Jo-Anne Dobson
Upper Bann · Ulster Unionist Party · Northern Ireland
“I thank Nichola Mallon for tabling this important question today. I understand that, through correspondence with my colleague Andy Allen, and he articulated this earlier, limited resources and challenges are being cited as the reason. Those are not acceptable reasons for young children to be denied access to a drugs trial.”
“I take no pleasure in speaking on the motion today, but I do so as the Ulster Unionist Party health spokesperson. I wish to focus my comments on, as the motion says, the "grave consequences" for the health of our people of Northern Ireland.”
“The GP crisis, as we know, threatens cover across Northern Ireland. That became abundantly clear given the number of Members who wanted to take part this afternoon. With hundreds of GPs considering resigning, that rescue package can no longer become a reality.”
“<BR /> <BR />I want to turn my comments to the present GP crisis and pay tribute to the work of GP representatives. A rescue plan is needed, but, sadly, one is unlikely to come forward any time soon. Shameful.”
“Minister, this is a desperate situation that has caused real anger in Portadown and has the potential to impact on the health of all patients of the health centre, creating a domino effect across practices. Portadown must be prevented from becoming Humpty Dumpty. What is your response to the anger of the patients in Portadown?”
“Minister, I, like Mr Anderson, have met many of these homeowners, farmers and businesses in upper Bann that have been affected, and livelihoods have been put at risk. Many farmers have been there for generations, and they do fear that it is Groundhog Day.”
The complete record
Every one of 711 lines we hold for Jo-Anne Dobson, in date order, each linked to its source. Free to read, in full, without an account. Page 8 of 15.
“They also provide an independent assessment of the public's views on this issue. <BR /> <BR />It stood out for me that, when asked, only 36% of the public knew that the organ donor register existed in the first place. If you ask any of the countless local transplant volunteers, many of them are waiting for an organ transplant themselves, are successful recipients of a transplant, are family members of those who have donated or been recipients of an organ, or are people who, in some way, have an emotional connection with organ donation. They will tell you that it is their sole life's purpose and drive to increase the number of organs available for transplantation. Members, these people deserve our respect, gratitude and praise.”
“They could then have confirmed and honoured those wishes by signing a document that is required by clinicians prior the loved ones' organs being donated. <BR /> <BR />The Bill does not propose to make any changes to the current system operated by clinicians, when an individual has already signed the organ donor register and has consented to donate their organs after death. I am also pleased by the three local public consultations into the issue of organ donation in Northern Ireland. The findings of the two PHA consultations into the issue of organ donation in Northern Ireland have been largely in line with the findings of my consultation for the Bill. I am also thankful that these consultations were conducted in parallel, as I believe that they too show that public support for a new opt-out system is rising.”
“However, with over 90% of the population consistently supporting organ donation and people in their mid-30s pledging in the register, there is a considerable difference between pledges to donate and support for donation. Indeed, as I mentioned earlier, 68% of our donations come from people who have never interacted with the organ donor register during their lifetime. That feeds into the argument that I laid out earlier on our currently high bedside rejection rates, standing as they are between 40% and 45%. This is frighteningly high and shows that families have perhaps not had the crucial conversation about donating that would have enabled them to better know what their loved ones' wishes were.”
“The facts are very different indeed. Donald Cairnduff, whose son Philip had a successful liver transplant in 2004, joined me in presenting to the Health Committee two weeks ago. I believe he explained it best when he used a footballing analogy. He asked the Committee to imagine, on the last day of the Premier League season, when all the games kick off at the same time, that every stadium hosting a home game is packed to capacity. Only 26 people among all those spectators in all those stadiums will become organ donors. Just 26; very long odds indeed. <BR /> <BR />That gives you a vivid idea of how rare it is for people to die in circumstances in which they can donate their organs.”
“The donation rate in the UK is 26 donors per million of our population. People often assume that, if they join the register, it automatically means that they will donate their organs.”
“<BR /> <BR />Under the current opt-in system, we have never broken through the glass ceiling of the mid-30%s of the public in Northern Ireland signing the organ donor register and consenting to donation after death. That is despite decades of promotion by the charities and the recent campaign by the Public Health Agency. From the perspective of someone who has been working alongside the charities for over 20 years, I know that that campaign was very much welcomed, given the heavy lifting that the charities have been doing and continue to do, day in and day out. <BR /> <BR />One of the little-known facts is that signing the register does not guarantee that a person's organs can or will be used after their death. That is because the manner of an individual's death often determines whether it is possible.”
“That was a direct result of the Welsh legislation that comes into force next month, two years after being passed by the Assembly there, which is the same timescale that I have proposed in the Bill. The changes to the register included the provision for people to be a donor, to not be a donor or to nominate two advocates to help affirm and make that decision for them after death. I also very much welcome the fact that the Health Minister warmly welcomed those changes. However, it is important to note that we would need legislation to come into place through the Assembly here to enable us to avail ourselves of the changes, which, I understand, our health service has rightly paid its portion towards. This Bill makes those changes.”
“<BR /> <BR />I understand that — the then Minister Poots confirmed it — local patients can register on the Republic of Ireland's transplant register, but that means that they cannot be on the UK register at the same time. I also understand that arrangements are in place that make it possible for organ retrieval teams from the Republic of Ireland to operate in Northern Ireland. It may be useful to seek clarity on that issue from the Department. <BR /> <BR />Last year, I was also grateful for the opportunity to meet the Welsh Health Minister, Mark Drakeford AM, in Cardiff. I also hosted Mark and Anne McTaggart MSP at a Long Gallery event just over a year ago. <BR /> <BR />Following my conversations with Sally at NHSBT, I was absolutely delighted when the new organ donor register was launched across the United Kingdom in July.”
“For me, visiting that room was quite a surreal experience, because I knew that that was where, with the call on 4 February 2009, the process started when an organ had been found for Mark. It was an emotional visit for me, and I was delighted to spend time with staff who operate that vital service 24 hours a day, 365 days a year. I was also delighted to meet Sally Johnson, NHSBT's director of organ donation and transplantation, and her team who maintain the organ donor register database. We discussed the future of the register and the likely impact of the Human Transplantation (Wales) Bill being passed at the Welsh Assembly.”
“Mark's kidney came from a donor in England and was held up by snow. That meant that, even though we had reached the hospital, his kidney had not. The team in NHSBT would have allocated the kidney to the next match on the list if the weather conditions had not improved. Thankfully, conditions improved and the organ arrived in Belfast healthy and within the timescale window for transplant. <BR /> <BR />Those are issues that few tend to consider when thinking about organ donation, albeit that they are important issues. That office in Bristol is where they match an organ to a patient and start the process by which patients receive the call, which I spoke about earlier.”
“The arrangements for transporting patients from Northern Ireland to hospitals across England are complex. <BR /> <BR />Last year, I had the opportunity to visit the NHS Blood and Transplant organ donation and transplantation directorate in Bristol. It is miraculous to see that all transplants in the UK are coordinated through one tiny room in the middle of an industrial estate in Bristol. We are very fortunate to be part of the wider UK network, which allows patients to benefit from organs that are donated in the rest of the UK and vice versa.”
“<BR /> <BR />Recent figures from the British Heart Foundation reveal that there are 10 people in Northern Ireland on the waiting list for a heart transplant and one person waiting for a heart and lung transplant. According to the latest NHS transplant statistics — I mentioned this earlier — no one from Northern Ireland received a heart transplant last year. Can you imagine the stress and worry of those 10 patients and their families, often making multiple journeys to hospitals far away from home? They are arduous journeys for seriously ill patients. In some cases — I know this from experience — it is with hopes built up, only to be dashed when, for any number of reasons, a transplant cannot take place. That is sadly more common than it may seem.”
“Liver transplants for adults are conducted in King's College Hospital, London, and for children in Birmingham Children's Hospital. Heart and lung transplants take place at Freeman Hospital in Newcastle. Imagine the long and difficult trips back and forward to those hospitals and the anguish and pain while they live with their condition while waiting on an organ. <BR /> <BR />The lack of available organs means that patients must endure a greater number of trips from home to hospitals across the country, at considerable strain to them and their families, and considerable cost to the health service. Increasing the availability of organs increases life chances and decreases stress, as well as reducing financial costs. I believe that the Bill will achieve that.”
“Each kidney transplant costs roughly £17,000 per patient. Post-transplant, the yearly cost of immunosuppressive medication is roughly £5,000 per patient, meaning that, for each kidney patient who receives a transplant, the NHS estimates that it receives a saving of £25,800 in the second and subsequent years. That obviously does not take into account the benefits of people returning to a normal life and the impact on their families, community and wider society. <BR /> <BR />It is very clear that the lack of available organs is placing major stresses and strains on local patients' families. One of the major reasons for that is that all transplants for local patients, with the exception of kidney transplants, are conducted in hospitals in other regions of the United Kingdom.”
“However, the paper's conclusion on the cost benefit to the health service of increasing transplant numbers is startling; it could be as much as £7·4 million net benefit to the Northern Ireland economy. <BR /> <BR />To give just one example, focusing on kidney patients for a moment, the average cost of keeping a patient alive through renal dialysis is £30,800 per patient per year. It is roughly £17,500 per patient per year for a patient on peritoneal dialysis and £35,000 per patient per year for a patient on hospital haemodialysis. <BR /> <BR />In response to an oral question that I asked in the Chamber, the then Health Minister, Mr Poots, confirmed that, in 2013, 932 local patients underwent dialysis. That meant a total cost of over £29 million to the health budget, based on NHS cost estimates, in one year alone.”
“The paper, which is entitled 'Organ Donation Bill: Estimated Financial Costs and Benefits' is available in the Assembly Library. I should also say that I look forward to working with the Department as we look in greater detail to the cost figures. <BR /> <BR />Assembly research estimated that implementation costs for the Bill would be between £2 million and £5 million over a 10-year period. Based on the assumption that implementation would be two years after the passage of the Bill, it reached the conclusion that the net discounted financial benefits from achieving one additional transplant a year over a 10-year period by organ type are as follows: £4·6 million for kidney; £6·3 million for liver; £2·3 million for heart; and £1·4 million for lung. More up-to-date figures from the Department will help to provide greater clarity.”
“As I said, the equivalent figure here was 56% in 2013 and at present, from the 2015 figures, we have a figure of 61%, according to the Public Health Agency. That shows clear evidence of public support from the majority of people for changing the law and that they believe that the move to a soft opt-out system will result in more lives being saved. <BR /> <BR />I would like now to focus on the finances. No one can ever put a price on what it is like for a transplant recipient to receive a new life; as a family, we know this in our home. However, there will inevitably be cost implications with this Bill. The Assembly research service has produced a research paper that looked into the implementation costs of the legislation.”
“Few people can have failed to see the leaflets, posters and billboards, and that is precisely what clause 1 of the Bill envisages when it comes to public education. A continued programme such as that must be central to the future of organ donation. <BR /> <BR />It is also noteworthy that, in responses to the PHA's 2015 survey, 79% of the public agreed with the statement: "The soft OPT-OUT system will result in more lives being saved". The equivalent figure in 2013 was lower, at 74%, and I pay tribute to all of those involved in the charities associated with the continued promotion that is having an impact on the public's view on this issue. <BR /> <BR />When the Welsh Government decided to go down the route of a soft opt-out system, their surveys concluded that 49% of the public in Wales supported changing the law.”
“More recently, a PHA survey with figures from February this year again highlighted public attitudes to organ donation. The Public Health Agency survey highlighted 56% support for a move to a soft opt-out system in June 2013. That grew in the PHA's most recent survey to 61% of the public supporting a move to a soft opt-out system. Again, in 2013, 18% of the 1,012 respondents to the Public Health Agency's consultation were opposed to a change in the law geared towards soft opt-out. In 2015, that figure dropped to 10%, signalling a clear change in attitude, with the percentage of those opposed almost halved. That reduction could, possibly, be a result of the continued hard work of local charities, as well as the PHA's important 'Speak up and save a life' campaign, with its two powerful television adverts and associated campaigns.”
“It showed that 82% of respondents supported a change in the law and a move to a soft opt-out system. Also, 61% supported the attainment of the key role of the family and 86% supported protecting the rights of those who lack capacity in the legislation. Those views have been well reflected in the Bill. <BR /> <BR />I want, again, to record my thanks to each and every person and organisation who took the time to respond. I also want to record my grateful thanks to the local charities of the Transplant Forum as well as the British Medical Association, the British Heart Foundation, Opt for Life and others for their support in promoting the consultation. <BR /> <BR />In addition to my own consultation, the Public Health Agency conducted a consultation on public attitudes, also in June 2013.”
“At that time, I wrote to each Member and provided them with a copy of the consultation document. In my letter, I reiterated that my door has always been open. I thank those Members who have taken the opportunity to meet me to discuss the Bill and to respond to the consultation. <BR /> <BR />The public consultation ran for 16 weeks and received 1,366 responses. Those responses were made both online and offline, and came from a mix of the general public, charities, councils, churches, the health and social care sector, political parties and others. A summary report was produced in October of that year, giving an overview of the 10 questions and the responses to them. That report is available in the Library and details responses that were positive, as well as concerns raised in answer to each question.”
“However, we have exceptional specialist nurses in organ donation, who are trained to deal with these situations and advise families at the time. <BR /> <BR />I support the crucial role that family plays in the process, not least because death does not just affect the person who has died but the whole family, who have a role to play. The consultation identified a willingness to retain the crucial role of the family in providing consent for organ donation to proceed, and that is clearly in place at present for express, as it is in the Bill for deemed, consent. <BR /> <BR />On 4 June 2013 I launched my public consultation for this Bill. I am also grateful to the Public Health Agency for the findings of its two consultations on public attitudes towards organ donation, conducted initially in the same year.”
“I stand to be corrected, but I believe that it is roughly 24 hours for a kidney, which is one of the most robust organs under the circumstances. That is why I feel that it is not advisable for people to make their wishes known in a will, because by the time it is actioned, the window may well be closed and transplantation will not be able to take place. <BR /> <BR />Concerns were also raised to the Committee about conflict between family members over providing consent for donation, something that can arise at present, albeit rarely. This is more likely when a family has not had that important conversation, and that situation is one the Bill seeks to resolve through greater public awareness. Initially, having the conversation between family members is the best way to avoid the situation.”
“<BR /> <BR />The advocate would also have a role where someone has a specific wish or instruction that they wanted carried out after death. They could appoint someone to make that decision for them. If the person were to die in circumstances where donation is possible, their advocates would be asked if organs should be donated. Equally, if the advocates nominated have predeceased the person or cannot be contacted at the time, a family member or relation could be contacted and asked to provide consent. This is similar to the current situation when someone has interacted with the register during their lifetime. <BR /> <BR />We should also remember that there is a window of time after death during which clinicians may use an organ for transplantation.”
“I believe that we can learn from those experiences. <BR /> <BR />I will now address some of the concerns raised during the recent Committee meeting. I commend the idea of people being able to nominate advocates when they sign up to the organ donor register. Concerns were raised about family members who may have an opposing view on organ donation. This is where advocates play such an important role. Advocates provide people with the opportunity to nominate someone to make the decision if they do not want to make it themselves at the time. The Public Health Agency's (PHA) consultation identified what it termed the "ick" factor amongst some respondents who simply did not want to make a decision or consider the issue.”
“No, I want to make my points. <BR /> <BR />It has been said many times in the Chamber that education is critical as we look to the future of organ donation in Northern Ireland. We should be focusing now on the needs of local families in five, 10, 15 or even 20 years' time. <BR /> <BR />There are certainly many lessons that I believe we can and should learn from the experiences of other countries. I come back to Belgium for a moment. It has a fantastic programme in its schools, where, from an early age, the power of saving lives through donation is introduced into the curriculum. I wrote some time ago to the Education Minister calling for the introduction of a similar system in our schools. In Belgium, they have changed the public view of organ donation from being an exception to being the norm.”
“However, crucially, and I have always said this, consent is subject to family affirmation prior to donation taking place. This is included in clause 4. That is why having the conversation amongst family members and loved ones is so important, and I have always said that a duty to promote, as contained in clause 1, would be central to increasing public awareness.”
“If someone, for whatever reason, is opposed organ donation, they will, for the first time, be able to engage with the register to opt off and their family will not be approached at the time of their death. <BR /> <BR />The second form of consent is "deemed consent", where there was no interaction between the individual and the organ donor register during their lifetime. Following death, and in the knowledge that they have not engaged with the organ donor register during their lifetime, it will be deemed that they have provided the necessary consent for transplantation to proceed.”
“The second, third and fourth clauses set out the requirement for there to be appropriate consent before a transplant can be lawfully conducted and cover, in detail, the two types of consent. <BR /> <BR />"Express consent" is where the individual can provide their own consent for a live donation; has engaged with the organ donor register to make their wishes known; appoints two advocates; or has placed their wishes in a will. That is the current procedure and, for donations after death, is subject to a procedure conducted by clinicians, where the family is required to provide express written consent to confirm the individual's wishes prior to donation proceeding. The Bill makes no change whatsoever to that current practice.”
“I thank the Member for his intervention. That is precisely why clause 1 sets out that we need an education programme as well. If he reads the Hansard report of my speech, he will find that I referred to the fact that opt-out should go in line with the education programme as well, which is crucial for everyone to make their wishes known. <BR /> <BR />I take a moment to break down the main aspects of the Bill's content for Members. It is fair to say that, of the 22 clauses, the most important are towards the beginning of the Bill. The first clause places a duty on the Health Minister to promote human transplantation and to conduct a yearly campaign to inform the public how the new opt-out system would operate in practice, including the role of the family in affirming consent.”
“<BR /> <BR />In opt-out societies, however, the rejection rate tends to be much lower, at between 2% and 15%. The bedside rejection rate in Belgium, incidentally, is closer to 2%. That fits in very well with the PHA's findings that 96% of local families agree to donation, if they know their loved one's wishes. So, the figures suggest that, in opt-out countries, such conversations are taking place and, when it comes to asking the family whether they know and can confirm the wishes of their loved ones, they will be in a better place to understand and articulate those wishes.”
“Indeed, a greater proportion of our transplants, currently 68%, come from people who have had no interaction at all with the organ donor register during their lifetime than from those who have. <BR /> <BR />Another aspect of our current system is that, even though we are one of the most giving people, with wide support in society for organ donation, we still have a relatively high bedside refusal rate, roughly 40% to 45%. That is another aspect where figures differ between opt-in and opt-out countries across Europe. Our high rate suggests that, prior to death, people often have not had that all-important conversation with their loved ones about their wishes. In other opt-in countries in Europe, the average refusal rate is roughly between 40% and 60%. As I said, in Northern Ireland ,we are around 40% to 45%.”
“That change generated a positive change in the public's perception of organ donation that resulted in roughly 2% of their 11 million population saying that they did not wish to donate organs after death. <BR /> <BR />I apologise to my fellow Committee members if some of my contribution overlaps with my presentation to the Committee two Wednesdays ago, but these are important issues and central to the reasons behind the Bill. <BR /> <BR />One thing that I learnt over the past few years in bringing forward the Bill is that our local organ donation system is complex and confusing.”
“We should be equally proud that our live donor programme at the City Hospital under Dr Aisling Courtney is the envy of clinicians across the world. I visited it on a number of occasions and pay tribute to everyone involved in that programme and wish it continued success. <BR /> <BR />However, Luc Colenbie, head of Belgium's successful transplant strategy, told me in Brussels at the beginning of the year that their experience was that live donor programmes will eventually reach a plateau. Belgium has a positive culture towards organ donation, in part because policymakers made the issue a national priority. When they switched to an opt-out system in 1986, there was an 86% rise in the number of kidneys retrieved for life-saving transplants.”
“They are also required to take a permanent course of immunosuppressive drugs to suppress the immune system, meaning that kidney transplant patients are prone to infection. <BR /> <BR />I was not alone in the House or among the organ donation community in being absolutely delighted to hear that the fantastic team at the City Hospital undertook five kidney transplants in one day in September. Whilst a one-off, it shows that we have the expertise and capacity for kidney transplants. However, I am conscious that that was a fantastic one-off event. We all want to see more people being given that chance of a new life and the hope that they need to go on. I firmly believe that a soft opt-out system will deliver that hope. I have nothing but admiration for the amazing staff in the renal units.”
“For others, it is all about giving them hope. I am thinking of one family that I know where 12 members have a genetic renal condition. It is a family that never knows how long their children, or any family member, will have until their kidneys fail. <BR /> <BR />Imagine what providing hope to that family would mean to them when faced with a possible future on dialysis for any family member — hope that a new life will come. I firmly believe that, working together, we can deliver that hope to them, their family members and other families in the same position across Northern Ireland. <BR /> <BR />Let us also remember that one kidney transplant does not last a lifetime; kidney patients often require two or three transplants during their life.”
“I welcome my party's continued support for the introduction of a soft opt-out system at a policy and personal level, and I thank all political parties that responded to the consultation. <BR /> <BR />Whilst discussing the political stances towards organ donation, I am conscious that this matter should — and, in my opinion, will — remain well above party politics. We have more than enough policy issues that divide us in the Chamber, but on this issue, surely, as the Second Stage goes forward, we can unite and work together to introduce something that the public, our constituents, supports. <BR /> <BR />I like nothing more than taking time to visit renal units and chat to patients undergoing dialysis. For some, a transplant is not an option, and they are resigned to the fact that they will end their days on dialysis.”
“Equally, the DUP's 2010 Westminster manifesto included the line:”
“I welcome the support of Sinn Féin and the SDLP for the issue, and I know that Mark Durkan MP has been a regular attender and supporter at the all-party parliamentary group for transplantation at Westminster.”
“I was delighted to receive her support for the Bill progressing today, and she joins a long list, including the majority of the public, in supporting the move to a soft opt-out system for Northern Ireland. <BR /> <BR />Looking through political party websites and manifestos is not something that I often find the time to do. However, they make for interesting reading. I have been delighted to see reference in manifestos, on party websites and in press releases to organ donation policies and, specifically, to support for the soft opt-out system. To give a flavour, I welcome its inclusion in the Green Party's policies as well as in the Alliance Party's 2012 manifesto.”
“That is a key point. I welcome the support for the Bill from the First Minister and the deputy First Minister, from Members across the Chamber, from councils and from MPs from all the local parties at Westminster. I would also like to commend the support that I have received from the volunteers and officers of the local and national charities, who work so hard to promote organ donation and for whom the donor families are the real heroes. <BR /> <BR />Each year, Dame Mary Peters, who until last year was Lord Lieutenant of Belfast, presents certificates to families of those who have donated life-saving organs following the death of a loved one. That is a fitting tribute to our amazing donor families in Northern Ireland by Northern Ireland's own ambassador, who is a lady in every sense of the word.”
“<BR /> <BR />I am certainly open to improvements and changes that will achieve the right Bill for Northern Ireland. I very much welcome the support of the First Minister and recognise that he has given a clear commitment to me in the House to support the Bill. His views on the soft opt-out system were clear when, in response to Joe Brolly and Shane Finnegan when they asked him about the movement to change the law, he said:”
“<BR /> <BR />I am, however, a single MLA working alongside the Bill Office to bring forward a Bill of this extent and importance. I obviously do not have the Health Minister's army of staff and resources or, indeed, the equal armies of staff of the First Minister or deputy First Minister to bring forward this Bill. That is why I want to say at the outset that I am happy to work alongside any Member on any aspect of the Bill and would welcome input, help and assistance in bringing it further through the Assembly processes. I am also looking forward to a close working relationship with the Department of Health, and the Minister will be aware that, two weeks ago, I had a preliminary meeting with one of his directors. I am hopeful that this will provide help and assistance in the weeks and months ahead.”
“Members, we often get much criticism in this Building for failing to bring forward legislation that brings a real benefit to the lives of people right across Northern Ireland. Few issues could be more important than introducing legislation in the Chamber that increases life chances and gives all our people — our constituents — greater hope for a new life after an organ transplant. Medicine has moved on considerably since the organ donor register was first introduced some decades ago. I believe that, as a devolved region of the United Kingdom with the right to frame our own legislation, we should follow the lead of the Welsh Government, through their Health Minister, Mark Drakeford AM, and my colleague Anne McTaggart MSP in Scotland, and work together to achieve the right Bill for Northern Ireland.”
“Last year, 17 people from Northern Ireland died while they were waiting on that telephone call to let them know that a match organ had become available. Members, for them, that call will never come. It is for them and for future generations that we need to adopt a different approach; to lift our eyes from the present to a future where organ donation is not viewed an exception but rather the norm.”
“William waited for over 17 years until he received that call and had his transplant last year; but, on that day, when he presented to the Health Committee and the security guard at the door of the Senate Chamber asked him to turn off his mobile phone before he entered the room to present to the Committee, William fixed him with a stare and said, "My phone is never switched off. I never ever know when that call might come". I think that that highlights starkly for us the human reality behind the statistics and figures.”
“None of us know when and if we may need an organ at some stage to save our lives. Anyone could be waiting on that life-saving telephone call; and those who have been in that position — and I know what it feels like — are best placed to describe it; but they are the lucky ones because, for them, that call came. For others, it is too late, that time has passed and that call will never ever come. <BR /> <BR />I well remember presenting to the Health Committee in 2013, and I was joined by Mr William Johnston, who is now chairman of the Northern Ireland Kidney Patients' Association.”
“<BR /> <BR />It is also equally important to point out that the figures show us that there were no heart transplants conducted in Northern Ireland for Northern Ireland patients last year. That is a point that I know is being highlighted by the British Heart Foundation. That is despite five local patients receiving a heart transplant in each of the two previous years and four in 2011-12. Focusing on the transplant waiting list, that is 162 local people and their families who are waiting, watching and wondering when that all-important call will come to let them know that a match organ has been found. <BR /> <BR />Statistics should never be used to mask or hide the human reality felt by patients. Behind each and every one of those patients is an individual story of pain and anguish.”
“In a sense, they are the luckier ones. There is no dialysis for people who need a heart, liver, lung or other organ. The only option for them is to receive an organ or to die. <BR /> <BR />Figures from National Health Service Blood and Transplant (NHSBT) provided to us by Assembly Research — and I pay tribute to it for the pack it has provided us with for this debate — show that, at the end of September this year, 162 local people were on the transplant waiting list. That is made up of 117 patients waiting for a kidney, five for a kidney and pancreas, seven for a heart, 13 for lungs, one for a heart and lung and 19 for a liver. Indeed, the figures for September this year see the highest number of patients waiting on a transplant for organs other than a kidney in the last four years where we have available figures.”
“<BR /> <BR />The plain truth about organ donation is that the number of available organs does not meet the demand; and that, in a nutshell, is the reason why a change in legislation is required. I fully appreciate that this will be an emotional and, for many, a sensitive debate. I encourage Members to keep the recipients and donors at the forefront of their thoughts when making their contributions today. <BR /> <BR />I will spend a little time laying out the current stark reality facing local people when it comes to organ transplantation. The first and perhaps most striking thing is that 17 people from Northern Ireland died last year while waiting on a life-saving transplant. The local average is 15 people every year. In 2013, 932 local people underwent kidney dialysis, which is a three-times-a-week life sentence.”