place to record people’s wishes being thoroughly robust. Were it to transpire after the event that an individual’s wishes had not been respected, the media might exploit that as being something of a national scandal, which could have a prejudicial effect on the whole system. That is my concern.
How certain are you about the robustness of the system to ensure that individuals’ views are respected? An individual could make a decision to opt out years in advance—I hope that it would be years in advance—of a situation arising where their views would have to be considered and they might never have thought to go back to check the current status of their wishes as recorded.
Those are really important points. The issue of reputational damage to the system, were organ donation to go ahead in circumstances where the donor clearly did not wish it to happen—or vice versa—has preoccupied us during the process of the bill. I say to people who ask me in Wales that opting out will be absolutely as easy as opting in; it will not be made more difficult. We will make sure that anybody who wants to opt out can do it as easily as anybody who wants to opt in can do it. People will be able to opt out at general practitioner surgeries, by visiting the internet site and so on; it will be very straightforward.
The safeguard in our system comes through the role of the family. Donation cannot go ahead without the involvement of the family. As you suggested, someone might have opted in on the register many years previously but might subsequently have changed their mind and come to a different view. If the family knows and is able to tell the clinical team that, even though the individual is on the register as being in favour of organ donation, their views had changed and they would not wish to be a donor, the family’s view would prevail. The safeguard comes through having the discussion at the point where a decision has to be made. We will not rely simply and solely on the register, even though we are confident that the register itself will be as friendly to users and accurate as it can be.
In essence, in order to secure public confidence, you have gone for little brother, rather than big brother—if I can put it that way—in terms of the way the system would be judged.
We had a very lively debate about the role of the family. One of the amendments that the Government made to the bill during its passage was to make it clear on the face of the bill that the family had this right and this role to play. I hope that I have made this clear already, but I want to make it completely clear that what the family is asked to do is represent the known views of the donor, not its own views.
I understand that. One thought that has just occurred to me is: what happens when there is not a family?
09:30
Where people have no family, if they have appointed a representative, the donation will go ahead, but if somebody dies and no family member or representative can be found, the donation will not go ahead. We have had debate about that, because somebody with no family members might have opted in and put their name on the register, but there are issues other than consent. For example, the clinical team will have to pursue with the family issues of medical history and whether the person is in a proper clinical condition to be a donor. From the clinical evidence, we know that those circumstances will be rare but, to protect the integrity of the system, our decision has been that if a person has no family and no representative, the donation will not proceed.
In a deemed consent system, such as the one that we will have, the family is required to confirm other details. It would not be right to deem a person’s consent unless we can be sure that they were ordinarily resident in Wales—that is one of the conditions—and there will be other things to check, as the minister said. That is part of the reason why we say that families or long-standing friends should be present and able to provide or confirm those details.
Clearly, the introduction of your opt-out system in Wales will result in two different registers operating within the UK. Ms Vernon has just touched on the issue of Welsh residence. What steps have been taken to address any potential problems that might arise from maintaining two registers?
In fact, there will still be just one register for the whole of the United Kingdom, because we have now secured agreement between the four nations that that will be the case. There is to be a new register, which will allow the recording of opt-out decisions and appointed-representative decisions. The register will be new, but it will be a single common UK register. That agreement is now secured and the funding has been secured, too, to ensure that the register will be in place.
What measures are in place to engage with the public to raise awareness of the change and to allow people to make an informed decision?
Thank you for that question. As I said, we have a two-year period of information and education. In essence, it will operate in two main ways. We have a mass campaign that is designed to ensure that the ordinary citizen who wishes to be informed about the new system will have that opportunity. We are exploring a range of ways in which we can ensure that that information gets to somebody who wants to be informed. That involves television and newspaper advertising, information in GP surgeries and using our primary care community to help us. A letter setting out the new system will go by post to every single citizen who is resident in Wales, as we lead into the system.
The second thing that we will do, which is allied to that, is to run some information campaigns that are targeted at groups of people for whom we think we have to do that bit extra to ensure that they are informed. I have mentioned faith groups, but we will do a similar job with young people as they become 16 or 17 and as they approach 18. In Wales, people will not be capable of having their consent deemed until they are 18, so we need to ensure that those young people understand the position that they will be in.
We will do a particular job of work with students, for example, who come and live in Wales to study. They will have to have been here for 12 months before they fall within the ambit of deemed consent. We will use the first year of their study in our universities in Wales to ensure that they get an extra level of information. It is therefore a dual campaign, in that there will be a mass campaign for the ordinary citizen and special action to ensure that we reach the groups that we think we have to make an extra effort to reach.
One of the groups that I am interested in are those who have difficulty with reading and writing. How will you engage with those people?
That is an interesting point. We had lots of discussion during the passage of the bill on the issue of capacity and how we ensure that nobody is within the deemed consent regime who does not have the mental capacity to understand the choices that they have. The 2013 act has various mechanisms to respond to that.
We will make particular efforts to reach people who have communication issues, not just in reading and writing. Our general campaign is pitched at a level at which you would expect most people to be able to understand it. However, we have people who are deaf or who have problems because they are hard of hearing. We are lucky in Wales in having a very vibrant third sector, particularly around health. We will work with our third sector partners to ensure that they do that extra bit of activity to reach those people who may find it more difficult to get from normal channels the information that they need. That will include people in the circumstances that you described.
Some may regret our celebrity-driven society, but in your mass campaign, which seems to be extremely thorough, do you use well-known Welsh celebrities to raise the profile of the campaign and get the message over?
We do. The Welsh Kidney Patients Association has long been a leading advocate for the change in the law in Wales and it has always used prominent figures in Welsh public life to persuade people of the need for donation. For example, Leigh Halfpenny, who I guess you will have heard of, is one of the people who are most prominently associated with promoting organ donation in Wales. The Welsh Rugby Union has been a powerful partner in all this, but we also use other celebrities—for example, Katherine Jenkins has been an active participant in the Kidney Wales Foundation campaign. So, we use people who will be better known than me—that is for sure—in the public mind to get the message over.
That is interesting. Thank you.
One thing that we have found extremely powerful is the use of real-life case studies, so we have a very good bank of case studies that we have built up. The people from those studies are very happy to talk to the media about their own experiences and so on. Using well-known celebrities and people who have real experience of the area can be a powerful combination.
Good morning, minister and Ms Vernon. I have been left to ask about the financial aspects of the 2013 act and specifically to explore with you what the costs of implementing the new system are estimated to be and how that will be monitored.
There is a cost involved with the introduction of the new system. We have set aside £7.5 million in Welsh Government budgets over the coming years to support a range of activities. That will include the education and information campaigns that we have been exploring and a new set of training packages for specialist nurses and other clinicians to ensure that they are fully conversant with the new system.
We think that one extra donation a month, which is more or less what we expect the new system to bring about, will not have a major impact on the critical care capacity of the Welsh national health service, but we have a new critical care plan for Wales that sits alongside the 2013 act. I recognise that some of the £7.5 million will be needed to improve our critical care capacity to be able to respond to the new level of donation.
Once the system is up and running, all the evidence that we have shows that if we are able to secure just two more donations in Wales, the system will pay for itself, because the cost of kidney dialysis is very significant. If we can bring just two more people off dialysis and through transplantation into what is a far better quality of life for them, the extra cost of running the system will be paid back. Although investment is required up front to bring it all about, once it is happening the system will pay for itself and probably do more than that.
Given that there are costs up front, will the system have implications for any other initiatives before you feel the benefit at the other end?
In the circumstances that we are all in, any spending decision is inevitably also a decision not to spend money on something else. If your question is whether we have to make choices to give this priority over something else, inevitably the answer is yes, because of the financial circumstances. However, it is our belief that the investment is worth while, because in the longer run it will not only pay for itself but will lead to such an improvement in the quality of the lives of the people who will be affected by it.
Rightly, today’s discussion reflects the discussion that was had in the Assembly during the passage of the legislation, when we focused very much on the person who was making the donation and on ensuring that the act would fully protect their position and provide the necessary safeguards to ensure that people within a deemed consent regime understand the decision that they are making. Nevertheless, I tried regularly to remind members of the Assembly that there is another very significant audience: the people who are waiting for donations.
More than 200 people are on the organ donor waiting list in Wales. I visited a kidney dialysis unit in Cardiff in the immediate run-up to the final debates on the floor of the Assembly. It is very powerful testimony when someone who is sitting next to you says, “I’ve been on the waiting list for three years. Every day I wake up and think to myself, ‘That’s one day less in which this miracle could be performed for me.’”
Part of the act of persuasion that we had to carry out with some Assembly members and with faith groups and so on was to ensure that people who had benefited from donation or who were waiting for donation came to the Assembly to tell their stories.
I wish the minister and Ms Vernon a good morning.
I want to tease out further the answers you gave to Jackson Carlaw. The role of the family is crucial in relation to either opt-in or deemed consent. You mentioned a scenario in which someone passes on some time after they have opted in, the family says that the person’s wishes had changed and they no longer wanted to opt in, and they are insistent that the individual no longer wanted their organs to be used. You also mentioned an appointed representative. Where would their views stand in relation to the family’s views and the wishes of the individual—who in many cases will be deceased—in such circumstances?
09:45
If someone has appointed a representative, and the representative’s account of that person’s views differs from the family’s account, the representative’s views will prevail. That is absolutely clear in our legislation. If someone has taken the trouble to appoint a representative, it is their view that will determine the outcome, even when that view is different to the family’s view.
Let me go back to the first set of questions. If someone is fearful that their family might not faithfully represent their views or might have a different set of views to their own, and they want to make certain that their views will matter at the point at which the decision is made, a representative will be appointed. It is important that, in those circumstances, the contribution from the representative—the person whom someone has gone out of their way to appoint to represent their views—will prevail.
Will there be a register of appointed representatives from which individuals will be able to choose? One issue is that someone may opt in and appoint a representative, and the eventual donation takes place five, 10 or 20 years down the road. How do we weigh the individual’s decision 20 years ago against the circumstances of the time at which the donation is made?
That is an important point to think through.
As the bill made its way through the Assembly, I—and most people, I think—reached the conclusion that we cannot legislate for every contingency. Certain circumstances may well arise in the future. If someone appoints a representative, that person’s name is recorded on the register, which is how we know who the person is. However, many years might elapse and, although the person might have known that representative very well 20 years earlier, things might have moved on.
That is why, in the end, in such unusual and probably complex circumstances, the clinical team will still have to exercise their judgment. Just because something is legal does not mean that it has to happen. If the clinical team felt that there was such an ambiguity around someone’s wishes to be a donor, they would take into account—as one of your colleagues mentioned earlier—that they would not want to act in a way that would cause a reputational risk to the system as a whole.
There will always be discretion available to the clinical team to make a decision in such circumstances, and to say, “Given what we know and the length of time that has elapsed and so on, we are not confident that the donation should go ahead.”
As the minister says, the specialist nurse and other members of the clinical team will have the specialist skills to work their way around potential conflicts and disagreements, using the information that they have. Just because something is lawful, it is not necessarily inevitable, and the donation may not go ahead for a number of different reasons, but it is part of the team’s skill to work that out. It will also be covered to an extent in the code of practice that will be developed to underpin the legislation.
Thank you for that clarification, Ms Vernon. However, although someone who opts in can appoint a representative, that representative may predecease them or cease to be their friend or associate. The issue is whether the clinical team supersedes the wishes of the family in circumstances in which the appointed representative is no longer available to engage in the discussion.
The clinical team must have the discretion to make a decision in those circumstances. There are a series of contingencies; as I said, we cannot in law anticipate every possible set of circumstances, which is why we make it clear in our legislation that, as Pat said, just because something is lawful it is not inevitable. The clinical team will always have a residual discretion to deal with unusual sets of circumstances.
Thank you, minister.
My final question relates to a campaign in the 1980s—I am not sure whether the minister is aware of it. When donors were sought at that time, cards were issued. The campaign centred on ensuring that donated organs stayed in the NHS and were not used in the private sector; my organ donor card from the 1980s said “NHS only.”
Minister, can you indicate whether, when you put through the legislation in Wales, there were discussions about ensuring that those who opt in could specify that only the NHS would benefit from their organs and that their organs would not be transferred to patients receiving private treatment? You referred to kidney transplants, but body parts are now used in a number of areas of medical development. Can you clarify whether there is an opt-in clause that allows individuals to state that they want their organs to be used only by the NHS?
The system in the future will be the same as the system now in that regard, Mr Wilson.
As you know, if you opt in now you are able to make a series of subsidiary choices. As you say, a wide range of organs can be donated and, even if someone opts in, they do not have to commit to making all their organs available. For example, many people choose not to allow their eyes to be used, when they are quite happy for every other organ to be used.
The ability to restrict the use of your organs to the NHS will be available in the future as it is available now. The debate in Wales was more about making it clear that additional organs that may become available to the Welsh NHS will be available to the NHS system in any part of the UK.
I would like us to continue, but I am conscious that we are running out of time. I have a final, quick point. In the legislation or in the debate in the Welsh Assembly, did you make any reference to the role of a living will, in which someone could identify that they wish to donate their organs and name a representative? Was that discussed at all?
I do not recall that being raised directly, although Pat will check whether there is anything specific that I have forgotten. Our debate centred more on making sure that the ability to appoint a representative is as straightforward as possible and advertised as widely as possible in the organ donation system itself.
The legislation provides for a person to make arrangements orally or in writing—for example, to appoint a representative—but it does not specify how that should be done. I would imagine that you could include a living will in those sorts of arrangements.
At the end of the day, organ donation will come down to whether or not the information is accessible at the time that it is needed, so we would not encourage people to put their wishes somewhere where nobody would know about them if the time ever came when they were in a position to donate their organs.
That is why our communications campaign encourages people to talk about their organ donation decisions. Similarly, the Scottish Government has its “wee chat” campaign. That is the sort of thing we want. We do not want decisions to be hidden away in inaccessible places.
You said that you have had 15 additional organ donations.
That is what we expect, convener. In the regulatory impact assessment that we had to produce as part of the bill, we had to state the number of extra donations that we expect to come about in Wales as a result of moving to deemed consent.
Ordinary citizens are surprised when they learn just how few donations are made. When I ask people to guess the number of donations that were made in Wales last year, they overestimate the number by many times, and when I tell them that there were only 63 donations and that we are hoping for 15 more, the fact that we are actually talking about such a modest number takes their breath away.
I realise that not much time has passed since the legislation went through, but how many additional donations have there been since then?
The legislation does not go live until 1 December 2015 to allow for the period of education and so on. We are aware that simply raising the profile of the issue and getting it discussed in the media and by people are already having an impact on people’s decision making but, as you suggest, it is really too early to give you such figures.
So, although the legislation is not yet in force, the awareness raising will potentially help with donations up to 2015.
Yes.
If you can stay with us for a couple of minutes, we will now have our summation and decide our next steps on the petition. I am sure that I speak for the committee when I say that your evidence was excellent and I thank you for giving up your time to present it to us.
The petition is clearly very important, and we need to be active in our next steps. Indeed, I think that the petition itself merits a specific debate in Parliament—or what we call a plenary session—but we will have to make a bid through the Conveners Group for time for that. We have done that two or three times over the past few years but, as ever, it is a decision for the whole committee. Do members share my view that we should at least ask for a plenary session to debate this issue in future?
Members indicated agreement.
We will therefore make arrangements to put in a bid.
Do members have any suggestions for any further steps that might be necessary but which we have not yet mentioned?
I thank the minister and Ms Vernon for their extremely interesting and informative evidence. I do not know what communication they are having with the Scottish Government on this matter, but we will certainly be interested in seeing the evaluation once the legislation goes live. We should certainly continue to raise the profile of this issue, and I agree with the suggestion that we seek a plenary session to discuss the petition.
Thank you for that. Do members have any other comments?
As the minister has made clear, the soft opt-out system will not be introduced in Wales until December 2015, which I presume means that the situation in Wales will not be evaluated until late 2016 or even 2017.
Given the minister’s comment that two more donations in Wales would cover the extra costs of running the system and that an extra 15 donations are expected, which suggests that the system will pay for itself, it might be time to encourage the Scottish Government to move faster on the issue. A plenary session might well help in that respect.
Thank you, Mr MacDonald.
As members have no further comments, I thank the minister and Ms Vernon for giving up their valuable time to give evidence in what has been an excellent session that has helped us to understand the issue. There are so many good ideas from your legislation that we need to incorporate in Scotland, and we will certainly keep you up to date with developments up here.
I will suspend for two minutes to bring the videoconference to an end and to allow our next witnesses to take their places. Thank you very much.
Thank you, too.
And good luck at the weekend. [Laughter.]
Thank you for that.
10:00 Meeting suspended.Previous
AttendanceNext
New Petition