The next item is the statement by the Cabinet Secretary for Health, Well-being and Sport on deemed consent for organ donation—the first six months. I call on the Cabinet Secretary, Vaughan Gething.

Thank you, Presiding Officer. I am grateful for the opportunity to provide Members with an update six months on from the introduction of the Human Transplantation (Wales) Act 2013 and the introduction of deemed consent for deceased organ donation in Wales. This fully came into force on 1 December 2015. Members will know that people aged 18 and over who have lived in Wales for more than 12 months and who die in Wales are now regarded as being willing to donate their organs unless they have expressly said they do not wish to do so.

The path to organ donation is a complex one, but consent is the stage at which most donations are lost and I am extremely proud that Wales now leads the way as the first nation in the UK to move to a soft opt-out system of consent. I fully expect that the new system will create a step change in consent for organ donation in Wales and early indications are that that is the case. In line with many other European countries with similar systems, this law was introduced to address the chronic shortage of organs for transplant that we face in Wales. I am sure we’ve all heard heart-breaking stories about people on organ waiting lists. However, based on international evidence, we anticipate that the new system will increase organ donation by around 25 per cent, or an additional 45 organs per year.

In preparation for the change in the organ donation consent system, a great deal of work was undertaken to inform and engage the public. In the two years prior to full implementation, we undertook the largest and most wide-ranging public health information campaign in the history of devolution to explain these changes. Now, regular information has been collected on public awareness and the understanding of the organ donation law to monitor the effectiveness of that campaign. The latest survey in February 2016 showed that 74 per cent of the Welsh public could describe the changes unprompted, compared with 53 per cent in 2012. Now, this is an unprecedented level of understanding for something that was considered by some as being complicated. That 21 percentage point difference highlights a highly effective campaign, and I’d like to express my heartfelt thanks to the people of Wales for not only embracing this ground-breaking legislation but for also taking the time to consider, to discuss and to register their decision about organ donation.

As of 28 May 2016, just over 167,000 people in Wales, or roughly 5 per cent of the population, are registered on the NHS organ donor register to opt out. That’s far less than was anticipated in June last year, when a survey showed that 14 per cent of Welsh residents would opt out. It’s really important that people who do want to positively opt out of the system have the opportunity to do so. But, in addition, there are now over 1.1 million people in Wales, over 35 per cent of the population, who are now positively registered to opt in to organ donation.

I’d like to thank the numerous stakeholder organisations for their unstinting support. I’d especially like to thank all the patients and families who helped with our public information campaign by generously sharing their own experiences, their moving experiences, to personalise the campaign. None of this would have been possible without the hard work and support of a very large number of people across Wales and beyond.

The redevelopment of the organ donor register was a key part of the work needed to provide the means to record an opt-out decision. That work was carried out with NHS Blood and Transplant and the other UK nations, and it was delivered six months before the law came into force. This allowed people enough time to record their decision. Everyone in the UK is now able to record their organ donation decision, whatever that might be. This has only been possible by the support provided by people across this Chamber in the development and implementation of the Act.

There will continue to be a need to maintain an understanding of the new system and the organ donation choices that people have in Wales: opt out, opt in or to do nothing. The communication plan for the coming year will focus on promoting conversations between families and loved ones on their organ donation decisions, whilst also encouraging people to register their decision on the organ donor register.

Although an increase in awareness levels is a measure of success, the real indication that that our legislation has delivered the required outcome will be an increase in donors, resulting in more patients and families benefiting from transplantation. Results for the first six months of the new legislation being in place, from 1 December last year to 31 May this year, showed 18 cases where consent was deemed in Wales. Ten of those proceeded to donation, but there were 42 consenting additional donors in total for that period. For the same period in 2014-15, there were 38 consenting donors, and 31 in 2013-14.

If we look solely at the 18 cases where we can identify that consent was deemed, 10 patients proceeded to donate. From those donors, 37 organs were donated and 32 went on to transplantation. In comparison to the figures for the similar period prior to the change in the law for all proceeding donors, these numbers do look very positive indeed. A formal evaluation of the impact of the new law has been commissioned and will be published next year.

I am grateful to Members of all parties for their contributions over the last few years in ensuring that Wales has been able to lead the UK in developing a soft opt-out system of consent for organ donation. Wales needed a transformation in donor and family consent, and the implementation of the Human Transplantation (Wales) Act 2013, I believe, has delivered that change. I look forward to hearing Members’ comments and questions.

As well as taking this first opportunity in the Senedd to congratulate the Cabinet Secretary on his appointment and to thank him for this statement, may I congratulate each and every one who has made it possible for us to reach this point in terms of organ donation in Wales? We will hear from my fellow Member, Dr Dai Lloyd, in a few moments, as I know that he has a few questions to ask. But I would like to pay tribute to him and thank him for introducing the proposal to change the legislation back in 2007.

I hope that the early statistics that have been outlined by the Secretary do demonstrate that this has been a valuable step, and a step that has already saved lives and will continue to do so. It will save many lives here in Wales. But I also hope, as we’ve seen with a number of other pieces of innovative legislation here in the National Assembly for Wales, that it will encourage other democratic bodies in these isles to be just as innovative.

May I ask what discussions the Welsh Government has had with other Governments within the UK to urge them to adopt a similar system, particularly bearing in mind, of course, that patients in other parts of these isles could have benefited from our new legislation here in Wales and the positive statistics that have emerged as a result of the introduction of the legislation?

May I also ask how many people who could have donated organs during this period had opted out? I note from the statement that far fewer than expected had opted out—some 5 per cent, as compared with the 14 per cent that was estimated in an earlier prediction—but each lost opportunity is an opportunity lost in terms of saving lives. So, what are the statistics there? Given that we need to continue to inform people on the importance of organ donation, what is the Government’s intention as regards continuing with the work of educating people in this area, following this legislative change?

In the case of those who hadn’t stated one way or another what their preference was, in how many cases was a decision made to not donate organs on the basis of discussions with family, and not on a medical basis? More generally, along with most people in this Chamber today, this has been a debate that has raised very complex moral questions over the past few years, but, as I say, it’s the outcomes that matter at the end of the day, and it’s good to be able to look back at a successful start to this new piece of legislation.

I thank the Member for his comments. In particular, I acknowledge the work of, as I said, a range of people in the Chamber, including Dai Lloyd. In the interim, when he left us for a brief period of time, we actually passed the legislation that we’re now debating and discussing today.

To start, I think there were three particular points and questions that you made for me to answer. The first was about other Parliaments and other parts of the UK. I actually attended the board meeting of NHS Blood and Transplant before the election, in Cardiff. It was interesting, as you could see very real interest in the system that we have here in Wales and the impact that it is having. So, there is very real interest right across the NHS family in the United Kingdom about the amount of difference that this legislation will be making. I can’t speak for other Parliaments as to whether they plan to follow our legislation, but I do know there’s a very real interest in it. Personally, I’d be surprised if, in 10 years’ time, we don’t see similar pieces of legislation in other parts of the United Kingdom, because, if it makes the difference we want it to, and we think it has done already in the first six months, then you would have thought that people across parties, in other parts of the UK, would equally want to see extra dozens of lives saved every year, because the challenge of having enough donors available to match people waiting on the organ donor waiting list is not just a problem here in Wales.

In terms of those people who have opted out but might otherwise have been donors, I’m not actually aware that we do collect that particular information—I will check, though. Part of the reason is, of course, that there are precise circumstances under which people can be donors for organ transplantation, and I’m not aware that we can assume that someone could be a donor if it were not for the fact that they had opted out. But, I will check that and the particular point you also raised about the number of people where donation does not proceed because of objections from the family. I made the point earlier in interviews today about this that, even for people who have positively opted in and are on the register, it is still possible that transplantation won’t proceed because of the conversation with the family around the time of donation. Now, that’s something that some people are very frustrated by, but we do have to think about the impact on people who are here, not just the person who wishes for donation to take place.

The final point that I want to address is: you mentioned those people who are sceptical and those people who were not positive about the change being made—a range of people from different communities and a number of faiths had concerns about the change to a deemed-consent system One of the things I’m really pleased about is the work that we did specifically with a range of different groups, including religious and faith communities, to look at what the changes meant, and, actually, we’ve seen a different sort of attitude. People are more relaxed. They are happier that some of the concerns they had about how the system might work have not been borne out, and I think that’s part of the reason why we’ve not seen quite as many people positively opting out, to register that they don’t want to take part in the donation system. But, it is something where, after six months, after a year, and further on, we need to review the impact and understand whether we’re making the difference we want to or whether we could still do more.

First of all, may I start off by welcoming you to your position? I hope we have the opportunity to work well together to try to improve health services within Wales. I’m very grateful for this statement. For those of you who were here in the last Assembly, you will remember that I very clearly worked very hard on this as an individual Member and I leant the Government my vote, and I’m very pleased to see, after six months—because I said I’d keep a watching brief over the next few years—that things are going so well. There are a couple of areas, though, where I would like some questions, and I would like to make the point that I speak on my own behalf because, of course, the Welsh Conservatives had a free vote on this matter.

Minister, have you had any additional thought as to promoting this with your colleague, the education Secretary, in terms of getting the message through to young people in particular? I conducted a very unscientific piece of research at the weekend when I saw this was coming up, when I asked representatives from one school in Carmarthenshire—a secondary school—two in Pembrokeshire and two in the Vale of Glamorgan what they knew about organ donation, and there were very, very lukewarm and woolly replies. Now, the previous Minister gave a commitment that our communication plan already has new funds set out in it to make a special effort to ensure that young people have the information that they need, and, of course, schoolchildren, those who are coming up to leaving secondary school and those at higher education colleges are those who are about to become 18 and will then be able to opt in or out. So, I’d like to know what you’re going to do to really try and ramp up that communication programme, do you have funds set aside, and if you could give us an indication of how much those funds might be.

I’d like to just drill down very slightly into the 18 people who hadn’t made a preference either way. You said that 10 of them went on to donate and, obviously, eight didn’t, and I wondered if there’d been much qualitative research undertaken as to the reasons that those who didn’t go on to donate might not have. It could have been just that they didn’t have a match and there was no-one who wanted their particular organs, but it would be very interesting to see if there are any trends there as to perhaps age groups or background as to why that message hadn’t got through to them.

I also would like to know if you’ve done or intend to do any qualitative research on those people whose families who did agree to allow organ donation to go ahead because, of course, one of the things that we talked about a lot last time was ensuring that there was proper training in place for the doctors and nurses who are involved in the organ donation area, and it’s about lessons learned. Are we handling those people effectively, kindly, compassionately? They’re at a time of great personal stress, and that’s why I just want to pick you up on one comment you made, which gave me a slight shadow of unease, when you said that there is a frustration that some people said ‘no’ and didn’t let their organs go ahead. We should accept that frustration as part of the freedoms that we give people, and I wouldn’t like that ever to be translated to a person at the front line into any pressure on a family. At the end of the day, it’s the family’s right. We’ve enshrined that in this piece of legislation, that if there isn’t presumed consent, that the discussion happens, that there is the ability for them not to proceed. And we shouldn’t show a flicker of concern over that, because that’s what we said and that’s what we must adhere to.

Finally, Minister, could you set out the budget that’s in place to promote organ donation and outline whether there’s scope for further investment, if research proves that we need it to move this issue forward? Thank you.

Thank you for that series of questions. I’ll just deal first with the point that I think was about a misunderstanding, rather than anything else, because I was actually referring to the role of the family in not supporting donation, but of someone who’s actually made a decision to go on to the register to opt in. That still happens, but that’s part of what we need to do. It’s part of the sensitivity of the medical professionals and, in particular, in the scrutiny phase of this and afterwards, the record of the role of the specialist nurse, both being positive in explaining choice and what it means for people at that time, whether they opt in or opt out, whether they consent to donation proceeding and also, in particular, those who do say ‘yes’, because that’s been one of the things that’s been most affecting through this process is meeting families and loved ones of people who have gone on to be donors. So many of them have a positive story to tell about a death not being in vain, and understanding that there are other people who have continued with their lives because of the choice that’s been made. And that’s absolutely been very genuinely, very motivational, hearing that.

In terms of your broader points about research on impact and a review, we have, of course, committed to reviewing the impact of the legislation. I’m sure there will be a number of people wishing to undertake their own research on the impact of the law, but the Government has committed to review the impact of the legislation. We won’t be doing that right now because this is an update statement rather than a formal review of where we are in the first six months. We’re going to spend approximately £200,000 over the course of this next year on promoting what’s taken place, that information campaign, but you’ll be aware funding will continue into the next year because the Assembly committed to spending about £7.5 million over 10 years when we passed this legislation.

I do want to start off by recognising what Angela Burns said at the start of her contribution, and not just thank you—I should say it to Rhun as well—but say congratulations both to yourself and Rhun ap Iorwerth on your changes in role, and welcome to a significantly interesting portfolio where nearly half the Government’s money is spent. I do recognise that on this particular issue, not only did the Welsh Conservatives have a free vote, but I recognise very well that you said you were a sceptic, and it was a leap of faith to support the legislation coming into place. That’s why it is important that we’re open and transparent about the impact that the legislation is having and, equally, if we understand there’s more that we could or should do to improve the system. And that isn’t just about increasing the number of donors, but actually understanding the impact on families of any decision to proceed with donation.

I’ll deal with two final points that occurred in your comments and questions. The first was about ensuring that awareness continues, in particular for younger people. We’re already planning to ensure that people who are approaching their eighteenth birthday have what’s been called—I’m not sure if this is the right terminology—‘a rising 18s letter’. So, people who are approaching their eighteenth birthdays receive formal communication that tells them, reminds them, about the new system and what their choices are and it encourages them to talk to their loved ones, to have the conversation with people around them about what they would like to see happen. Equally, for the future, we’re looking at GP registration. It isn’t ready yet, but at some point we should be able to do something when people register with their GPs, so people can register their choice at that point as well. The more opportunities we give people, the easier we make it for people to record what their choice is—to opt in, to opt out or to do nothing—I think the better it is for all of us. That’s part of the success this legislation needs to have, to see the impact we want it to have, when more and more lives are saved each year.

I too would like to offer my congratulations on your appointment, Cabinet Secretary, and thank you for your statement. It is indeed good news that deemed consent created 10 more donors who contributed to half of the transplants in the last six months. Organ donation is the greatest act of generosity and compassion a person can undertake. Sadly, we still have over 200 people waiting for a life-saving transplant in Wales, and yet only 35 per cent of people in Wales have opted in to the organ donation register.

Deemed consent is a great leap forward and 32 organs have been transplanted that might not have been if the system was not in place. But, we all have a duty to encourage people to register as donors. In 43 per cent of cases where organ donation is possible, families say ‘no’ to donation, because they don’t know whether their loved one wanted to be a donor. Let’s take the burden off our grieving families and register as organ donors. When someone registers as a donor, their wishes, whether their family agrees or not, should be respected and not overridden. Deemed consent only applies if you die in Wales. Let’s ensure that we can save lives after our deaths elsewhere in the UK by opting in to the organ donation register.

Cabinet Secretary, what is the Welsh Government doing to encourage more people to register as donors? What about parental guidance to young people embarking on leaving school? What is the Government doing to improve education about organ donation? A lot of objections to organ donation are on religious grounds. Is the Welsh Government working with religious groups to help educate people about the beliefs of becoming an organ donor? It is unfortunate that if a potential donor’s family cannot be contacted, consent for donation cannot be deemed. What consideration has the Government given to adding emergency contact details to a patient’s medical records?

Cabinet Secretary, only 157,000 people have opted out from the organ donation register. Let’s use the next six months to persuade the remainder of the Welsh public that it is better if they give their express consent to organ donation and make their wishes known to their loved ones than to rely on deemed consent alone. Thank you.

Thank you for the comments from the UKIP health spokesperson and welcome to your own role. I’m pleased to hear your very clear support for the legislation and the outcomes that we wish to achieve. A part of what we’re doing today, and we’ll be doing throughout the rest of this year and the rest of the time we have a communication campaign, is to encourage people to make choices—whether that choice is to opt out or to opt in or to agree to do nothing and to potentially allow their consent to be deemed. I’ve dealt with a range of the points that I think you’ve raised about what we’re doing to try and promote a different range of people to have a conversation with their loved ones to make sure that their choices are known to the people they leave behind in particular. And in response to Angela Burns and Rhun ap Iorwerth, I’ve mentioned a number of things that we are already looking to do.

On the two particular points I think I should probably respond on, one is about the emergency contact for a family or loved one. Because of the particular circumstances in which people are able to be organ donors, it’s likely that a family member or loved one will be there with them. Where that isn’t the case, they still need to check that organ donation is possible, because you need to know enough about their medical history to understand whether their organs could in fact be made available for donation. So, there are practical points about that.

Just on your point about faith communities in particular, which I mentioned earlier, just to confirm, we employed a specialist consultancy called Cognition, which have experience of dealing with a range of different communities, and they’ve actually brought together people of different faith backgrounds to understand the concerns they had and how they’ve been able to get over those. So, I think people are more informed now, and that’s been part of the success of the legislation to date. I actually attended a workshop with a range of different people—not because of my particular role in Government, but also significantly because of my own constituency and the diversity that exists—with different faith groups to understand what their concerns were, where they’d moved to an understanding of the system that we have available and the choices that they can make. Because, actually, a range of people who are leaders in faith communities have the potential to influence people, to look at what we’re doing and to make their choice—whether it’s to opt in, opt out or do nothing.

So, I’m pleased with where we are now, six months in of the legislation going active, and I look forward to giving further updates to Members on where we have got to and where we still want to get to in the years and months to come.

I thank the Cabinet Secretary for health for his statement and also for his kind words. Naturally, this is an example of the commendable use of legislation in this place, and it is worth noting that, without the Assembly, this Act would not exist. I know that that’s stating the obvious to some extent, but many people ask, ‘What has the Assembly ever done for us?’ Well, here we have quite a commendable example of legislation that changes lives, that saves lives and which transforms other lives.

Would you agree with me that one of the main aspects of this legislation is that it sets a precedent in the discussion between the doctor or nurse and the family in these tragic circumstances, when somebody who they love deeply has died, and they have to have the conversation about what happens to the organs? I’ve been in that position myself. If you didn’t have the background of the legislation, that is, that the will of the country states that the expectation is that you will donate your organs—. Previously, prior to the legislation, there was no such expectation and, as a doctor, you could sound extremely hard-hearted in those extremely poignant moments when you also have to ask permission for somebody’s organs who, two hours previously, was completely healthy. That’s the great difference. International surveys have demonstrated that, in the previous situation in this country, if I, as a doctor, asked for that permission in that most difficult of situations, 40 per cent of families refused permission. But, in other countries that have already changed, where that discussion has taken place, and with the background that there is an expectation and that that is the will of the country, only 15 per cent of families now refuse consent. Those are the kinds of figures that we would expect to see now.

It’s also important to note that, when one person dies and consents to give their organs, you actually transform the lives of seven other people, bearing in mind that we’ve all got two kidneys, one liver, one pancreas, a heart, lungs and two corneas. All you need to do is the maths. So, I’m extremely pleased to see the success of this legislation. I could anticipate it happening over the years when we’ve had very intense and serious discussion in this place and outwith this place. I’m very pleased to see those figures confirming that. I would emphasise and also push you to persuade other Governments within these isles to follow the same path. Over the years, I have had discussions with people in the Scottish Parliament and in Northern Ireland and there are organisations there that are also following the way that we have taken here. But England is the big problem—well, in this context, as in a number of other contexts, obviously. But I would encourage you to try to persuade the Government in London to try and adopt similar legislation. Thank you.

Thank you for the comments and questions, Dai Lloyd. I’m more than happy, as I said in response to Rhun ap Iorwerth, to continue the conversation with other Parliaments and other parts of the NHS family across the UK. As I say, I know they are actively considering and interested in the progress of our legislation and the practical impact on the numbers of people going on to be organ donors.

I think this is a really good example of the creative use of our powers in this place for a real purpose—a practical and improved difference for citizens in Wales. And I think it is a genuine cross-party cause for recognition about how we could do things in the future as well. In particular, your point that each donor helps more than one person: we’ve seen 10 people proceeding to donation, 32 extra transplants taken, in the first six months through deemed consent. That’s a significant number of people who are being helped by the progress of this legislation and I hope to see further improvement on that in the future too. But I would say that, even at this point, if we see that maintained in the future, then the legislation will have been well worth it—having many, many people in years to come who can say that their life has been improved or saved because of the choice that we’ve made to create this legislation.

I’ll deal with your final point about the nature of the conversation. You’re absolutely right about the fact that we’ve had the legislation passed, so it changes the nature of the conversation and the approach that people take in having a conversation at an incredibly difficult time for individuals in saying goodbye to a loved one and understanding what might then happen about the gift of life to other people as well. Having the conversation start from a positive point about donation being, if you like, the default option to opt for, was something that came through in the consultation during the course of the Bill and has been reinforced in engagement that we’ve had with people throughout the last couple of years as well. So, I think there’s good reason to be optimistic about that, but equally good reason to review whether that is still the case in practice, about the way that different people outside this place—faith and voluntary communities—and, in particular, linking to people actually undertaking those conversations, as to whether what we think we’re seeing in the first six months is being maintained or whether there is more that we can do to improve the situation further.

And, finally, Mohammad Asghar.

Thank you very much, madam Presiding Officer. Minister, I congratulate you on your new post. I will say it’s a very noble job to give organ donation. An independent report by the organ donation taskforce found that people of Asian and Afro-Caribbean origin make up 23 per cent of the kidney waiting list, but only 3 per cent of those donors come from these communities. Studies also show that cultural issues are important influencing factors when making a decision about organ donation. A recent study in Birmingham found that 60 per cent of Muslims said that organ donation is against their faith. I can assure you, Minister, that that is not the case. Engaging and educating our Muslim communities in Wales with relevant Muslim organisations is the answer. What steps are you going to take? I’m quite voluntarily trying to help you, if possible, to go to all mosques in this country to make sure that Muslims know the benefit of this noble object.

Written leaflets are not good enough—they have different languages in Muslim communities, more than half a dozen. And to make sure that they understand the language and the objective of this Government to make sure that our noble job is achieved in this country and we set an example—I’m sure you’re doing a wonderful job, but there’s still a long way to go for that. Thank you very much.

I thank Mohammad Asghar for his particular points in an area of real challenge for us. I’m particularly grateful that you’ve highlighted the fact that, of people on the waiting list, there is a significantly higher than expected number, certainly out of proportion with the general population, of people from black and Asian origin communities, and yet, of the people who are registered on the organ donation list, there’s a significantly lesser amount than in the population as well. So, we do have a real challenge and some of it is cultural, you’re right. I also know that this isn’t religious; there’s no religious bar to being a donor. But there is the challenge of some of the cultural norms that have built up and how we get around those. That’s why the work of cognition in supporting that conversation has been so important.

There’s no point in pretending that that work is done and everything is fine now. It needs to be a continued conversation. We want to change the culture and the way in which people have that conversation. It’s also why personal stories have been so important and so powerful. Understanding people in the communities that you live in, seeing someone waiting on the list, and then seeing someone and their family who’ve gone through the process of someone in their family passing away but becoming an organ donor, are really powerful motivators to challenge the way people feel about their choices, and, in many ways, the most persuasive way.

So, I do recognise there’s more to do in this area. There’s no lack of complacency, but what I would say is we’ve already undertaken steps, and not just with people in the Muslim community; there is a range of black and Asian-origin communities in the Christian faith, as well as the Hindu community and the Sikhs as well, that we’ve had conversations with, too—so, a wide range of faiths to engage here as well, but also a wide range of languages. We have made sure that a range of information is available in a different number of community languages. That doesn’t mean to say that all is perfect or the engagement we have with a different range of communities cannot be improved, and I look forward to us understanding what more we can do to achieve exactly that, because I don’t think there’s any difference between parties on this point.

I thank the Cabinet Secretary.