Robin Swann
North Antrim · Ulster Unionist Party · Northern Ireland
“I thank the Minister for his detailed statement. I know how passionate he is about the subject and how many times he has brought it to the Executive.”
“It has been reported that today will potentially be the warmest day of the year. As we move into the summer and our summer holidays, I want to raise public awareness of wildfires across Northern Ireland, which have been detrimental to farmland and our environment over the past number of years.”
“Wildfires are still having a detrimental impact on our environment and, occasionally, on livestock, but that reduction shows the impact of the Northern Ireland Fire and Rescue Service's proactive approach to educating the general public and engaging with rural communities and schools on its fire safety message, which is to stay alert, not…”
“There has been a lot of talk of sport in this place over the past few days, with everybody concentrating on UEFA. One sport that is going on across Northern Ireland at the minute is cross-community and goes across all age groups without fear, favour or distinction: pigeon racing.”
“I want to put on record that, since this place passed the amendment that recognised pigeon racing as a sport under the 2016 Act, over the past five years, pigeon racing clubs across Northern Ireland have been able to obtain £113,000 of rates rebates through the sports and recreation rate relief, allowing many of those clubs to continue ra…”
“There was much coverage on social media over the weekend of an incident in Staines in England, in which a police car rammed a young calf to bring it under control. It has restarted the conversation about animal cruelty. <BR /> <BR />I am dealing with a specific case in my constituency.”
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“I thank the Member for that contribution. I also thank him for his contribution to the wider debate in the public sphere, which will continue in Committee. <BR /> <BR />If I hear the Member correctly, he is saying that he is opposed to what the Bill is about: deemed consent. When the Deputy Speaker calls the vote, the Member will have the opportunity to oppose what he sees as the crux of the Bill. We have had the debate. I ask him not to divide the House over it, but it is his democratic right to do that if he has a concern about what deemed consent means. To me, it is the next iteration of the conversation around organ donation in regard to where we have been. We have done the promotion and have done the sell, and we are now doing what is being done in other parts of this United Kingdom by moving deemed consent into legislation.”
“I thank the Member for his point. He was not here for the earlier debate, but the number of times that Dáithí, Máirtín and Seph were mentioned is testimony to their work to promote the legislation. They have also spoken about where we are and how we need to get on with this work: I join in that call. Anyone who has met Dáithí knows the power of that young boy's spirit and the life that he has. It is incumbent on us to do all that we can to progress the Bill.”
“I thank the Member for the question. I did not hear the contribution. The consultation received 1,917 written responses. They included 108 from individuals identifying as health and social care professionals, of whom four said that they were opposed to organ donation or statutory opt-out, citing perceived intrusion by government. That issue was raised and will, I am sure, be taken forward in Committee. Fifteen responses were received from health professional groups or organisations, and none of those expressed opposition to the proposed move.”
“Those who said that they were not convinced or needed to hear more should listen to the evidence that will come to the Health Committee, where the detailed conversations and question-and-answer sessions can be had. Look to the responses to the consultation that my Department conducted and where we are today with regard to that.”
“It is what I want to do", but only 46% have got to the stage of actually doing so. Colleagues in the House indicated that they had taken that step. Unfortunately, that is what makes the further conversation that families have to have with clinicians and other family members about the consent principle necessary, and that, with the clinical experts and support nurses who come along with the legislation, will get us from 46% to, hopefully, 80% or even to the 90% that we need. <BR /> <BR />Joanne Bunting said that she came to the conversation with an open heart. That is where some Members in the Chamber and some in the Executive were at an impasse. I say this: come to the conversation and debate not just with an open heart but with an open mind.”
“Regarding that ask to the British Exchequer to supply the money to our health service, the Barnett consequential is there. I have been made aware that it will be transferred to the Executive. My ask to Carál, then, is that she speak to the Finance Minister in order to make sure that whatever Barnett consequential comes from that is ring-fenced and supplied to the Health Department for what we need to and what we can do. <BR /> <BR />Mark Durkan, in expanding on Carál's point about the need to move the matter into legislation and put it on a statutory footing, was really making the point about those who say that they want to be and should be an organ donor but have never quite got round to it. That is why surveys show that up to 90% of people say, "Yes, I want to be an organ donor.”
“She is not here, but she will be listening, so I will give her an update on our renal transplant programme. The Belfast Trust has confirmed to me that the backlog of people waiting for transplants that occurred when the service was paused has been cleared, with the exception of two patients who have been assessed as currently unsuitable for transplant. From 3 March to 9 August, the Belfast Trust carried out 26 live donor and 22 deceased donor transplants, and it averaged 3·4 transplantations per week. That work has started again and is ongoing. <BR /> <BR />Carál quoted my words back to me a number of times — that can be dangerous in this place — about my Department's need for financial support. It is not just about the money, but the money will be useful, and it is needed.”
“It is not just about where people sit on the organ donation list but about how they fit into the organ donation scheme in their ability to receive the gift of an organ, should they be deemed clinically fit and should that match be found. <BR /> <BR />Carál Ní Chuilín is not in the House. She spoke of the need to place the matter on a statutory footing, as we have seen happen in England, Scotland and Wales. We have seen the difference that that has already made to the Welsh donor register and the effect that it is having. England and Scotland are still implementing and advancing that and are having the conversation on it. <BR /> <BR />Carál also raised a realistic challenge, which is the intense pressure that our health service is still working under because of COVID.”
“Paula Bradshaw finished her contribution with two questions. I have answered one, which was on the promotional activity that we have done and can do. The other question was this: why it has taken the Assembly so long to get here? That question has been asked by many campaigners, families and people who have been waiting to get to this point. We are here today, however. We are at the Bill's Second Stage. I look forward to engaging with the Health Committee and the other stakeholders, who need the additional step to get the legislation moved on. <BR /> <BR />I welcome Áine Murphy to the House. In her maiden speech, she asked, as does every Member for Fermanagh and South Tyrone, for equity for her constituents. I assure her that the legislation will apply equally to everybody across Northern Ireland.”
“It is about our next step and the conversations that can and will be had around many dinner tables about what this means and what people want to engage with.”
“<BR /> <BR />A lot of Members spoke about young Dáithí Mac Gabhann and his parents, Máirtín and Seph, and the work that they have done to promote organ donation over the past few years. I do not think that anyone in the House will not have seen the family's advertising campaign. Like Máirtín and Seph, I am the parent of a child with a congenital heart defect, and I assure the House that what Pat said, having spoken to the family, is true: Dáithí is stable now, but it is about what could progress and develop in the coming months and years. Knowing that there is the potential of a donor being there is reassuring, not only for a young child but for anybody at any stage in life. That is the hope that Robbie Butler spoke about, and that is the hope that this legislation brings.”
“<BR /> <BR />I will turn to other comments. Cara Hunter's contribution was reflective of the other SDLP contributions from Pat Catney, Mark Durkan and Dolores Kelly. Their contributions were very much about personal experience, what it meant for them as individuals and the party's connection to organ donation through the niece of their party manager, Catherine, and what that meant to her family. That is the crux of the conversation. <BR /> <BR />Robbie Butler referenced the work that had been done and how it started with our party colleague Jo-Anne Dobson. I spoke to Jo-Anne this morning about where we were going, and it was very emotional. Her interest in organ donation and its benefits comes not just from being a politician but as a mother and, eventually, a living donor.”
“<BR /> <BR />Voluntary and community partnership working allows the Department to reach a wide range of organisations, groups and target audiences — the grassroots of our society — including faith groups, our BAME population and younger and older audiences. No matter where the Bill goes, plans are in place for future promotional activity. I hope that the Bill gets to the next stage and gets legislative consent, but that drive will keep going. That is key to connecting and engaging with audiences, because the real-life stories of people, and seeing their faces, are very powerful. Today, we heard a number of Members try to convey the reality of not only what it means to be an organ donor but what it means for the family when a deceased relative gives the gift of life that organ donation brings. It is about how we take that to the next step.”
“<BR /> <BR />Between August 2020 and September 2021, work started to develop that promotional activity. We established a network of partners and stakeholders, and adopting that wider and more collaborative approach enabled us to amplify organ donation messaging. That has been key to enhancing promotion. Charities, trusts and councils have been key partners in that, and they have been extremely supportive and proactive. Network development has also augmented promotion in other sectors such as the voluntary and community sector, schools, further and higher education and our business community.”
“I thank the Member, and I get where he is coming from in the argument, but I think that that wait-and-see position does not get us to where we need to be. We have 115 people waiting on the organ donor register, and it is possible that around 10 to 15 people will die every year in Northern Ireland while waiting for an organ transplant. As I said in my opening comments, now is the right time to move into the sphere of having the conversation and, as I said to him earlier in the debate, dovetailing the conversation and promotion with legislation. Paula Bradshaw spoke about the delay of one year before the Bill takes effect. We must take that year to have that conversation and to move away from simply deemed consent and into promotion as well. That space is there to have those conversations.”
“When one looks at the Welsh numbers, one will see the evidence for how that slow conversation and movement to deemed consent increased the number of potential donors.”
“One of the things that the Bill has allowed us to do is to start to have the conversation on what organ donation means and how it can and should be promoted. I have reflected on Paul's comments, and on those of some of his DUP colleagues, about having the conversation and explaining things to people. That is where we were at in 2016. That was the counterproposal to Jo-Anne's Bill that came forward, and that was accepted and taken forward by the House, on what could be done to publicise more widely the conversation around organ donation. That, however, has not got us to the standard that we need to be at, which is to have 80% on the organ donor register. This is about taking the next step. That is what this legislation is about. It will bring us into line with Wales, Scotland and England.”
“The Deputy Chair of the Health Committee, Mrs Pam Cameron, opened by saying that she was speaking on her own behalf, but she went on to make clear that the Chamber is the place for debate. When I reflect on the conversations that I had with the deputy First Minister about progressing the Bill out of the Executive and getting it here for its First Stage and Second Stage, I remember that that was exactly that argument that we were making. If there are those who still want to have the conversation, get more information and have a wider debate, they should remember that this is the place where that should happen, as well as in the Committee Stage that we will move to now. It is about using this place now. <BR /> <BR />I acknowledged Peter Weir's contribution earlier when I was responding to Paul.”
“I thank the Committee Chair for the Committee's contribution and for the work that has been going on since the Bill was first mooted in this mandate. I thank him and the Speaker's Office for their close working on the issue that has enabled us to get the Bill to this stage. I look forward to further positive engagement as we move through Committee Stage and on to the other legislative stages. <BR /> <BR />When the Chair was speaking as the Sinn Féin health spokesman, he mentioned the delay and the opportunity that had been lost. To those who participated in the debate, I say this about where we are at now: let us take the opportunity that we have. We have got the Bill to its Second Stage. Let us make sure that it gets to Committee Stage and through the remainder of the legislative process while we have the opportunity.”
“I thank everyone who contributed to the debate on the Bill's Second Stage. It is unfortunate that the flow in the debate that we were having earlier was broken up by Question Time, but that is part of the business of the House. The debate in the Chamber was reflective of the conversations that have been had since legislation was first mooted back in 2016 by my then party colleague Jo-Anne Dobson, and those conversations that have been going on since. <BR /> <BR />It is clear from today's debate that there is agreement that, after considering the growing evidence base and the strong public support for the introduction of the legislation, this is, no doubt, the right time for the Northern Ireland Assembly to implement the Bill. I will take some time to respond to comments that Members made earlier.”
“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.”
“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.”
“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.”
“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. <BR /> <BR />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.”
“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. <BR /> <BR />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.”
“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. <BR /> <BR />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.”
“<BR /> <BR />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.”
“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. <BR /> <BR />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 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.”
“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 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.”
“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. <BR /> <BR />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.”
“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. <BR /> <BR />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.”
“<BR /> <BR />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. <BR /> <BR />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.”
“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.”
“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. <BR /> <BR />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.”
“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. <BR /> <BR />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.”
“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.”
“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. <BR /> <BR />I pay tribute to all those who have long campaigned for this move, including the family of young Dáithí Mac Gabhann.”
“We have seen that work starting in Westminster, and I hope to bring forward the consultation on the reform of public social care. I hope that the Member will partake in that and that his party will support it and its development in regard to how we fund it and what people in Northern Ireland will have to pay for their social care.”
“I thank the Member. On his last point, it was not, and it is not. <BR /> <BR />The Member is a member of the Health Committee and will be aware that I wrote to the Committee about the issue on 8 October 2020. I also supplied the Health Committee with a copy of the full report on 11 February. The Member will also be aware that the matter was out for public consultation for 14 weeks in 2017 and that only a small number of political parties responded to that consultation. <BR /> <BR />On the point about access and the availability of the scheme, individuals in the trusts will have informed families and dealt with them. Again, this is a small part of the greater reform that we need in adult social care in Northern Ireland.”
“Anyone who made an application for a continuing healthcare grant prior to February will still be assessed under the old scheme and will be eligible for payments should that be deemed necessary. If the Member has specific constituency issues that she wants to raise or write to me about, I will carefully consider those and pass them to the relevant officials in the Department for consideration.”
“I thank the Member for his question. He will be aware that, as I said, I have established a working group to do that. Representatives from the trusts, my Department and Age NI will be involved in preparing that guidance so that it is fit for purpose. Involving Age NI will make sure that service users' voices are heard so that, when we publish the guidance, there is representation from around the table, including providers and users. That will make sure that who can apply for it and who it is applicable to is easily understood.”
“I have asked for that new body to be tasked with developing proposals to improve terms and conditions and career prospects for social care staff. I am hopeful that that will assist the sector in recruiting, developing and retaining committed, skilled and well-motivated workers and provide a voice for the workforce, which often feels marginalised in our healthcare system. There is no avenue or representative forum for those care workers, and I hope that our social care fair work forum will provide that for them.”
“I thank the Member. There were 43 consultation responses in 2017, and I think that 19 of those were from individuals who had experience of the system. I do not want to conflate our domiciliary care service and what we are doing across the community in Northern Ireland with the specific point of continuing healthcare. Members will be aware of the continual challenges that we face in our domiciliary care sector, both in the independent and statutory sectors. That is why I have asked for the establishment of a social care fair work forum that would look to support and develop Northern Ireland's social care workforce. The Member is well aware of the value and importance that I put on that workforce, which is currently depleted, is under pressure and is struggling to manage the ever-increasing workload.”
“I thank the Member. The answer to the first question is 72. It would be premature for me to answer the second question before the public consultation and options are launched in regard to what we intend to ask the people of Northern Ireland in that public consultation. The Member is often rightly critical that many consultations are published with a predetermined decision already in place. The Member is asking me to take a position when the consultation has not been launched or decided on yet, but I will not be tempted to do that.”
“I am aware that the Member has a number of specific constituency issues on the question that she has asked. If she is content, I will come back to her in writing on the specifics, because I do not want to give an inaccurate answer on what is a live case for her at constituency level.”
“How the assessments are conducted and how they will be utilised will be part of the work of the stakeholder forum to make sure that any guidance that is issued is applicable to and practised on a regional basis rather than solely in one trust area.”
“I thank the Member for her question. Only one trust is utilising continuing healthcare because of the inconsistency across the trusts in their understanding of what the service was about, how it could be funded and how it could be accessed. That is why the NIPSO's report stated that failings in the health service should be documented and addressed, which is something that I welcomed. We are aware of the issues previously raised by the NIPSO in respect to the previous policy; those were well documented and further underscored the need for the 2017 consultation. That is part of the reason why only one trust was utilising the system.”
“I ask that anyone from any Executive party who is raising concerns about the funding of this policy or the greater reform of social care and domiciliary care supports my ask at the Executive table for that Barnett consequential to be earmarked and ring-fenced for health provision in Northern Ireland.”