Organ and Tissue Donation (Deemed Consent) Bill: Second Stage

Executive Committee Business – in the Northern Ireland Assembly at 12:00 pm on 20th September 2021.

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Photo of Robin Swann Robin Swann UUP 12:00 pm, 20th September 2021

I beg to move

That the Second Stage of the Organ and Tissue Donation (Deemed Consent) Bill [NIA 30/17-22] be agreed.

Photo of Alex Maskey Alex Maskey Sinn Féin

In accordance with convention, the Business Committee has not allocated a time limit for the debate.

Photo of Robin Swann Robin Swann UUP

I am delighted to finally be opening the debate on the Organ and Tissue Donation (Deemed Consent) Bill. It is by chance, but also entirely fitting, that I am doing so on the first day of this year's Organ Donation Week. The Bill broadly mirrors the provisions in the three clauses of the Organ Donation (Deemed Consent) Act 2019 in that it seeks to amend the relevant parts of the Human Tissue Act 2004. The Bill has been long-awaited by all involved in the organ donation process. There have been many challenges and delays in bringing it forward. However, the strong public support for the Bill can leave no doubt that this is the right time to make a real difference to people's lives in Northern Ireland.

I pay tribute to all those who have long campaigned for this move, including the family of young Dáithí Mac Gabhann. I also want to thank the person who first convinced me, almost a decade ago, that our organ donation laws needed to change. In December 2012, Jo-Anne Dobson tabled her private Member's Bill. At that time, it was a trailblazing piece of legislation, and it looked as though Northern Ireland was going to help to lead the way. I will not rehearse the details, but Jo-Anne's Bill was not given the political support that it deserved, and, in the years since, our organ donation laws fell rapidly behind those of all our neighbours. However, this Bill is a chance to put that right. The Organ and Tissue Donation (Deemed Consent) Bill will strengthen the current legislative framework around organ donation and will increase the current rate of consent in the small number of cases in which it is clinically possible for organ donation to proceed after a person's death. This will increase the overall number of donors and, ultimately, the number of life-saving organs available for transplantation.

My officials have considered in detail the legislative developments relating to organ donation in other jurisdictions in the United Kingdom, and Members will find that the Bill will introduce measures similar to those in place in Wales since 2015, England since 2020 and Scotland since March this year. The consent rate in Wales increased from 58% in 2015 to 70·7% in 2020, although the impact was not immediate and took several years to begin to take effect, following an extensive media promotion and information campaign by the Welsh Government. In England and Scotland, it is too soon to analyse the impact on the consent rates.

All the provisions in the Bill have been subject to a public consultation that was held late in 2020 and to extensive stakeholder engagement. Respondents to the consultation included key stakeholders from the statutory and voluntary sectors as well as the professional and clinical community, with responses to the consultation indicating overwhelming support for the Bill. Nevertheless, I acknowledge that there are a range of views within and outside the clinical and professional community that must be fully respected and engaged with as part of the ongoing discussion around organ donation. Whilst it would not be appropriate for me to speak on any clinician's behalf on this issue, I assure you that, as part of the consultation process, my officials have had significant engagement with clinical and nursing leads who specialise in organ donation and transplantation, and they continue to do so in preparation for the legislative process. I thank those who took the time to respond to the consultation or who attended any of the consultation events.

I also thank the Health Committee and its members for opening a call for evidence over the summer recess, as that should permit Committee scrutiny to commence later this month. As the scrutiny process begins, the Assembly can have confidence that the Bill has had the benefit of extensive stakeholder engagement and input from the various stakeholder groups, which met on many occasions to consider these policy proposals.

The Bill will mean that adults in Northern Ireland will be considered potential donors unless they choose to opt out or are excluded. Around 115 people in Northern Ireland are on the transplant waiting list, and, every year, around 10 to 15 people in Northern Ireland die waiting for an organ transplant. The Bill will help to reduce the number of people waiting for life-saving transplants. This will require new primary legislation to change the current system in Northern Ireland, under which people can choose to opt in or opt out of the organ donation register, to a new statutory opt-out system under which consent is deemed or presumed except in certain exempt circumstances or if a person has made a decision to opt out during their lifetime. That is sometimes known as deemed consent.

The main policy objective is to increase the current rate of consent in the small number of cases in which it is clinically possible for organ donation to proceed after a person's death. Doing so will increase the overall numbers of donors and, ultimately, the number of life-saving organs available for transplantation. It will be considered that everyone living in Northern Ireland agrees to donate their organs when they die unless they have confirmed otherwise by opting out of the organ donor register or otherwise making their decision known, or unless they are from one of the excluded groups.

It is acknowledged that legislative change alone will not achieve a sustained increase in organ donation consent rates. It can be a potential enabler to further progress towards this goal if it is combined with increased public awareness and knowledge. Countries with mature opt-out systems and high rates of consent — for example, Spain — tend to have high levels of public support and understanding of the benefits of organ donation and transplantation. The introduction of an opt-out system for Northern Ireland must therefore be combined with continued efforts to promote public and professional education and long-term behavioural change.

My Department will therefore continue to implement the commitments set out in its 2018 policy statement, in line with the statutory duty to promote transplantation, which was conferred on it by Part 4 of the Health (Miscellaneous Provisions) Act 2016.

The policy's overall objective is to promote a positive cultural and long-term change in attitudes and behaviours to organ donation. My Department is working with the health and social care (HSC) system, the public sector, which includes local government and the education system, and wider society to promote organ donation through a coordinated and sustained communication programme. Those commitments are not impacted on by the proposed move to a statutory opt-out system and will remain in place during and after the implementation of any new legislative framework. I have accepted the recommendation of the organ donation clinical advisory group (ODCAG), and I propose that the Bill should include a further statutory provision that will effectively enhance my Department's statutory duty, with specific reference made to promoting and reporting on soft opt-out on an ongoing basis.

Although the change in law will not increase the size of the UK donor pool, it has the potential to increase the consent rate in situations in which potential organ donors have been identified. They are generally persons for whom further intensive care has no prospect of bringing about recovery. Until recently, the consent rate in Northern Ireland and other UK regions has remained at about two thirds of potential donors. The strategic aim therefore is to achieve a sustained consent rate of 80% or higher.

The Bill sets out a number of exempt groups to whom deemed consent will not apply. Those people can still become organ donors after they die, but consent will continue to be sought from families. Those exempt groups are children and young people under the age of 18; adults who lack the capacity to understand the new system, such as adults with advanced dementia or severe learning difficulties; people whose identity is unknown; and people who are not ordinarily resident in Northern Ireland, including tourists, students and members of overseas armed forces. Organs donated for research purposes or when a transplant is considered novel or rare are not included in the Bill. There will also be strict safeguards in place, and specialist nurses will always discuss organ donations with families so that an individual's wishes are respected.

Forty-nine per cent of our population have now joined the NHS organ donor register, which is a steady increase from the 30% in 2013. Many more than that — consistently around 90% — say that they support organ donation. That means, however, that families are often left with the difficult decision when a loved one dies. Approximately one in four families decides not to proceed with donation when faced with that decision, most often because the family do not know what their loved one wanted or what decisions they had made. When families know what their loved one wanted, they are much more likely to honour the loved one's wishes. The effect of the proposed change to the current law will be to shift the focus on to the donation conversation, which expert NHS specialist nurses conduct with families at the end of life to establish their loved one's known decisions. Every other part of the end-of-life care pathway will remain unchanged and be conducted in line with current clinical and professional standards.

Under the Bill, the Government's public awareness campaign will help raise awareness of the new system before it comes into force in spring 2023, giving people the time to have the conversations that they need. Organ donation is deeply personal. It is a deeply personal decision for everyone, which is why we will be launching a public awareness campaign to ensure that people understand the new system and the choices that are available to them. Those individuals who do not wish to donate their organs will still be able to record their decision on the NHS organ donation register. They will be able to do that through the NHS Blood and Transplant (NHSBT) website or helpline. Under the new law, being an organ donor will still be a person's choice. Organ donation will remain a priceless gift.

I thank everyone in the House for their patience while I have provided an overview of the Bill. I hope that Members will agree that this remarkable change in legislation can proceed so that we can achieve the necessary changes to the organ donation process that will make a real difference to so many lives. It is important that everyone takes the time to discuss their choices on donation with their families and to register their wishes, whatever their preference may be. We envisage that it will take a year from the passing of the Bill in the Assembly until it goes live. That will allow us the time to revise and implement the codes of practice, train staff and ensure that the public are made aware of the change in the law. However, my Department already has a comprehensive plan in place for that. I am delighted to move the Second Stage of the Bill today.

Photo of Colm Gildernew Colm Gildernew Sinn Féin 12:15 pm, 20th September 2021

I welcome the opportunity to make some initial remarks on behalf of the Health Committee. I will outline the Committee's consideration of the Bill before speaking as my party's health spokesperson.

As the Minister outlined, the Bill aims to change the statutory framework for organ and tissue donation in the North to a soft opt-out or deemed consent system. The policy objective is to increase the current rate of consent in the small number of cases in which it is clinically possible for organ donation to proceed after a person's death. Organ and tissue donation is, as the Minister said, a very important and emotive issue. It really is a matter of life and death for our families and communities. If the Bill passes Second Stage, the Committee will welcome the opportunity to scrutinise this very important legislation.

One of the first informal meetings that the Deputy Chairperson of the Committee, Pam Cameron, and I had was with young Dáithí Mac Gabhann. Dáithí and his family have played an important role in getting this legislation to the Assembly. They deserve massive credit for putting the issue in the headlines and for being such great advocates of organ donation. I am keenly aware of many others who have played a part in bringing this legislation forward, and I thank them for their advocacy and promotion of organ donation. They include Jo-Anne Dobson, formerly a Member of the Assembly, and Fearghal McKinney and the British Heart Foundation (BHF), who have campaigned vigorously on this issue over the years.

On Wednesday evening, the Health Committee held a stakeholder event with many who have gone through the transplant process and those who worked to support them. We gained valuable knowledge, and it was brilliant to hear the first-hand experiences of people who had significantly benefited from a transplant, including some of the difficulties that they faced. I thank those who took part in that engagement, and special thanks go to representatives of the Patient and Client Council and the Assembly's engagement team for facilitating the event. I will mention later some of the discussions that we had.

As the Minister indicated, at the end of last year, the Department ran a consultation on the proposed legislative changes. The Committee was informed that there was broad support for these. The Committee wrote to the Department to outline the importance of publishing the outcome of that consultation as soon as possible. The Committee welcomes the Department's publication of the analysis of responses on Friday.

The Committee was briefed by officials at its meeting on 9 September on the principles of the Bill. The officials provided members with some of the statistics on organ donation and the reasons why the Department is introducing the legislation. The officials also outlined the various exemptions that would apply and how the Bill proposes an extension to the existing duty to promote and inform the public about deemed consent and the individual's right to opt in or opt out of deemed consent.

During the briefing, members asked a number of questions about the impact of similar legislation in other jurisdictions; the definitions in the legislation and how the Department planned to outline how definitions will be agreed; the role of educating under-18s about organ donation; and how exemptions will apply to particular groups.

As I mentioned earlier, last week, the Committee held a stakeholder event to seek the views of those who have benefited from organ donations in the past and of groups that support donors and recipients of organ donations. The event was very well attended by stakeholders and Members. We discussed questions around whether they felt that this proposal would increase the number of donors, how medical professionals discuss the issue with families and how we can promote organ and tissue donation in our communities. We received a wealth of information from that event, and it was clear that those individuals and groups were supportive of the proposed changes. We look forward to continuing engagement on the legislation, and we encourage people to respond to the Committee's consultation.

The Committee agreed to go out to consultation following the Bill's introduction at First Stage in July.

That was due in part to the very significant and heavy legislative schedule the Committee will have over the coming months. The Committee is disappointed that this Bill and other Executive Bills were not introduced sooner, providing the Committee with additional time to undertake its scrutiny role. It is frustrating that the Committee is in a position where it is considering very significant Executive Bills and private Member's Bills in a time-limited manner. Provided the Bill passes Second Stage, the Committee looks forward to engaging with stakeholders and to scrutinising the Bill in further detail.

If I may, I will make a few short remarks as Sinn Féin spokesperson for health. Sinn Féin welcomes and supports the Organ and Tissue Donation (Deemed Consent) Bill. This is Assembly politics at its best, where all of us, who are elected to this body, are doing exactly what the public say they want. The soft opt-out organ donation option is widely supported across our communities. I pay tribute to all the families that have campaigned for the measure for so long. Their dignity in, sacrifice for and unselfishness on the issue, which is so urgent to many of them, is to be commended. They never lost hope, and, at the end of the day, this is their accomplishment. Their determination and hard work have brought us to this point.

Soft opt-out organ donation will save the lives of our families, loved ones and friends. It is regrettable that there was a delay from the DUP to bringing the Bill forward, and it is also hugely regrettable that the threat to the Assembly could impact on the outworking of the Bill and on progressing it. The reference to the Bill having been brought to an advanced stage and then not coming through demonstrates the danger of not taking the opportunity to move forward on important issues. We all, as individuals, have a responsibility to talk to our families and loved ones about soft opt-out donation as an everyday occurrence and to normalise the practice so that each and every one of us has an understanding of the importance of signing up to be an organ donor.

Finally, I will return to the meeting that was mentioned that Pam and I had with Dáithí, Maírtín and Seph Mac Gabhann. That was our second informal meeting as Chair and Deputy Chair. I will point something out. I brought the drawing I have in my hand down with me today. It was pinned up on my noticeboard. It is hard to make out, but it is a drawing that Dáithí did the day he was in the office. Of course, when we were talking about organ donation and all the rest of it, all Dáithí wanted to do was to get on with living Dáithí's life. The picture is of Dáithí's favourite footballer, who happens to be Mo Salah. I am not sure how much of that is Dáithí's input and how much is Seph's, to be honest, but I do not want to put Seph under pressure. I will just highlight that Dáithí Mac Gabhann is a wee man who needs a heart, but all he wants to do is to get on with being Dáithí Mac Gabhann. It is up to us to do the right thing and to deliver for Dáithí and all those other people who so badly need and will benefit from organ donation.

Photo of Pam Cameron Pam Cameron DUP

I rise to speak on my own behalf to support the principles of the Bill. I do so after considered thought. I am very conscious of the sensitivities around the issues at the core of the Organ and Tissue Donation (Deemed Consent) Bill.

We all know someone who has required an organ donation to improve their quality of life or, indeed, to save their life. That life giving at a time when life is ending is one of the truly inspiring things about organ donation. New or better life can come as the result of the loss of another. Hope and maybe even a little comfort can come from sadness and grief.

Broadly speaking, we talk of presumed consent, which is consent that has to be actively withdrawn in order to stop organs being donated. At the core, there remains choice, rights and the ability not to be a part of this. I fully respect those who decide that organ donation is not for them. I encourage them to think again, but they are entitled to decide that, and that right must remain. Fundamentally, we must ensure that those who opt out are not stigmatised, pressurised or marginalised for exercising the rights that are made clear in the Bill.

The Bill includes a range of groups and situations that may arise, and I welcome that. The Bill will not apply to adults in certain categories or circumstances, including people who lack the capability to fully understand the consequences of deemed consent for a "significant period" before dying. No changes are proposed to the rules on consent to organ donation in respect of children under 18. It will not cover those:

"people who have expressly made a decision on consent before their death (either by recording their decision to give or refuse consent or appointing someone to make that decision on their behalf)".

It is clear that:

"deemed consent will not apply where a person in a qualifying relationship to the deceased (partners, certain family members or a friend of long standing) provides information that would lead a reasonable person to conclude that the deceased potential organ donor would not have consented to be an organ donor."

It is also clear that the Bill:

"does not propose any change to consent concerning transplants from living persons and the consent of the donor will continue to be required in those circumstances."

Those are welcome exclusions, but further clarity is needed in a number of areas. We must have a clear understanding of the significance of family consent, which, traditionally, is lower than the overall rate of support for organ donation. Furthermore, the definition of "qualifying relationship" in the context of family consent must be clarified. Who falls into that category? Is it open to challenge and dispute among families, for example? We must also have provision for when a family member cannot be reached under the Bill's approach. In Scotland, the presumption seems to be that donation can proceed. What will the approach be in Northern Ireland, where many people have children who have moved away to study, work or live and are not always contactable easily or quickly?

(Mr Principal Deputy Speaker [Mr Stalford] in the Chair)

Another key issue as we explore how this would work is the role of clinicians. We need to ensure that we protect our medical professionals from additional pressure, such as potential challenge. We need further clarity on whether clinicians are likely to move ahead with a donation even though someone in a qualifying relationship cannot present evidence that their loved one would not have consented. In the same vein, we need to be clear around the definition of "information" or "recorded evidence" that would be accepted for the purposes of demonstrating someone's wishes. It is a difficult time for those mourning the loss of a loved one; it is a time when additional stress and strain are not needed.

Photo of Peter Weir Peter Weir DUP 12:30 pm, 20th September 2021

I thank the Member for giving way. I join her in strongly supporting the Bill. She makes a very valid point about those who are in mourning because they have just lost a loved one. That is an incredibly stressful time for families. It can lead to very difficult conversations at times between clinicians and families. We need to ease that conversation in terms of where the clarity lies in the Bill, and, very specifically, we need to encourage that level of communication between potential organ donors and their families. That is critical. As someone who has signed up to the organ donation register, I do not know whether a long line of clinicians will be there for any of my organs, but I will leave that to their professional judgement. I would not like to see a situation in which my family said no, which is why I have had the conversation with my family.

We last debated legislation of this kind about six years ago. One of the elements of reticence about what was then, effectively, the embryonic Welsh model was about whether, from a practical point of view, it would lead to more or fewer donations. In many ways, we have scoped that out. The Welsh system's legislative changes had an impact, but one of its by-products was that it stimulated conversation among families. Does the Member agree that that communication among families will be, in many ways, as significant as the legislative changes in raising the issue?

Photo of Pam Cameron Pam Cameron DUP

I thank my colleague for that intervention. I agree wholeheartedly with that position. I remember looking at a similar issue on a previous Health Committee. I was very conscious that many clinicians were nervous around this type of legislation at that point. They were very keen to see the results from Wales and the impact that that would have on the availability of organs. Having that conversation is vital. The most important thing that we as individuals can do is to be very clear with our families, friends and loved ones so that, should the opportunity arise — the Health Minister said that it is probably a very slim opportunity — our wishes are fully known and protected.

I reiterate my support for the intentions of the Bill, but we need additional clarity on the points that I have raised and that colleagues around the Chamber will highlight in the debate.

Given that the rates of family consent for donation remain low, with 35% of families in Scotland and England having refused consent for donation between 2018 and 2019, it is vital that we know the wishes of our loved ones.

I have often talked about what I believe to be the most important issue around organ donation. Whether we opt in or out, for me the most important issue is awareness of the subject. The Bill provides a further opportunity to create debate and discussion on this most sensitive of subjects. That is a good thing, and, for most of us, the most important thing is to be clear on the wishes of friends and family at the end of life. Who among us would not want those wishes to become reality? I trust that this debate stimulates those critical conversations and that, once a decision has been made, it is clearly communicated for the peace of mind of all involved.

I put on record my gratitude and appreciation to the many individuals and organisations who have campaigned passionately to bring the Bill to this stage. I think in particular of young Dáithí Mac Gabhann and his parents, whom I met, along with the Chair, in my first meeting as Deputy Chair of the Health Committee.

On this, the first day of Organ Donation Week 2021, I urge everyone to join the organ donor register and have that conversation with your families. I call on the Health Minister to look at ways of ramping up organ donation education and awareness across all age groups in society. That is the most important ingredient in increasing the availability of organs. I suggest respectfully that we do not wait for the outcome of the legislation but prepare now to meet the needs of those who wait for organs today.

Photo of Cara Hunter Cara Hunter Social Democratic and Labour Party

I welcome the opportunity to speak at this important stage of the Bill.

Last week, the Health Committee had a briefing with the Patient and Client Council, with both recipients and those who have donated organs, and their families. It was a real eye-opener. We learnt, at first hand, about how the issue has impacted on both their lives and the lives of their families. I listened to David, father of Lucia, who talked about his daughter's journey with organ donation and the legacy and campaign that she leaves behind.

Another eye-opening aspect was the discussion of the barriers to organ donation — cultural, religious and some that even include superstition. I hope that, as the Bill progresses through the Assembly as quickly as possible, the Departments of Health and Education will remain committed to opening the conversation around organ donation, informing and educating, removing the social awkwardness that often looms around the subject and, especially, educating our under-18s.

The donation of organs and tissues after death helps to save and improve many lives in the North every year. It is incredible that one donor can transform the lives of up to nine people. If we look at the current statistics, we will see that, last year in the North, there were just 51 deceased donors, but their donations resulted in 113 transplants throughout the UK. In total, 87 Northern Ireland residents received a transplant. It is incredible to think of the lives that can be changed.

One of the 87 recipients , a young man named Michael from Ballykelly, happens to be a constituent of mine. Michael is not much older than me, but he has severe complications and damage to his kidney. He now lives with his kidney functioning at 8%. I find him truly inspiring. Every day is a battle for him, but he holds out hope that he will, some day soon, get the call. That is the heartbreaking thing about having issues with your organs: it is truly the luck of the draw. None of us know when we will need a donation or whether any of us will face the challenges that we are discussing. It is crucial that, wherever possible, we get talking with our constituents about it today to preserve life tomorrow.

There is a shortage of donors in the North, and around 115 people are waiting for a transplant. However, if we look at how the introduction of the opt-out system has changed things in Wales, we find that consent rates from deceased donors increased by over 12% in 2020.

Lastly, I thank young Dáithí and his committed parents for their ongoing, focused campaign on organ donation. We in the SDLP wholeheartedly support the Bill and hope that it contributes to a societal shift in getting families, parents and teachers talking and to people realising the importance of donating organs. Let us get talking, and let us get donating.

Photo of Robbie Butler Robbie Butler UUP

It is a real pleasure to speak, even briefly, on the Bill. Alan will speak shortly, but, as I am the first Ulster Unionist to speak, I will say that we support the Bill.

When I first became an MLA in 2016, I was allocated a role on the Health Committee. I was not the Health spokesperson; I was deputy to Jo-Anne Dobson. I was given the portfolio of mental health, which has been excellent. I worked side by side with Jo-Anne Dobson at that time. That was hot on the heels of the failure to get the Bill through the first time round. As the Minister did, I put on record my thanks to Jo-Anne Dobson for her absolute resolution to see change. Since leaving politics, Jo-Anne has continued on the quest to pursue the issue as a real priority to help to transform the lives of the many people across Northern Ireland who need it. I thank Jo-Anne. I am sure that she is listening.

This is only the Second Stage of the Bill, and, obviously, the consultation will come through, and we look forward to getting the detail of that, but I hope that anybody in the Chamber who still needs to be convinced will not need convincing by the end of the journey of the Bill and that it will receive unanimous support through its stages. For anybody who has any doubts as to why we need the legislation, I will list a couple of reasons. First, for any of us to remain in and to offer that option of the donation of organs, the opportunity to help others in life is the most important thing that any of us can do in any walk of life, whether that is whilst we are alive or at the point when we leave this place. Even the thought of knowing that you are offering the potential to help others should fill everybody with a sense of joy. Secondly, sadly, in many ways, there will always be those in need, whether that is through a diagnosed medical condition or through a moment of trauma in someone's life. There will always be people who need an organ, and they will be looking for a suitable donor. Sadly, those lists are growing.

As I said, people are waiting. Members have spoken about young Dáithí from west Belfast, and it would be remiss of me not to talk about him. I had the absolute pleasure of meeting him when Deirdre Hargey was the mayor in Belfast City Council. She had a reception for him just before Christmas; I think that it was on 27 November. I was able to hold him in my arms, which was great, as COVID was not a thing. His infectious personality masks the danger that that young boy is in. He is an absolutely beautiful young boy. He is a credit to his parents, and anybody who has met him will verify that. The social media platform that his mum and dad run is fabulous. You will see that he has met just about everybody across Northern Ireland. He has met people from all backgrounds. He has met loyalists, unionists, nationalists, republicans and people who do not designate as any of those. He met the First Minister, and I think that he was going to have a boxing match with him. Can you imagine how long that list is? Dáithí went right to the top of it to land one on the First Minister. I give credit to his family for the effort that they have put in over the years.

Another thing that is sometimes missed is that one donor can help more than one person. I will not get into the technicalities of it, but one donor can help many people. Think about the natural evolution of that: not only will the family of the person who will benefit feel good but, often, the family of the person who is deceased can benefit, even in the midst of the absolute grief of having lost their loved one, from knowing that part of their loved one is helping someone else to live a fulfilling and successful life.

For me, and others here may agree, it is about the hope that it offers, because, when you are on a list, there is no guarantee, even if we change the Bill, that the moment will happen. If we can give people hope, it will increase not only their days but the quality of their life to know that there are people out there who absolutely care about them and about their chances.

I will not say too much more, but I would like to pick up on something that the Chair of the Health Committee said. He mentioned that there is a fear that these institutions will fall. I do not want to dwell too much on it, but there is also the point that the institutions were on their knees for three years. I say this to the two parties: let us learn from the mistakes of our past. We have been through enough in Northern Ireland. Let us move on into the realms of what we can do together. No party will be found more willing than the Ulster Unionist Party to increase dialogue and ensure that we do our best to give the people of Northern Ireland the best life chances that we can.

Photo of Paula Bradshaw Paula Bradshaw Alliance 12:45 pm, 20th September 2021

I rise, appropriately at the start of Organ Donation Week, to support the Bill strongly and urge that it be passed swiftly. Although it should be uncontentious, it contains a provision for a delay of one year until it takes effect. I start by joining others in the Chamber in encouraging those listening to the debate to take two minutes to register on the organ donation register and to share that decision with their families. Parents may wish to consider that their children, though unaffected by the Bill as it stands, can also opt to be donors.

The Bill is essentially an amending Bill to do something that we really should have done a long time ago. It is in itself just one step of a journey that, I hope, will see Northern Ireland reach the international target rate of 80% of transplants from deceased donors. In Wales, that figure increased from 58% to 71% after similar legislation was passed, demonstrating not only the value of the legislation but the need for further work. That is made more significant by the fact that the comparable figure in Northern Ireland lagged behind at 64% pre COVID. That is why we have no time to lose. We need to move on swiftly with the legislation and get on with the awareness raising that is implicit in it.

The Bill has a set of exemptions that cover any concerns that have been raised with the Health Committee and Department over the years. It applies only to deceased adults who are resident full-time in Northern Ireland at the time of death and makes other allowances; in fact, in many ways, the legislation in and of itself will be less important than the awareness raising that comes from it.

Two questions arise from the debate. First, why does it take so long for the Assembly to get around to passing even simple legislation such as this? There is something fundamentally wrong with a system that makes obvious and life-saving steps take much longer than they need to. Those who threaten the ability of these institutions to pass literally life-saving laws over the next few months need to reflect on that. Secondly, what form will the awareness raising take over the year that has, understandably, been set aside for it, as well as for preparing for the legislative change? Previously, I have raised concerns about how the public have been left unclear about decisions that are made here, such as on the COVID regulations, and how they are affected by them. It is essential that we have a strong publicity package ready to go imminently when the legislation is passed. I note again that awareness raising should also cover the potential for anyone of any age, even if not covered by the Bill, to opt in. We may need to consider how that could be made easier.

Others have mentioned some of those who have campaigned for the legislation. I am grateful to have had direct discussions, going back many years, with our former colleague in the House Jo-Anne Dobson. I am thankful for the determination and guidance of the Mac Gabhann family. I also applaud the work of the British Heart Foundation and Chest, Heart and Stroke, both of which have campaigned diligently for many years. Many others have pushed for this quietly behind the scenes. Obviously, some of them will be watching the debate. Their input has been incredibly valuable as well. Lastly, I thank the departmental officials and others throughout the health and social care family for their work behind the scenes to get us to this point.

The draft legislation has my party's full and unreserved support, as, indeed, does Organ Donation Week.

Photo of Christopher Stalford Christopher Stalford DUP

Members, as this is Áine Murphy's first opportunity to speak as a private Member, I remind the House that it is the convention of this place that a maiden speech is made without interruption.

Photo of Áine Murphy Áine Murphy Sinn Féin

Go raibh maith agat, a Phríomh-LeasCheann Comhairle. I am honoured to make my maiden speech as an MLA for Fermanagh and South Tyrone. I pay tribute to my predecessor, Seán Lynch, for all the hard work that he carried out over the past 10 years.

The people of Fermanagh and South Tyrone have fallen foul of regional imbalance over the years on many local issues, including infrastructure, health, agriculture and lack of economic investment — the list could go on. That lack of investment dates back to partition, which still has a noticeable effect on many services. The people of Fermanagh and South Tyrone own many businesses, employ staff from their communities and contribute significantly to society as a whole. The time of constituencies west of the Bann, including Fermanagh and South Tyrone, being forgotten about is over. I will fight for additional funding to be made available to Fermanagh and South Tyrone that will help improve services for everyone. In my area, I will work to spearhead the new Lisnaskea health centre project. That project has been going on for years and has seen many roadblocks. The people of south Fermanagh deserve the same standard of healthcare infrastructure as everyone else in the North. The Minister needs to advance that project as soon as possible; we will not stand for any further unnecessary delays to it.

I am delighted to have been given the opportunity to speak on the Organ and Tissue Donation (Deemed Consent) Bill. I welcome the discussion and the work on it to date. It is the result of the determined work of so many, not least the families who are waiting so anxiously for an organ transplant for their loved ones. In my area, the Western Health and Social Care Trust had organ donations from four donors between April 2019 and March 2020, which resulted in 10 recipients successfully receiving life-changing transplants.

Organ donation provides many families with hope in their time of need and shows that there is light at the end of the tunnel. I know a number of recipients of organ transplants in my constituency. Recipients can spend months and years waiting and hoping for a suitable donor. Their physical and mental health often deteriorate over that period, making it an extremely difficult time for them and their loved ones. Organ donation is one of the most selfless things that one human can do to help another, and it is rightly referred to as, "Giving the gift of life". Research completed by the British and Irish heart foundations on the Bill showed that there is widespread support for the measure throughout the North. More than seven out of 10 of our constituents support a soft opt-out option that will facilitate easier organ donation processes. The introduction of soft opt-out organ donation will help to deliver an increase in the organs available for donation and to normalise organ donation as routine practice. The Bill will better reflect the views of the population and normalise the conversation about organ donation in our society. Ultimately, the policy objective of soft opt-out organ donation is to save more lives.

I am an organ donor, and I wholeheartedly encourage people to become organ donors and to discuss organ donation in their family and with their friends, so that we can normalise organ donation as an everyday gesture in our lives.

Photo of Christopher Stalford Christopher Stalford DUP

May I, from the Chair, be the first to congratulate the Member on making her maiden speech? It can be a daunting experience, especially when you look around the Chamber at some of the faces that are looking at you.


Photo of Paul Frew Paul Frew DUP

Mr Principal Deputy Speaker, I will take any compliment that you want to send my way


Thank you very much for that.

I speak on a serious topic that is literally a matter of life and death.

I would be the first in any queue or any group to talk about the merits of organ donation; about what it means for people who are able to live out a full life; about what it means to the people who will, in death, gift their organs to people who are not as well off as them; and about what it means to their family members, who have the honour and privilege of knowing that, when they pass, they will provide life for other people. Organ donation is a great gift. It is probably one of the greatest gifts that a person can bestow on another human being. It must be applauded and encouraged. I will add —.

Photo of Christopher Stalford Christopher Stalford DUP

Mr Frew, I am sorry to interrupt you, but can you move nearer to your mic to aid Hansard for the record? Thank you.

Photo of Paul Frew Paul Frew DUP

Sorry. It is not often that I am told that I am not heard, Mr Principal Deputy Speaker. That is a novel one.

Organ donation is precious, brilliant and a gift that we can give. I encourage every person to have the conversation with family members in order to make their beliefs known and placed on record with them.

The Assembly's powers have been diminished over the past year. The emergency powers that have been passed have taken away the power, role and remit of the House when it comes to health regulations. I am totally opposed to that continuing, because this should be a place where Members of the legislative Assembly take decisions on the law for our people. I therefore welcome the opportunity to speak on the Bill and on every other piece of legislation that we will pass from now until the end of the mandate.

I would not be true to myself, however, if I did not share with you, the Members who will make the decision, my concerns about deemed consent. Having heard Members speaking today, I think that there is confusion — I mean that respectfully — between legislation and organ donation. Organ donation is very good and very positive. It is one of the greatest gifts that a human being can bestow on another human being and is to be lauded. It has to be a given, and our population has to be convinced of that. The legislation is about deemed consent, however, and I am yet to be convinced that imposing deemed consent will add to the chances of increasing organ donation. I worry about that. I have grave concerns. I want to see organ donation levels increase. I want to see them rise. I do not want to see anybody die needing an organ. I genuinely worry about deemed consent for a number of reasons, one being ethical and another being the fact that I have not seen evidence that it works.

Photo of Paul Frew Paul Frew DUP

Yes, I will.

Photo of Paula Bradshaw Paula Bradshaw Alliance

I do not want to prolong this, but, in my speech, I indicated that it was clear that, when legislation was introduced in Wales, there was a dramatic increase. There are therefore jurisdictions not far from here that have demonstrated that, when legislation is introduced, organ donation goes up, so I do not get your point.

Photo of Paul Frew Paul Frew DUP

I have no problem with trying to clarify that point. The Minister has already said that, when it was introduced in Wales, there was a very slow uptake.

Photo of Robin Swann Robin Swann UUP

Will the Member give way?

Photo of Paul Frew Paul Frew DUP

I will in a wee minute, Minister, of course.

It was only after a publicity campaign that it worked. I will make this point before I let in the Minister. There seems to be confusion between organ donation, which is good and brilliant, and deemed consent. We talk about the Bill being brilliant when we should be talking about organ donation being brilliant. There is also confusion between the success of deemed consent and the publicity campaigns that can change the culture in a family setting. To me, that is the most important aspect. Once I have given way to the Minister, I will go on to outline why I think that deemed consent can diminish the culture change that we require.

Photo of Robin Swann Robin Swann UUP 1:00 pm, 20th September 2021

I thank the Member for giving way. He has moved on from the point at which I was going to interject. In 2016, we started that conversation in this place when Jo-Anne Dobson introduced her Bill. There was a structural change and a policy direction to start that conversation. We have not seen the increased number of donors come on to the register that has been seen in Wales. Wales started with a slow increase but has now got to a place far beyond where we would like to be in Northern Ireland. Back then, we had the opportunity to lead on this legislation and on the promotion of that real push and encouragement. It goes back to what Peter Weir was talking about: it is about starting that conversation, and this legislation has done that in all jurisdictions across the United Kingdom. That is now where we are, and it is about dovetailing those two parts: the conversation that brings about the publicity and, indeed, publication and the change to deemed consent, which has the added impact of increasing donors on our register.

Photo of Paul Frew Paul Frew DUP

I thank the Minister for that contribution, and, of course, I thank the Member across the way, but I am yet to be convinced that deemed consent is what has produced results across the world, including Wales. You could argue that our publicity around it may not be as good as that in Wales. It is not that the legislation is not as good; it may be just that the way in which it is publicised is what makes the difference.

The Minister spoke about the angst of family members having to make decisions about deceased loved ones, and every one of us should be aware of that. I hope that no one will ever be in that position, but we know that, inevitably, we will be. That must be one of the trickiest and most awful decisions in the world. I echo the Minister's words about encouraging every person to discuss with their family, in a family setting, in a comfortable place, the issue of organ donation. I fear that, with deemed consent, the conversation could be flipped to become not about organ donation but about deemed consent, and I fear that that could put many people off. I hope that I am wrong.

Photo of Paul Frew Paul Frew DUP

One second, Pat.

I believe that the legislation will pass through the Assembly. I hope that I am wrong about it putting people off, but I worry that I am not.

Photo of Pat Catney Pat Catney Social Democratic and Labour Party

I thank the Member for giving way. Having been on this earth for as long as some of us here have been, when I listened to your argument on the consent principle and family, I thought of my sister. When her young son, at the age of 17, went out as a brancardier with a diocesan pilgrimage to Lourdes, he found himself part of a terrible tragedy that cost him his life. His family flew out, but Laurence, God rest him, as a young man aged 17, had already consented. He did that at the school of Gonzaga. The point that I am trying to make to you is that that made the loss from that awful tragedy so much simpler for my sister and brother-in-law. Even though it was difficult, they knew about the consent being signed. As the helicopter came in to land at Lourdes infirmary, they switched off the life support machine. That gave the family some comfort, and it is important to take it into the argument that there is comfort in knowing that that young life lost benefited so many other lives. As a family, we still take great comfort from that. There should be no dispute about that and no choices. It was the right choice, and it is the right choice.

Photo of Paul Frew Paul Frew DUP

I thank the Member for his contribution and his powerful story. He is 100% right: consent is good. However, I have worries about deemed consent. I have outlined some of them with regard to flipping the conversation between organ donation, which is good, and deemed consent, with the confusion and angst to family members it can bring. I worry about that, because I want organ donation to increase. Presumed consent or "deemed consent", as it is labelled in the Bill, is a legislative framework within which all adults living in this jurisdiction, with the exceptions included, will be considered willing organ donors unless they actively opt out by joining a register. That changes the default position. Passing the Bill would effectively mean that the Assembly has decided that, without asking them, everyone in Northern Ireland wants to donate their organs on death. That is deemed consent. Some people might be fine with that — I respect that view — but I am deeply concerned that we in the House would hold that right. I worry about that.

I also worry on the grounds that I do not see the evidence that it works. We have talked about the publicity campaigns in other places, but we can also point to places where, when deemed consent was brought in, organ donations dropped. In some cases, deemed consent was reversed in legislation. We should not ignore those aspects of the debate. No one has talked yet about a downside to deemed consent. When we balance the issue out, we need to talk about the balance; we need to look at the pros and cons. Again, I stress that I hope that I am wrong, but there are places close to here — France, I believe — where organ donations dropped due to deemed consent.

I have another worry that, when the default position of deemed consent is in place, it is the Government who deem that consent. There is evidence that suggests that, when a population does not trust its Government, organ donation can drop. I would not want to be in a position of relying on the trust of any Executive or Government, elected or otherwise, and for that to correlate with organ donation. I do not want to be there. I want it to be a single issue; I want it to be a separate issue; I want it to be a life-giving gift from one person to another. I do not really want government to be involved in that, to be honest. I do not want government to deem that everyone wants to be an organ donator, even though I hope and wish that they do. I can wish many things, but I do not want to presume anything. That is why I have concerns about the Bill.

I thank everybody for listening to me. I suspect I am in a minority, and I realise there are many people who need an organ and are struggling at this time. I hope and pray that every person on the list — there are over 100 — gets the donation and the organ that they require in order to allow them to live their life out fully. I hope and pray that that is the case and that as many people as possible register on the donor list, become an organ donator and give the gift of life to others. I am not convinced that deemed consent is the way to promote and do that.

Photo of Carál Ní Chuilín Carál Ní Chuilín Sinn Féin

I thank the Minister for bringing the Bill to Second Stage. I will touch on some of the issues that Paul has raised, but I will keep that until the end.

As we speak, there are 115 people waiting for a transplant. I encourage Paul to read through the summary of responses to the consultation. It is very robust and completely transparent. As the Bill goes through the legislative process, there will be other opportunities to feed in. For anyone who has any difficulties or doubts about what it is, that information will certainly help to clear it up. Lá tábhachtach atá ann. It is a very important and historic day for the people who have been waiting for the legislation. I remember some of the difficulties around Jo-Anne's Bill. I am pleased that — I am sure that she and many others are pleased — hopefully, those difficulties are resolved and we will proceed with the Bill.

I am like a lot of other people. Many years ago, I made my intentions known to my family that, in the event that something happened, I wanted to be an organ donor, but I did not make the step of going on the organ donor register until March 2012, when Nuala Vallely died. She was only 41. Nuala was mother to Rachel. She was a great daughter and sister. I knew Nuala because, along with many others in the Falls Women's Centre, she looked after my son and grandson in the crèche. She was full of life and great at working with kids. There was another side to Nuala, as there are many sides to us all. She was a visible stalwart in Casement Park, where she took money, sold programmes and acted as a steward. She was really into games, physical fitness and activity. Tragically, she collapsed and died, but she had had the foresight to make sure that she was on the organ donor register. For me, that is typical of a lot of people. They want to do it for the right reasons. The tragedy of her death helped eight others. I remember being so struck that I got on to the register and became an official donor. Not just the GAA but Ulster Rugby, the IFA and others became involved in campaigns, as they have done over the years. It was great to see representatives of all those sporting codes wearing the organ donation colour, which was then red, and encouraging people to become donors. Then we had Shane Finnegan and Joe Brolly, and the altruism from Joe to Shane. That is the case for many. I know at least two former MLAs who became live donors to family members. I know others who are bone marrow donors. They became donors because they were on an official register. Eight people received what Paul and others have called the "gift of life" because of Nuala Vallely's wishes, and I am sure that many others have had other experiences with their constituents or people whom they know.

Most respondents to the consultation agreed that there needed to be legislation on organ donation. The Bill will also put the issue on a statutory footing, which has been missing. With regard to some of the issues that Paul raised — I am willing to give way — I think that it is unfortunate to use concerns around deemed consent along with a view that he holds on interference from government. I have heard that from Paul on other issues. Deemed consent is an important issue, because people need to know where the differences are and what decision to make. Clinicians, families and individuals need the Bill in order to make their work a lot clearer. The official organ donation register is there, but it is only one indication.

Photo of Paul Frew Paul Frew DUP 1:15 pm, 20th September 2021

I thank the Member for giving way. The debate has been good so far, and I say that to all the Members who have taken part. The Member talks about clinicians needing legislation in order to make their jobs clearer. I am not sure that deemed consent will do that. The issue is that family members and clinicians will still have the conversation at the time of the real, grave, pressurised trauma of a death. I am not sure the legislation makes that clearer. It makes it clearer that it is deemed consent and that we are all on a register until we opt out, but I am not sure that it helps the clinicians with organ donation at all.

Photo of Carál Ní Chuilín Carál Ní Chuilín Sinn Féin

I appreciate the Member for clarifying his position. I intend to keep the debate good-hearted. The Chamber is for agreement, for disagreement and for providing people with an opportunity to outline their position. Clinicians in particular — the specialists that they are, the compassion that they have, the gift that they have to give life to others — have been telling us for years that there is uncertainty that needs to be cleared up through legislation. Who are we to disagree? Disagreement is what this place is for, however.

People have said, including a surgeon whom I heard repeat it this morning, that transplants have continued to go ahead despite everything that has happened throughout COVID, albeit there were periods when it was not safe to do so. Our health and social care is in absolute crisis at the minute, and we need to see further investment from the British Government for the Department of Health and the Executive to address that. I am not being political. It is a fact: the Minister said it himself.

Services such as the transplant service have continued throughout the pandemic. The issue that keeps coming back to the Health Committee and to MLAs is that life-saving operations have had to be cancelled because of COVID infection rates. When rates surge, pressure is put on our hospitals' capacity, and particularly that of our intensivists, to deal with the situation. Anyone who comes out of a transplant operation needs those intensivists. Those are the decisions that people are making. I will use this opportunity to urge people to get vaccinated, not only to help themselves and their families but to protect people having other needed surgeries.

Unless there is a change in the trajectory of the virus, COVID will be further exposed. Health and social care staff are telling us that, in addition to the crisis in health and social care, they are now implementing their winter surge plans. Minister, we have seen the COVID recovery plans, but we have not seen the winter surge plans yet. We already know that the gaps in health and social care staffing that were there before COVID have been exacerbated because staff are burnt out. They are working, living and operating on fumes; the tank is empty. They are giving, giving and giving again. The transplant staff support everyone else, and vice versa.

I appreciate that the question of deemed consent is really important. However, if the legislation were to go through, if more awareness were to be created and even if more living donors were to give, it would be an absolute sin if we were not to have the capacity. Health and social care are under huge pressure.

Photo of Paul Frew Paul Frew DUP

I thank the Member for giving way. This could be a positive point, and I rely on the Minister's knowledge and hope that he will be able to contribute on it later. As far as I know, we have a very high rate of living donation, which should be applauded. The Minister might contradict me later, but I hope not. I hope that it is true. If so, we in Northern Ireland should all be proud of that.

Photo of Carál Ní Chuilín Carál Ní Chuilín Sinn Féin

My understanding is that we have a very high rate. The Minister and, I am sure, his officials will also tell you that the staff, the intensivists, the capacity and the sites in which operations are carried out need to be protected. They also need to be invested in on a consistent basis. If any piece of that jigsaw is missing or under pressure, it has an impact on it all.

Bringing the Bill forward is absolutely the right thing to do for Dáithí, Máirtín and Seph and, I am sure, for many others. I thank the British Heart Foundation and the Irish Heart Foundation for the information that they consistently brought forward.

Robbie made the political point, and this is a political Chamber. It would be absolutely inexcusable if this Bill did not see its full passage because people felt that this institution was not where they wanted to be. Robbie made that point in terms of the two big parties. That is, I suppose, a go-to place for parties that are not Sinn Féin or the DUP. At this stage, we need to ensure not only that this Bill survives its passage and gets through, and that these institutions are here so that that happens, but that families watching and listening to this debate have confidence in us to do our very best to pass not only this but other pieces of legislation that are waiting.

We need to get the money to help our health and social care system, which is in absolute crisis. We now have the winter pressures on top of everything else. We need to get the money from the British Treasury to give to health and social care, and we need to make sure that it helps the people in most need. I, along with many others, have consistently pointed out that, when it comes to keeping people well, safe and alive, they have to look no further than at our hospitals, GPs, out-of-hours, nurses and all those people — everyone involved in health and social care. They do not need anything other than our support, and they need that to be emotional, political and financial.

I support the Bill at its Second Stage and look forward to further debates and the Bill going through its full passage.

Photo of Mark Durkan Mark Durkan Social Democratic and Labour Party

I welcome the chance to speak on this important legislation. It is a Bill that will not only change lives but literally save lives. It will, no doubt, be of incalculable value for so many families that have fought tirelessly to see the North implement this soft opt-out organ donation system in line with those already in operation in England, Scotland and Wales.

I congratulate the tireless campaigners who have worked so hard to see this Bill introduced in the Assembly. Of course, no discussion on organ donation in the North would be complete without paying tribute, as others have, to young Dáithí Mac Gabhann, who has been waiting almost four years for the gift of a new heart. Dáithí's parents, Seph and Máirtín, have never let up in their campaign to raise awareness of and to change the law here on organ donation.

Many others, too, have done so much to raise awareness. I pay tribute to the family of a young Belfast woman Rachael Molloy, whose aunt Catherine Matthews will be known to many of you. She works upstairs for the SDLP. Rachael was 22 and full of life. She passed away suddenly earlier this year. Fortunately, she was able to give the gift of life to others. Donation is not just about what you can give; it is also about what you can get: some consolation at a time of massive loss.

This legislation is long overdue and will lead to many more lives being saved. As the previous Member who spoke said, there are, at present, 125 people on the organ transplant waiting list here. That is 125 individuals and their families waiting desperately for news that a suitable donor has been found.

Why is action needed now? Research from the British Heart Foundation has highlighted that over 90% of citizens here support organ donation, yet only 50% have registered their interest on the NHS organ donation register. While I recognise that a great deal of effort has been made by the PHA and others to improve public awareness and to encourage people to take time to talk about their wishes with their loved ones should the unthinkable happen, the reality is that many of those decisions ultimately go unregistered.

Every year, on average, 14 people in the North pass away awaiting transplant. Bearing that in mind, the logical next step, in our view, is the move towards a soft opt-out organ donation scheme. Under the Bill, it would be assumed that everyone is willing to donate unless they express otherwise or formally opt out. This proposal, and the inclusion of consultation with family members, taking into account their faith and beliefs, ensures that the legislation is as sensitive and person-centred as it needs to be. It is not a move that needs to be regarded with fear or apprehension. Rather, it is one that ensures that individual beliefs remain an integral cog in the process.

It is clear that this legislation calls for a changing not just of hearts but of minds and culture. However, we have borne witness to a palpable shift in attitudes within the past few years, again thanks, in the main part, to families coming forward to share their first-hand experience of organ transplant waiting lists. In doing so, they forced people — many of us — to imagine life in their shoes, even for the briefest of moments, and caused us to re-evaluate our choices and to open dialogue around organ donation. That conversation might not have taken place or even been considered otherwise. That is all that any of us can ask. All that this legislation can do is call on people to think about their choice and to give the gift of life. There is no more time to waste.

The Bill must be progressed through the Assembly as quickly as possible so that we can change the lives of families everywhere in Northern Ireland who have been waiting far too long for this life-saving system. I concur with the comments from the Member who spoke previously on the importance of a functioning Assembly to deliver this and many other important pieces of legislation. We were without decision-making or legislative powers for three years. God knows how far behind we are already. We cannot afford to fall further behind.

Photo of Pat Sheehan Pat Sheehan Sinn Féin

Tá mé iontach sásta a bheith ag labhairt sa díospóireacht seo inniu. I welcome the opportunity to speak today on the Bill. I do not intend to speak for too long. Almost all Members who have spoken have referred to the Mac Gabhann family — Maírtín, Seph and their son Dáithí. I first came into contact with the family a few years ago. They live in my constituency of West Belfast. Over the past number of years, they have travelled far and wide and met many people, from all perspectives, to raise awareness of organ donation. Robbie Butler referenced the large number of people whom they have met. I actually went to Leinster House with them to meet the then Health Minister, Simon Harris. I was also at the event that Robbie mentioned in the City Hall, where Deirdre Hargey, as mayor, held a reception for the British Heart Foundation. Of course, the star performer there was young Dáithí.

Dáithí also attends the same school that my two daughters were at, so I bump into him and the rest of the family regularly. I remember Maírtín telling me when Dáithí's condition was diagnosed and the family were told that he needed a new heart. He immediately became almost obsessed with the issue of organ donation and did a massive amount of research into it.

He decided, not in a selfish way, to try to get a donation for Dáithí — of course, the family obviously also want that — but also to go about raising public awareness of organ donation in general. Everyone who has met the family or who is aware of them will agree that they have done an immense job in raising public awareness about organ donation. They should be commended for that.

I intended at one stage to bring forward a private Member's Bill on organ donation during this mandate. Thankfully, the Minister stepped in and decided to bring forward his Bill. I commend him for that.

As mentioned by a number of Members who have spoken, the elephant in the room is whether these institutions will remain in place for long enough for the legislation to get through the House. A number of Members also referenced organ donation as a "gift for life". That is what it is. We know that people on the waiting list for organ donation will die without those organs. It will be young Dáithí's fifth birthday next month, and he has been on the waiting list for three years. His condition is stable, but that could change in the morning, and there is no guarantee that there will be a new heart for him when he really needs it. I ask people in their moments of reflection to think about that gift of life and how important it is, not just to Dáithí Mac Gabhann and his family but to all those families who are waiting for organ donations and who are on the waiting list. They should think about that when they make decisions about whether these institutions continue.

I will leave it at that. I agree that it is not just a change to a soft opt-out organ donation system that is required. We also need a publicity campaign to run in tandem with that. At an individual level, we also need to communicate our views to our families. All those things go together. In the time ahead — hopefully, we can get the legislation through the House — I am sure that the Minister will take account of all those things.

Photo of Maurice Bradley Maurice Bradley DUP 1:30 pm, 20th September 2021

I was not going to speak on the Bill, but I decided to after listening to the debate. It is a very emotive topic, and a good and healthy debate has taken place so far on the Bill.

I am an organ donor and have been for a number of years. I made a conscious decision to become a donor in my 20s and have maintained that ever since. I still carry an organ donor card. My family are aware that I am an organ donor, and if any of my organs may help another who needs a donor organ, which could be a matter of life or death for them or help their quality of life, I would like to think that some of my organs could be of benefit to them. I appeal to people in the Chamber and throughout Northern Ireland who are in good health to think about becoming organ donors. It is the right thing to do. I believe in it passionately. None of us knows what tomorrow may bring, but if in death I can help a life, it is a choice worth making.

Signing up for organ donation was a very personal decision that I took when it was a little-known thing to do and not fashionable. I appeal for better education around becoming a donor. I believe in it, I support it and I would love to see an increase in people choosing to become organ donors. It was my choice. I believe in choice, and I would like to see better education on the benefits of becoming an organ donor. If a life can be maintained from a death, it is worth it, but it has to be a choice.

Photo of Pat Catney Pat Catney Social Democratic and Labour Party

The Bill is the result of a long campaign by a number of hugely dedicated individuals who have put their life and soul into bringing forward a change in law in Northern Ireland. There is widespread public support for that change. There is an increase in the number of people who choose to be on the register across the UK, with Northern Ireland being the only place without a deemed consent system. The time is now to get the legislation passed as soon as possible, and I thank the Minister for bringing it forward.

Other Members have stated how important it is that the legislation be passed. Some have called it the elephant in the room. I was elected here about four years ago, and, for three years, this place sat empty. That was not my choice. Rather, it was forced on me. A lot of legislation is being passed in the Chamber, and a lot of private Members' Bills are coming through before we finish the mandate. I ask those who pulled the Assembly down before or who are threatening to do so to think long and hard. It is about working together and trying to get legislation through. I am not going to give a lecture to anyone, but think long and hard before making any reckless decisions.

There are currently 115 people on the transplant waiting list. Those are 115 lives that we can directly save by passing this legislation. It is a situation that, unfortunately, happens every year. Eleven people who were on the waiting list in 2020 lost their life. We have gone through 18 months of unimaginable loss, but those 11 lives could have been saved had we brought forward the legislation. An opt-out system could directly help 180 people a year and would boost our overall consent rate to achieve, hopefully, the gold-standard rate of 80%. Our rate of consent has not moved significantly in years, so we must act now, folks.

I congratulate the tireless campaigners who have worked so hard to see the Bill be introduced in the Assembly. It is now on us to knuckle down and get it passed. That is the job that we are elected to do. We are elected not to squabble over nonsense but to make decisions and pass legislation that will improve and, in this case, save people's lives. More of that, please.

Photo of Gerry Carroll Gerry Carroll People Before Profit Alliance

I thought that there were still more Members to speak before me. I am happy to speak in favour of the Bill. Simple, easy-to-follow legislation on organ donation is long overdue. Too often, when it comes to issues that may be difficult to talk about, people do not know how to approach or raise them. In that context, where there is no reason or need for exemptions, the state should make the assumption that it is right and proper to proceed with organ donation.

In the past year and a half, people have taken extraordinary measures for one another and their public health. In my view and that of others, this legislation is in a similar vein. It indicates quite strongly that our family members, when faced with a tragedy and an untimely death, can play an important role in giving hope and life to others. That, in and of itself, is a strong and powerful thing. It is an incredible act of solidarity that is, it is worth emphasising, reason enough to support the Bill.

Some years ago, I, as did Carál Ní Chuilín, raised in passing the issue of organ donation with family members. I told them that I would gladly wish that my organs be donated. I am sure that others have had that conversation casually in off-the-cuff chats with loved ones. To be honest, however, it was not until I saw the campaign led by Dáithí, Máirtín and Seph that I, along with many thousands of other people, made the decision. I am happy to say is deontóir anois mé.

That campaign led to me and many other people signing up to be an organ donor. That really goes to show how change is made in society. To put it mildly, this House often moves at a snail's pace, and it is campaigns out on the streets and in communities that force issues on to the agenda. In that vein, I pay tribute to those campaigners, including and especially wee Dáithí, Seph and Máirtín. What they have done goes to show how change comes about. It is those campaigns and that activism that cause those conversations to happen in workplaces, amongst families and friends and so on, bringing about change.

In the past year, there has been a lot of discussion about COVID and about medical evidence guiding the decisions that are taken or not taken by Ministers. Although a handful of people have claimed to be acting on medical or scientific advice in disputing the real dangers of COVID, there is, for the most part, an overwhelming consensus — amounting to at least 90% — that Governments need to take action on COVID because it is a threat to public health. This is a separate issue, but a similar point guides it. I understand that there is pretty much unanimity across the medical field in relation to organ donation legislation being not only required but essential to increasing the possibility of donation for so many people. As I understand it, the clinical lead for organ donation is in support of soft opt-out being in legislation. Unfortunately, too many people have that conversation at a late stage, when loved ones are dying or have passed away.

If people have strong reasons for opting out, they can do so. There are ethical reasons — I do not fully understand them, to be honest — for opposing organ donation, and there is support for people to opt out. It is important that we provide that. In some cases, there is reason to oppose the state taking strong measures and trying to grab power for its own interests to harass and intimidate, to persecute people, to spy on citizens and so on and so forth. In those cases, there should be opposition to the state getting more powers, but that is not what this is about. As people said, this Bill is about giving support and hope to individuals and taking a public health policy measure to support people who need organ donation.

For those reasons, I do not buy the so-called libertarian argument. Where does it stop? Do you oppose legislation on road safety, on health and safety and on medical interventions in hospital unless there is full consent, whatever that is? There are important arguments that need to be challenged. Those myths need to be dispelled, and we need the Bill to proceed as quickly as possible. I am therefore happy to support it going forward today.

Photo of Dolores Kelly Dolores Kelly Social Democratic and Labour Party

I am very pleased to be able to participate in this debate. I give my full support to the Bill. In doing so, I pay tribute to all the tireless campaigners who brought us to this stage, none more so than my constituency colleague Jo-Anne Dobson, who is also a party colleague of the Minister and a former MLA. Jo-Anne, a kidney donor for her son, is very familiar with and passionate about this issue, and I pay tribute to her. She worked on this for many years. Unfortunately, is she not here today to see the Bill, hopefully, go through the House.

I heard Mr Sheehan's contribution, as did my colleague Pat Catney, in which he told the DUP what the threat to pull down the House might do to this legislation. I must say that that is a bit rich coming from that quarter, given that this Bill could presumably have been before the House some three years ago. Indeed, three or four months ago, there was a further threat, from that same quarter, to pull the House down. Sinn Féin and the DUP must look very closely at themselves in terms of what they do for their own selfish political interest and that which needs to be done for the greater common good.

At this stage, I also pay tribute to the family of Rachael Molloy, a 22-year-old finals student who was doing her teaching certificate. She was the niece of Catherine Matthews, whom many of you know. Catherine is our party manager and administrator in the offices at Stormont, and Rachael was her much-loved niece who, tragically, died from a blood clot on 27 March 2021. Her family, who are grieving tremendously, are comforted in the knowledge that her decision, which she had made known to the family, was that she wanted to be a donor. Through the donation of her liver and kidneys, she has given new life and new hope to three others: a man in his forties, a woman in her forties and a young boy have all benefited. There is no doubt that their lives have changed and been enhanced by the bravery of the Molloy family. I pay tribute to her parents, Paul and Jacqueline, for having the courage to fulfil Rachael's wishes.

Photo of Peter Weir Peter Weir DUP

Will the Member give way?

Photo of Peter Weir Peter Weir DUP

I welcome those remarks. There is an old saying, although I do not know what culture it is from, that you are truly dead only when those whose lives you have touched in your lifetime are also dead. Is that not shown particularly in organ donation whereby we see people whose lives would otherwise have been cut short living on?

Photo of Dolores Kelly Dolores Kelly Social Democratic and Labour Party 1:45 pm, 20th September 2021

Thank you for that intervention, Mr Weir. Much comfort has been brought to those who are still very much grieving the loss of such a young person from knowing that others are able to live a much fuller and higher-quality life. That does not take away the pain, but it helps them to cope better. They have pride in their loved one and in the courageous decision that they made when faced with tragedy because of accident or injury. I pay tribute to all of them.

Minister, I hope the Bill goes through. It is certainly needed. It has the full-hearted support of the SDLP.

Photo of Joanne Bunting Joanne Bunting DUP

I hope I can retain my composure. This is not an easy subject. It is highly emotive and sensitive. As Members have said, it boils down to life and death for people. It is heartbreaking to hear the personal stories and to have them brought to your attention. For an awful lot of people, this is a head-and-heart call. It is really tough. My starting point is that I carry a card. I am on the register, but, like Paul, I am cautious. There are many things about the matter around which we in the House can entirely unite. One of them is this: we want as many people as possible on the donor register. We want a huge awareness campaign that brings the issue to people's attention and allows for a conversation about what happens around death, dying and donation.

It is important to reiterate that the concerns of those of us who have them are not based around that. We are all coming to this with an open heart and the best of intentions with a view to increasing the numbers. I am grateful to Members for the respectful debate. I trust Members will understand that, for some of us, it is not easy. It is not about obstruction. For many of us, the power of the state and the right the state has over our bodies is not a small thing. Rightly, people have sacrificed much over the past 18 months for the sake of others. I have no doubt that many people who have concerns in that regard will still sacrifice much for the safety of others, will still be on the register and will still want to see the number of people willing to donate increase. That is not what this is about. It is important that it is on the record that deemed consent is not an easy position for people to come to. It is a big step for any country. It is not a decision to be taken lightly or ultimately without giving consideration to our thoughtfulness on the issue versus our emotions on it. I have concerns about what it means and where it goes, but —

Photo of Paul Frew Paul Frew DUP

Will the Member give way?

Photo of Joanne Bunting Joanne Bunting DUP

— in having those concerns, I support donation. I want it to be clear that, as we go forward in the debate and to the next stages, which are inevitable, those who express concern are not doing so from a position of not supporting the register, a campaign and all those things. It is important that we do not lose sight of that. The views that are held are held strongly and genuinely. They are to do with freedoms and liberties in society and the power of the state. Those are not small things.

Photo of Joanne Bunting Joanne Bunting DUP

I will give way first to Mr Frew and then to Mr Carroll.

Photo of Paul Frew Paul Frew DUP

I thank the Member for giving way and appreciate her considered thoughts and words. I agree with her that all in the Chamber seek solutions. While the jury is still out and there is no proof of the effectiveness of deemed consent, we know from evidence throughout the world that public awareness and the provision of specialised nurses are the key drivers of organ donation. We should try to encourage and promote those elements. Public awareness and the provision of well-trained specialist nurses will convince people about organ donation. Those are the solutions that the House seeks.

Photo of Joanne Bunting Joanne Bunting DUP

I absolutely concur with Mr Frew.

Photo of Gerry Carroll Gerry Carroll People Before Profit Alliance

I thank the Member for giving way. I listened to her carefully, but I have to point out an inconsistency. There is a pick-and-mix approach. Her party is obviously content with heavily regulating women's healthcare and has no issue with that. However, when it comes to this issue, the party seems —

Photo of Christopher Stalford Christopher Stalford DUP

The debate should refer to the content of the Bill. I have been broad in my interpretations, and Members have, on occasion, veered far from the content of the Bill. Members should keep their remarks to the content of the Bill. I think that Mrs Bunting got the point that Mr Carroll was making.

Photo of Joanne Bunting Joanne Bunting DUP

Thank you, Mr Principal Deputy Speaker. I got the point, and I am glad that you brought the Member to order. I do not want the debate to degenerate into that conversation. I do not think that the principle that I adopt on either of those issues is inconsistent. For me, life is always precious, which is why I am on the register. Life is precious from whenever it begins, and that is the subject of debate.

I want to be clear to the House and have it on the record that, for those of us who struggle with this issue — that is what is happening — this is not about opposing the conversation or organ donation; it is about whether the state has rights over our bodies. Ultimately, some of us need to understand better or be convinced of the merits. The current position is that, if you are on the register, your next of kin can still say no. With deemed consent, that remains the case. People need to understand the distinctions and differences if, ultimately, the position does not change at the point at which a decision needs to be made.

Those are my thoughts, and I trust that the House will bear it in mind, when the time comes, that that is where some of us are coming from.

Photo of Alan Chambers Alan Chambers UUP

The Ulster Unionist Party fully supports moving towards a soft opt-out system. I am glad to see the Minister delivering on one of our important manifesto commitments. The tragic reality is that Northern Ireland now has the most outdated organ donation system in the United Kingdom. That did not need to be the case. Jo-Anne Dobson's private Member's Bill, which proposed that everyone should be on the organ donation register unless they took the simple step of opting out, was blocked, disappointingly, at the last moment by some parties in the Chamber. Wales already had that system in place.

Photo of Peter Weir Peter Weir DUP

Will the Member give way?

Photo of Peter Weir Peter Weir DUP

I come from very much the same side of the argument as the Member, but, factually, Mrs Dobson's Bill passed its Second Reading in the House. At that point, clinicians raised considerable concerns about the content of the Bill. There was no further vote on the Bill, and Mrs Dobson withdrew it.

Photo of Alan Chambers Alan Chambers UUP

Thank you for that. However, there was understandable and significant anger across charities, patients' groups and campaigners in 2016 when Jo-Anne was forced to withdraw her Bill. As a result, Northern Ireland has gone from having once been a trailblazer on organ donation laws to now having the most archaic system anywhere in the United Kingdom and Ireland. The Bill will put that right.

Organ donation saves lives, and increasing the rate of organ donation would allow our medical staff to save even more lives in Northern Ireland. Organ donation is one of the most selfless acts of kindness that one person can do for another. Whilst it continues to have strong public support, unfortunately there remains a shortfall between the number of donors and the number of organs needed each year. Whilst public support for organ donation across Northern Ireland remains high at around 90%, just over 40% of the local population are on the organ donor register.

Tragically, around 14 people pass away each year on the waiting list. Lives are being needlessly lost. As of 1 June 2021, there were 125 people waiting for an organ transplant in Northern Ireland, 16 of whom were waiting for a new heart. That is a huge number of people who could have not only their quality of life drastically improved but a better outlook in their life expectancy.

The soft opt-out scheme will not legally tie everyone into having their organs harvested if they have omitted to opt out. The final decision will be made by the close family of the potential donor. They are best placed to know what the donor would have wished.

When a family loses a loved one, especially a young person, the only comfort that they have left behind about the life of the deceased is the memories of family holidays and occasions, as well as, perhaps, the academic, sporting and workplace achievements of their loved one. In many cases, when a family has lost a member, especially when the circumstances of the death are sudden, unexpected and tragic, you will hear parents, sadly but with a quiet sense of pride, announce that the organs of their loved ones have given hope and life to other families who had a family member waiting for a transplant. It must surely be a point of comfort for the family of the donor to know that their loss has given others hope. In Mr Catney's intervention, he explained the comfort that it gave to his family.

I hope that the Bill can become law in this mandate. We owe it to all those patiently waiting for a transplant that will change their lives dramatically to ensure that that happens after timely due process and the scrutiny of the Assembly. It is a fact that any delays in delivering the Bill could, unfortunately, cost lives. Is there anything more important than preserving life?

Photo of Christopher Stalford Christopher Stalford DUP

As Question Time begins at 2.00 pm, I suggest that the House takes its ease until then. When we return to the debate, the next Member to speak will be the Minister of Health.

The debate stood suspended.

(Mr Speaker in the Chair)