Official Report: Minutes of Evidence

The Chairperson (Mr Gildernew): I welcome, via StarLeaf, Máirtín MacGabhann, from the Donate4Dáithí campaign. Can you hear us OK, Máirtín?

Mr Máirtín MacGabhann (Donate4Dáithí Campaign): I can indeed, Chair. Thank you.

The Chairperson (Mr Gildernew): Tá fáilte romhat, Máirtín.

We are joined by Fiona Loud, policy director of Kidney Care. Can you hear me OK, Fiona?

Ms Fiona Loud (Kidney Care UK): I can hear you. Can you hear me?

The Chairperson (Mr Gildernew): Yes, we are hearing you loud and clear actually and metaphorically. [Laughter.]

We are also joined by Fearghal McKinney, policy and public affairs manager with the British Heart Foundation (BHF). Can you hear us OK, Fearghal?

Mr Fearghal McKinney (British Heart Foundation): Good morning, Chair. I can hear you OK, and I hope that you can hear me.

The Chairperson (Mr Gildernew): Yes. We can hear everyone. I welcome you all to this morning's meeting. It is hugely significant and a great development. The second meeting that I and Pam Cameron had as Chair and Deputy Chair was with the Donate4Dáithí campaign. We had the privilege and honour of meeting Máirtín, Seph and Dáithí, the main man himself. I acknowledge the amount of work that you have put into the campaign and, as some members said in the earlier session, bringing the conversation out of hospitals and into homes. All of you have done that, as have many others. I acknowledge Alan Chambers's point that Jo-Anne Dobson brought forward a Bill. My colleague Pat Sheehan sought to bring forward a Bill and was delighted when the Department indicated that it was going to do so. It is a very important issue, and I acknowledge and credit you all. In particular, Máirtín, your campaign has engaged across society in a positive, vibrant and, at times, joyful way, highlighting the fact that Dáithí is just a wee man who needs a heart and needs it sorted. There are lots of people in the same situation, and he has brought a tremendous spotlight onto the issue.

In that spirit, I ask you to make your presentation or opening remarks, after which we will go to members' questions. I will go to Fiona first, then Fearghal and then Máirtín. Do you want to make some opening remarks, Fiona? I would like you all to keep it brief. We are under time pressure, and the session will have to be brought to a conclusion at 10.50 am. If there are outstanding questions from members or answers that the panel have not had a chance to fully reflect on, we will follow up in writing via the Committee Clerk after the meeting. That will take some of the time pressure off.

Ms Loud: Thank you very much for the opportunity to speak. I am the director for the UK kidney patients' support charity Kidney Care UK. I am only here today because of an organ donation. I spent five years on dialysis, and, 15 years ago, I was fortunate enough to receive a kidney from my husband Keith. However, there are so many other people who are not fortunate enough to receive a living donation, and it is for them that we absolutely applaud and support the move towards a change in law here to give more people the opportunity to receive that life-transforming transplant.

Kidney Care UK is proud to call Jo-Anne Dobson our Northern Ireland ambassador. She is a living kidney donor to her son Mark and, of course, a former Assembly Member and Committee member. Our advocacy officer in Northern Ireland, William Johnston, is also a kidney recipient. We are proud to be able to support the population of Northern Ireland who have kidney disease with our grants and advocacy for patients and hospitals, all the information that we are able to produce and much more. We commit fully to supporting the public campaign as this goes on.

Seven out of every 10 people who are waiting for a transplant are waiting for a kidney. Kidneys are the only transplants that take place in Northern Ireland. Our living kidney donor programme is the jewel in the crown nationally and internationally. As I said, however, that is where we are with deceased donations in Northern Ireland: 80 people are waiting for a kidney transplant. There are probably more than that, because, as you heard from Dr Trainor of the Belfast Trust, some people are not necessarily active on the waiting list due to COVID-related issues. Some of those people will die over the next few years as they wait for a transplant. That needs to change. Some kidney patients will need more than one transplant in their life. A transplant is a gold star treatment, but it is not a cure. We must, of course, never forget the generosity of organ donors as we go through this.

Changing the law is the right thing to do but not the only thing to do. As others have said, having learned lessons from colleagues who started to tread some of these paths in the rest of the United Kingdom, we know that rigorous and sustainable funding is needed for the first year and onwards — before the law comes into place and once the law comes into place — to keep reminding families and members of the public of the situation with the law. In that way, we will be able to consolidate the changes. We would like to see infrastructural funding in place for the capacity that you heard Dr Trainor talking about. That includes training for intensive care staff and the ability to make use of fantastic new technology to preserve organs.

Catherine McKeown talked to you about the work with children and young people. Children and young people are the change-makers. We would like to see that work continue and to very much be targeted at young people in Northern Ireland. They will influence their families. You have already heard about Dáithí. Other children and young people are waiting for transplants in Northern Ireland. They include David McKenna, whom some of you know. Just yesterday, his mum let us know that, five years after his transplant, he is, unfortunately, on his way to needing another transplant.

Passing the Bill is the best Christmas present that the Committee and the Assembly could give to the entire transplant community in Northern Ireland, many of whom, I am sure, are watching today. It is the gift of hope. We urge the swift passage of the Bill. We know that you have a tight timescale. We offer our continued support in the weeks, months and years ahead to make a success of it, to strengthen the Bill and to improve outcomes for people whose lives stand to be changed by the opportunity of that life-transforming transplant, now and in the future.

The Chairperson (Mr Gildernew): Thank you, Fiona.

Fearghal.

Mr McKinney: Thank you, Chair and Committee members —

The Chairperson (Mr Gildernew): Fearghal, your sound is quite poor. I am not sure whether you can turn it up a little, but be aware that your sound is a bit poor.

Mr McKinney: OK. I will try to speak up as much as possible, if that is helpful.

The Chairperson (Mr Gildernew): That is better, yes.

Mr McKinney: Thank you, Chair and Committee members, for giving us the opportunity to appear before the Committee to discuss this important draft legislation. We have engaged with many of you previously, and we thank you for that engagement.

Much has happened since the discussions began. In November 2020, we were awaiting the launch of the consultation from the Department of Health on a move to soft opt-out. We recognise the depth and breadth of that consultation. It has proved beyond doubt that there is support for a new soft opt-out system here. We are now at the Committee Stage. There has been a long road to get here, with many people campaigning on the issue. If there is one message from the British Hearth Foundation today, it is that we urge the Health Committee and all Assembly Members to continue with that progress so that we can see the legislation passed before the current mandate ends.

The prize is a great one. It is a real opportunity to change the lives of those who are on the transplant waiting list. The most up-to-date figures show that 134 people are waiting for an organ transplant in Northern Ireland and 15 of those are waiting for a new heart.

Legislation here will complete a UK-wide picture. Since 2015, we have seen the difference that the change to a soft opt-out system has made in Wales, where there has been an increase in the consent rate and the donation rate, as well as support from health service staff for the change in the organ donation system. England and Scotland recently started their journey towards a soft opt-out organ donation system. It is gift-of-life legislation, and we respectfully urge swift progress.

With your permission, Chair, I will read an email that I received from a family in Gilford. Donna McGoldrick's son Josh received a heart transplant in July 2018. It is important to bring it back to what she says:

The Chairperson (Mr Gildernew): Thank you, Fearghal. Máirtín, lean ar aghaidh, le do thoil.

Mr MacGabhann: Go raibh maith agat, Chair, and thanks to the rest of the Committee for giving us the opportunity to be part of the session. I am absolutely delighted to speak to you on behalf of my family and the Donate4Dáithí campaign. I acknowledge the role that the Committee has played in getting to this stage. Thinking back to that cold January morning when we met you and Pam, it is remarkable to be at this stage now. I put on record my thanks to the Committee for playing that role. As Fearghal said, we urge the Committee to continue with the same dedication, because we really need to get it through in this mandate.

The overall aim of the Donate4Dáithí campaign is the same as a lot of campaigns like ours: to normalise the talk about organ donation in society. A change in the law here would be a massive step in that direction. As I have said before, it will not be the wave of a magic wand that will solve all our problems, but it would be a massive step towards societal change.

I am not a politician; nor is Seph or Dáithí. However, all of you, who are politicians, are also sons, daughters, mothers, fathers and even brothers and sisters. There is no right or wrong way to find out that your loved one's only and last chance is to receive a donated organ. Every case is different, and people handle the news differently. Many times, people have asked me why we put so much energy into the campaign. The answer is simple. It all started in October 2016, when Dáithí was born and I felt love that I had never felt before. I cannot put that love into words, but it is there. The best way to describe it is to say this: I cannot directly protect my son — I do not know for sure what lies ahead in his life, and I cannot give Dáithí exactly what he needs — and that, for any parent, is heartbreaking. I know that there are many others who are in the same position as me and Seph. What I can do is spend every minute, day and week of my life trying to normalise organ donation, in the hope that people say, "Yes, I will donate". As I said, the Bill is a step in that direction.

Let me take you back to what organ donation is, even though you have heard it already this morning. Organ donation is a last hope for people like Dáithí. We say, "Imagine that there is something that can be done by our political representatives to increase our loved ones' chances". The vast majority of our politicians support it, the vast majority of our clinicians support it, and, more importantly, it is clear that the public also support it. It is safe to say that it means everything to us for the Bill to go through in this mandate and be made law. We welcome any questions that the panel has.

The Chairperson (Mr Gildernew): OK. Thank you, Máirtín and everyone. That really brings it down to the feeling that you describe, which I have had the honour of having with my children. I can understand the impact that not being able to provide that important, life-saving treatment could have. I also recognise the hope that you all talked about and our role in that. In that first meeting, Pam and I said that we would do everything that we could. You have certainly played your role in keeping the issue on the agenda, and the Committee has delivered in keeping it there. We continue to commit and we recommit today to doing everything in our power to make sure that the Bill gets over the line. The Committee will play its scrutiny role and apply the rigour that needs to be applied, but we will also keep it moving forward.

I will go first to Pam Cameron. At the end of the session, I will pick up on anything that may have been overlooked. We are tight for time, as I said. I ask that one member of the panel gives a substantive answer. We will move across to others only if there is additional important information that they want to contribute.

Mrs Cameron: Thank you, Máirtín, Fiona and Fearghal, for your attendance at Committee. As I said in the previous session, it is a sensitive and emotive subject for many people but none more so than Fiona and Máirtín. Thank you for telling your stories. It is important that people who have not experienced it in their family have an opportunity to hear what organ donation means on a personal level.

Congratulations to Dáithí for getting another birthday by him, Máirtín. That is wonderful news. We were all celebrating with him and you all when he hit five. I hope that he has many more birthdays and that he gets the heart that he needs and deserves.

I have one generic question that may be aimed mostly at Máirtín. Obviously, children are not covered by the Bill. How do you believe that legislation on deemed consent, if passed, will help the likes of Dáithí and other children?

Mr MacGabhann: Thank you for your question and the well wishes. He had a brilliant birthday, by the way.

I totally understand the question. To be honest, we agree that it should be only adults who are considered in the Bill. In the consultation, 47% said that children should be excluded from the Bill. I want to give some attention to the fact that 37% said that children should be included. As I said, I believe that it should be adults only. However, the fact that 37% said that opens a door for us. There may be a different question about paediatrics and organ donation.

As for how the Bill will help Dáithí, as I said in my opening statement, the change in the law would be a massive step in the right direction to normalising organ donation in society. Now, public awareness campaigns, education etc would have to go hand in hand with that. All of that, along with society changing to having organ donation as the norm, can only benefit children like Dáithí directly. The public awareness campaign and the conversations that will take place about organ donation in general because of that campaign can only benefit us. We know what the benefits of organ donation and transplantation are. We are confident that, when people hear those statistics and figures, the vast majority of them will continue to support organ donation.

I hope that I have answered that question. If you want me to clear anything up, just ask.

The Chairperson (Mr Gildernew): Thank you, Máirtín. Just to reiterate, if any clarifications are required, we can send those through and they can be dealt with in writing. If there is detail that, you think, will not get fair play within our timings today, indicate that and you can send it on.

Ms Loud: I have just been in conversation with David McKenna's mum. As I mentioned, he had his first transplant but, unfortunately, will need another in a year's time. She fully believes, as Máirtín just said, that, by increasing the debate and discussion here so that people understand what this means to children, they will understand more about what it means to adults as well. That will increase the opportunity for organ donation overall: for children as well as for adults. That is a knock-on benefit from changing the legislation and from the public debate.

Mrs Cameron: Thank you, Fiona.

The Chairperson (Mr Gildernew): Thank you, Fiona. The Committee sends its best wishes to every person out there who is watching this and waiting for, hoping for or needing a transplant. To everyone who has considered joining the opt-in system and may be prompted to do so by watching this today I say, "Please do it. You do not need to wait for the legislation to sign up, and it will improve".

Ms Flynn: I commend Fiona, Fearghal and Máirtín for all the work that your groups and charities have done to get us to this point. As Colm said, we are thinking about every family that has been or is being impacted by the issue. I give special congratulations to Máirtín, Dáithí's daddy. You have done an absolutely wonderful job in campaigning. You should be so proud of yourselves. You have really raised the bar on the issue.

Máirtín, for a long time, your campaign has done a lot of the heavy lifting on awareness. You do that on behalf of your son, obviously, but you also do it on behalf of everyone who is dealing with this issue. In the previous session, the Public Health Agency (PHA) said that it intends to roll out a mass awareness campaign once the legislation is brought over the line, as, we hope, it will be. Have you had any engagement with the PHA on practical ways that it could do that? You said, Máirtín, that this is all about normalising the conversation in families and households, so your input would be greatly valued.

Mr MacGabhann: Thanks for your question. Not a day passes that we do not speak with Catherine from the PHA. She has included us and used us. We have a great working relationship with the PHA. We have complete faith in Catherine and the team being able to run a massive public awareness campaign. One of the biggest benefits of this whole thing is the massive public awareness campaign that will come along with soft opt-out organ donation becoming law. We saw recently in England and Scotland that, before a similar law came into effect, there were massive public awareness campaigns to make people aware of what exactly was happening. It is important that the public know exactly what is happening. I am confident of the benefits of organ donation to people like Dáithí and that people will continue to support organ donation and choose to join the NHS organ donor register.

This will not be the end for our campaign; it will just be the start. We will have to raise more awareness. Like Catherine said earlier, we are really looking forward to the public awareness campaign on the radio and TV and in newspapers and to the conversations that will happen around breakfast and dinner tables, in workplaces and generally. It is an opportunity that we cannot miss.

Ms Flynn: Thanks a lot, Máirtín.

Mr McGrath: Thank you to Fiona, Fearghal and Máirtín. Everyone's campaigns have been so inspirational in trying to push the issue forward. I really love how we can derive so much inspiration from Dáithí, who was a one-year-old, then a two-year-old then a three-year-old and is now five. That speaks volumes about how humanity can reach to us from children and how we should listen and learn from the experiences that they go through. With so many controversial and divisive issues in Stormont, it is really great to see that the Bill has backing here, meaning that its pathway should be fairly simple and swift. It is good that we can rally together and work well together on such issues.

I hear of people out there who are still unhappy with the concept of donation. Have any of the panel had experience of talking to people who have had an epiphany and changed their perspective from being against donation to being supportive of it? Can you explain what your understanding of that was? That could be a powerful message to the people out there whom we still need to bring along with us. Has the panel had any experience of that?

Ms Loud: One of the reasons that we were keen to speak today was to bring in some of the experience from the whole of the UK. I must commend the work of Catherine in the Public Health Agency. It is about transparency. No question is stupid. When people ask questions, it is about answering those questions clearly and directly and being able to engage. Any of the engagement that we have been part of in other parts of the country has been about talking to donor families and letting their voices shine. I cannot speak for them, but the families that I have spoken to say that their wishes and thoughts were respected by encouraging conversations with people.

We have heard Dr Trainor and the Chair say that there is no reason to wait for the law to change if you think that organ donation is right. Nearly a million people in Northern Ireland have already put their name on the organ donor register to say that they support it. That is a really powerful message, so we are coming from a position of strength. Engaging with the different communities, including the faith community, and sometimes, as Catherine mentioned, putting funding in to target specific awareness events is the way that it works. That builds trust and reinforces the messages that we are giving today.

Learning from what we have seen in other parts of the country, I absolutely encourage that engagement and the continued work with families to explain that, while the law is changing, their views and thoughts are as important as ever and that it is just that the default has changed. Some families have already told us that that has made it easier for them not to wonder and not to have to have difficult conversations. This makes it easier for them, and it retains respect. I hope that that helps.

Mr McKinney: I will not deal with this in the singular, Colm, but the Welsh experience has been that, since 2015, consent rates have gone from something like 50% to well over 70%. Our research tells you that 90% of people here support it but only 50% actually sign on to the opt-in system. Experience on a global scale tells us that countries that have employed the soft opt-out system have seen hugely increased donor rates. The evidence is out there.

On the question on engagement and the previous question, think about what has been achieved through small organisations in Northern Ireland, including the Donate4Dáithí Campaign, to raise the profile of this. Just think what a sustained and coordinated campaign of engagement with the wider public could achieve for the soft opt-out system — not for itself, of course, but for the people who wait.

There are 134 people waiting on the organ donation register here, 15 of whom are waiting for a heart. The tragedy behind this is that 14 people on the organ donation register died last year.

The Chairperson (Mr Gildernew): Thank you. That is very sobering, Fearghal. That is the real story.

Ms Bradshaw: I want to ask a question that I asked the previous panel. Do you feel that the age at which people can give deemed consent should be lowered to 16?

Mr Máirtín MacGabhann: Thanks for your question, Paula. I go back to the public consultation, in which 47% of people said that children should be excluded. That would be anyone under the age of 18. I am a teacher, and my personal opinion is that I have no problem with it including people who are 16, but I am also thinking that children can still join the organ donor register and parents can still sign their children up to the organ donor register. I have visited schools with Dáithí. A number of parents have contacted us, and a number of people — 14, 15 and right up to 18 years of age — have reached out to us to say, "I have spoken with my parents. I want to join the organ donor register, and I have joined it". It has been incredible. To bring it back to the Public Health Agency and Catherine, I am on one of the groups with other teachers, and we are working on education and stuff like that. To answer the question bluntly, I personally would not have a problem with the age being 16, but I also listened to Dominic earlier when he said that it should be in line with the rest of the UK. I do not see a problem with it, but I am also OK with it being adults over the age of 18 only, because of the reasons that I mentioned with the NHS organ donor register as well.

Ms Loud: We recommend keeping it consistent with the rest of the UK at the moment. Things can change as we go forward, and, as Máirtín said, all that engagement and education is incredibly important. When my son was 13, he put his name on the organ donor register because of what he saw happening to his mum, so we knew what his wishes were should that terrible thing ever happen to him. We have discussed education and empowerment already, but keeping it consistent in order to make it as successful as possible and as easy as possible for our agencies is what we recommend at the moment.

Ms Bradshaw: OK. I should have said this at the start: thank you all for your campaigning on this. It is a really exciting time, and I look forward to working with you.

Ms Ní Chuilín: Thank you, Máirtín, Fearghal and Fiona. I am sure that you heard the previous session. One of the points that I raised was that the level of awareness now is probably where it has never been, so that is welcome. I appreciate and acknowledge all the work that you are doing. I think that our public health family could possibly do a bit more, but that is like everything in life.

My question is probably not relevant to you, but there have been ongoing difficulties around workforce planning, particularly around intensivists. I mentioned Wales — I think that Fearghal raised it as well — where there is a statutory duty on the Department to ensure that the proper staff resources are there.

What discussions, if any, have you had with the Department or the PHA?

A lot of people will not have thought about registering to be a donor. Frankly, I thought about it but did not do anything about it until Nuala Vallely died. Nuala was a Casement stalwart, and she was on the organ donation register. Jo-Anne Dobson donated an organ. Joe Brolly donated a kidney to Shane Finnegan, and, of course, we had the case of Máirtín, Seph and Dáithí, and there are many others. It all comes down to awareness, and then there is the ugly but practical stuff on resources. What else can the Committee do? What would you like to see the Department doing?

The Chairperson (Mr Gildernew): Fearghal, do you want to come in on that question?

Mr McKinney: Yes. Carál has hit on the point that the legislation is the framework within which this can happen.

The Chairperson (Mr Gildernew): Fearghal, pause a second. We have lost your sound. I will check with the Committee Clerk.

The Committee Clerk: Yes. We lost a bit of sound.

The Chairperson (Mr Gildernew): Fearghal, can you start again, please?

Mr McKinney: I will shout this time, and, hopefully, you can hear me. I am shouting solely for the microphone and not emotively. Carál is absolutely right: the legislation on its own will not work. It needs to have the resources for a proper information campaign to make people fully aware of it. It also needs resourcing and training for all staff involved in transplantation. Reflective of Máirtín's earlier comments, the bar will be around how organ donation will become the norm in our conversations. That, in itself, will put added pressure on the system to be able to deal with the demand.

Ms Loud: I endorse what Fearghal said. As Carál said, the Committee can help by continuing to engage and support the PHA to make sure that we are evaluating the resources that are needed to make it a success. As we go along, monitoring will be very important, as well as putting in the support at the start.

I will make a comment as the chair of a local organ donation committee. I go to a donor hospital. At first hand, I see the training for intensive care staff that was mentioned. There is also constant support for the hospitals that provide the donations, and that is as important as the support for the transplantation side of things. The Committee can help by looking into that, giving that support and helping with the infrastructure to support it all.

The Chairperson (Mr Gildernew): Thank you. That has been really useful. I welcome the fact that there appears to be a good level of coordination and cooperation in the communication with the PHA. It is probably an indication of why the campaign has been so successful in raising awareness. However, do you think that there is anything that could or should be looked at to further highlight awareness? The critical point is to move people who genuinely support organ donation to take the step of putting themselves on the register. That is partly what we are trying to address. In the interim, can anything more be done to move people from the thought to the action of signing up for organ donation in order to improve the levels?

Ms Loud: It is about telling those stories. You have heard Máirtín tell Dáithí's story. The more that we tell the stories of people who face organ failure, the more that people will feel the motivation to put their name down and to share their decision about organ donation with their family. From Wales and England, we have seen that it is not just about changing the law. It is not the magic wand. That is a really important message. It is about encouraging people to continue to have those vital conversations. It makes it easier in the unthinkable situation in which you might become a donor. It is far more likely that you will need a transplant than you would ever become a donor. There is that level of appreciation. We have talked before about working with the donor families and bringing their stories forward. Those are some of the ways in which we can engage. We certainly commit Kidney Care UK and our kidney family in Northern Ireland to doing everything that they can to work in that regard. I know that Jo-Anne, who will be watching this, will absolutely be a part of that.

Mr McKinney: Thank you for the opportunity. A lot of the conversation this morning has been about support for organ donation. It is important to reflect and underscore again that it is a soft opt-out system. There will be people out there who do not support it. Emphasis should be put on the fact that they have the absolute right to opt out. A system should be in place so that they can easily do so.

We have reflected on the fact that 90% of people in Northern Ireland support organ donation. A big percentage of people in Wales support a soft opt-out system. Only 6% of people in Wales decided to opt out, but it should be articulated that that option is available to people. Harmonising those two views — allowing people to fully opt out while allowing for the system to be maintained and efficient for the vast majority of people — is important.

The Chairperson (Mr Gildernew): It is appropriate, Máirtín, that the last word goes to you. If there is anything that you want to say in any closing remarks or whatever, please go ahead.

Mr MacGabhann: Unfortunately, Dáithí is at school, so he cannot close the session. We have a massive opportunity here; I am talking about the law change. I agree with everything that Fiona and Fearghal said about the personal stories and all that. The potential law change is a massive opportunity. I have said in many interviews that it may take a few years to come into effect, so we need to do it now. It needs to happen now, so that we can see the effects in the next, perhaps, five years instead of the next 10, 20 or whatever years. I appeal to our elected representatives to do the right thing.

I know that people will be watching today. I have a wee opportunity to say this: please consider, in the meantime, joining the organ donor register and having that conversation with your loved ones. The wishes of too many loved ones are being overruled because people are unaware of them. The conversation is just as important as joining the NHS organ donor register, so please do it.

The Chairperson (Mr Gildernew): Thank you, Máirtín. Go raibh míle maith agat. Thanks to each and every one of you and everyone who has campaigned to bring this to the stage that it is at now. I reiterate the commitment from us, as a Committee, that we will certainly play our part in getting the legislation on the books as soon as possible and getting those figures up. Please send all of our well wishes to David, Dáithí and everyone out there who is watching today with hope. We will certainly play our part in trying to deliver on that hope. Thank you all, and thank you panel.