Oireachtas Joint and Select Committees
Thursday, 18 April 2013
Joint Oireachtas Committee on Health and Children
Organ Donation: Discussion
I welcome everybody to the meeting, in which we will discuss organ donation. It is the first of two meetings on the issue. Briefing papers from the Department of Health and a research paper from the Oireachtas Library and Research Service have been circulated to members.
I wish to express my gratitude to the service for its excellent work.
This morning we will hear personal and advocacy perspectives on organ donation, particularly from those with a personal experience of donation and advocacy groups representing those affected by organ donation. I welcome each witness here today and apologise for the earlier hold up; we had some private business to attend to. I thank the witnesses for coming this morning and making time to join our discussion on the first of two meetings.
Before we commence, I asked members and those in the gallery to ensure their mobile phones are completely turned off as they interfere with the broadcasting equipment, even when switched to silent, which is unfair to the staff and affects the transmission of our proceedings.
By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of the evidence they give to the committee. If they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against a person or persons or an entity by name or in such a way as to make him, her or it identifiable. The submissions made to the committee and opening statements will be published on its website after the meeting. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable.
We will have the presentations by the advocacy groups first followed by questions and answers. I will take questions and answers in groups of three. I welcome Ms Phyllis Cunningham, senior transplant co-ordinator from the National Organ Procurement Service and invite her to make her opening remarks.
Ms Phyllis Cunningham:
I thank the committee for giving me the opportunity to give my viewpoint as someone who for the 26 years has been deeply involved in all aspects of organ donation and transplantation. My name is Phyllis Cunningham, I am a qualified nurse and I started my career in Jervis St. Hospital. My current role is senior transplant co-ordinator and I manage the National Organ Procurement Service, currently based in Beaumont Hospital. I manage a team of five transplant co-ordinators and liaise with 40 intensive care units around Ireland. I also work closely with transplant units in hospitals in Britain and Northern Ireland. I set up the organ transplant service in Beaumont Hospital in 1986 and have continued to work in the area.
Every day I witness at first hand the life saving and life changing outcome of organ transplantation. I have experienced the development of all the transplant services in Ireland and see the increasing demand for more organs for transplant. In 1999, for instance, there was an average of 100 patients on the waiting list for renal transplant and 145 transplants took place. Today, there are 600 people on the waiting list and at best we expect to achieve 180 renal transplants by the end of the year.
I am humbled by the wonderful families I meet who make the very unselfish and thoughtful decision to donate their loved ones organs at a very difficult and traumatic time. I have experienced the comfort and consolation families have derived from organ donation and I passionately feel that every family should be offered the opportunity to consider donation in circumstances where it would be possible.
I would like to share with the committee my most recent experience. I was involved in a case with two parents whose six year old boy died suddenly in extraordinarily tragic circumstances. For confidentiality, medical and legal reasons, I cannot discuss the circumstances. I would like to highlight, however, that these parents, who have many questions that will require open and honest answers regarding the lead up to their son's tragic death, at a very difficult time spontaneously donated their son's organs for transplantation and the recipient was another child in a life saving situation. This wholly unselfish gesture of the donor family ensured that the recipient family would not have to go through what they had just experienced: the loss of their child.
I welcome legislation to support an increase in organ donation but I have concerns about the term "presumed consent". I feel this term has negative connotations as it loses sight of the fact that the donor family is central to the whole process and so the ultimate choice must rest with the family. In practice, it should be presumed that all families would like to be asked about organ donation and in keeping with their loved ones wishes they will make the right decision for them. The ultimate decision will be with the family of the deceased. I believe the best approach would be to incorporate into the legislation an opt-out system which would involve the family.
Most importantly, in conjunction with any legislation there needs to be ongoing public awareness and education about the need for and benefits of organ transplantation. Knowing the wishes of your loved one regarding organ donation is easier for a family than having to make a decision on their behalf at a very difficult and traumatic time.
Legislation and education alone are not enough. More resources are required to deal with the potential increase in the service and a robust infrastructure must be put in place to ensure discussion with the families about organ donation is done in the right way at the right time by the right person.
Organ donation truly is the most precious gift, given unconditionally and wholeheartedly with such goodwill to the organ recipient. Organ donation not only benefits transplantation but it is a key element to support families in their grieving process. It is very important that we can maintain a positive and sensitive approach at a most traumatic time for a grieving family.
I will share an example of the gratitude felt by recipients by reading an excerpt from a letter written by a 16 year old to his donor family on the anniversary of his transplant. He said:
I know this time of year is very hard for you but I hope it helps to know that I think of you every day and how grateful I am for the wonderful gift you gave me. Everything I do, everything I achieve, I do it for you. Most especially, I bring your loved one with me and I will try never to let you down. Once again, thank you for changing my life, from a kidney recipient.In reply, the family wrote back, "Our lives will never be the same because of the loss of our loved one but your letter is beautiful remembrance. Take care and best wishes for the future".
Mr. Joe Brolly:
I thank the committee and the Chairman for inviting us here today. I am a part-timer but the celebrity surrounding this failed transplant has captured people's imaginations.
We have worked closely with the main stakeholders, North and South, and our question was "How can we help?". It quickly became clear to us that the way to help was to work towards the putting in place in the South of proper infrastructure for organ donation and to move towards the system operated by the leading European donor rate countries.
It has been a huge adventure for me and I see beside me, and I cannot say how ecstatic I am to see her, Ms Noreen O'Halloran, whom I met at an event for the Mercy Hospital in Cork earlier this year. At that stage, she was so ill I thought things might not work out for her. I sent her a text about six weeks ago to say I was thinking of her and she texted back to say not to worry because she was on her way to the hospital for a transplant. Five weeks ago she received a kidney from the family of a deceased donor in very difficult circumstances, as they always are. The transformation is extraordinary. This is the amazing Noreen O'Halloran today, and she is a full supporter of the Government's proposed legislation for soft opt-out. She has her own website for patients, which she will talk about. The fact she is here today is a symbol that there is nothing to fear from this because family consent is at the heart of the proposal.
If members would be good enough to look at the document that has been circulated, from the makelifeyourlegacy.com website, "Opt for Life!", we hope that a one-stop shop can be worked out with people like Professor Jim Egan and Dave Hickey, and with Phyllis Cunningham, who is the doyenne, the mother of organ donation in this society, who works tirelessly often with little help and few resources, along with her team in Beaumont Hospital. The point of our involvement is to ensure the organ donation system is fit for purpose. There is no reason we should be lagging behind the main European countries.
This is very easily solved and it makes perfect economic sense.
Briefly, I want to tell the committee about the position in Northern Ireland. One of the documents that I have circulated to the committee is from the Department of Health and Social Services with whom we have been working closely in the North. Over five years, in the North, by putting in place the infrastructure that Professor Egan recommended in his paper which is one of the appendices in the document the committee has, we have achieved an 81% increase. That is coming from a very low base in Northern Ireland five years ago of approximately 13 or 14 donors per million of the population - we are now at 22 per million.
One of the appendices in the document is drafted by Dr. Paul Glover, who is the national director in the North for organ donation and transplantation. The five main parties, all of the patient associations in the North and all of the main stake holders are unanimously in favour of a move to soft opt-out for the following reason. Even with a good infrastructure, we have reached a ceiling in the North and we realise now that the way to move to the next level is to move to soft opt-out.
Briefly, I will explain the proposal. I appreciate that most of the members are in tune with what is going on. The reason I started this is that after I came out of the transplant and I went on the radio talking about how people must become donors, I received a call from one of the McNicholl girls, a mountainy woman from Dungiven which is close to me. She said I was wasting my time and that we should do what is done in Belgium, where everybody is a donor unless they do not want to be and one's family still has the final say. She told me that everybody is a donor in Belgium and it is merely a normal part of the dying process.
This proposal, what the Minister is proposing, will make organ donation the norm in society. If one thinks of it logically for a moment, the question at present is, "Should I decide to become a donor?" Apathy is a big problem in that regard - we only have 27% or 28% of the people involved. Under the new system, the question will be, "Is there a reason that I should not be a donor?" That will more properly accord with the overwhelming view in society that organ donation is good. Who does not want to save seven lives after he or she is dead?
I do not want to go through all the nitty-gritty, but the committee will see the basics of the proposals and all the statistics set out. A phrase is often used about this - I have been using social media and I am aware that Ms O'Halloran used it too. The question that keeps coming back from people is, "Why have we not done this already? It is a no-brainer."
I commend the proposal to the committee. The committee will spend time reading the document. We have a limited amount of time here and I will pass over to my good friend.
Mr. Shane Finnegan:
I thank Mr. Brolly. I also thank and congratulate the Chairman for acting so promptly and with such an open mind on this issue when Mr. Brolly and I first met him a couple of months ago. I also commend the Chairman and the committee for hosting these hearings, today and next weeks.
I struggled when I first sat down to consider what I could add to this process. I am an organ donation campaigner with all the facts, but the many other eminent representatives one will see here, today and on 25 April, can relay that information to the committee. Then I thought there is something that I can bring to this table that some others cannot, that is, what this process is like through the eyes of the patient. I will tell the committee what this debate and the issue of organ donation looks like through my eyes.
First and foremost, I see a wildly fluctuating system where in any given year someone like me may have a slim chance of a transplant. In another year, such as 2010 when organ donation dropped by 28%, I would have no chance. I see the top ten European countries for organ donation have adopted the opt-out system and being representative of patients dependent on the Irish health service, I validly ask the question, "Is that a coincidence?"
I also see in 2012 that Ireland, a giving country full of compassionate people, has an organ donation rate of 20 per million population compared to 35 per million in countries such as Spain and Croatia. As a proud Irish person, I see this outlook on organ donation as not being reflective of the Irish people. Contrary to all the good work of the talented professionals who work in this field, I see that this is the result of a confined and restricted system.
I can say with some conviction that Irish people are compassionate as regards organ donation because Mr. Brolly and myself had independent research conducted by Amárach on the soft opt-out system. The question we asked the Irish public was, "Would you support a system of organ donation where all of us were donors unless we have opted out during our lifetime, with the next of kin always having the final say?" In a survey of over 1,000 persons and without any education on this issue, 71% said "Yes", 11% were indifferent and 18% said "No". The committee is the first to hear this research. Mr. Brolly and I will be issuing this to the media later today. With a good education process that would accompany legislative change, Mr. Brolly and I firmly believe these figures on public support would rise. As a patient, I see us pushing an open door.
Finally, I will give one last statistic which for me, as a long-term renal patient, is the most concerning of all. In 2000, there were only 150 patients awaiting kidney transplants. Today, that figure is closer to 650, a 413% rise. People are living longer. Type 2 diabetes sufferers are on the increase and the current waiting list will not dissipate any time soon unless we make this very subtle change.
With dialysis patients each costing the health service €70,000 a year, there are long-term savings to be made by changing. One cannot put a cost on a human life. That is for others. Fr. Alex Reid once stated that if by his actions he could save one life, then it will have been worth it. How often do the committee members, as legislators, have the opportunity to go back to their constituents and say they are actively saving multiple lives? I do not think anyone before the committee today, or on 25 April, would question that.
After 20 years knocking around renal units, transport wards, dialysis units and operating theatres, I have not seen or heard of a system that can impart change and make the difference the way this opt-out system could. Call me naive. I see no plan B.
I would ask the committee not to have somebody like me sitting in front of it in ten years' time when the situation is undoubtedly worse. They should give us hope, show leadership of which I see an abundance in this room and start helping us drive the change.
I welcome Ms Christine Quinn from Castlebar, County Mayo, and thank her for attending. I am aware that the Taoiseach has been in contact with her as well because he asked us this morning to send his best wishes to her.
Ms Christine Quinn:
I am here today to speak to the committee thanks to the selfless generosity of a donor family.
Briefly, I will tell the committee my story, which began in January 2007 when I got sick. Up until then, I was in perfect health. Later that year I was diagnosed with a rare and incurable lung condition. Over the next few years my condition deteriorated until, in August 2011, matters reached a critical stage. I could no longer work and I was hospitalised. I was dependent on oxygen to keep me breathing. My life was very grim and there was no end in sight.
Professor Jim Egan, with his wonderful team at the Mater Misericordiae University Hospital, was my life-saver. They cared for me and never let me give up hope. With their help and support, and tremendous kindness, I was given the chance to have a second shot at life. Professor Egan agreed, at this stage, that a transplant was my only means of survival. I was ecstatic, but at the same time I was very nervous wondering would I survive. I was one of the very lucky ones. I was put on that transplant list.
At this stage, I had what everyone else would say was everything but, in reality, I had nothing. I had a good job. I had plenty of money. I had my own house, plenty of friends and my own car, but that was nothing because I had not got my health. None of it was any good to me.
I could barely walk and I could not breathe. I depended on my family and friends to do absolutely everything for me.
Oxygen kept me alive and in September 2011, just two weeks after being put on the list, I got the call that saved my life. I was given the ultimate gift of a lung transplant and thankfully I have never looked back. I am now back at work and am able to do the things in life I love and best of all I can go for a walk and breathe fresh air, something I could not do. I can now do the simple things in life that we all take so much for granted.
People should not be fooled - it was by no means an easy journey and there were days when I wondered if it was worth it all. As members look at me today they see living proof that organ transplantation works. I will be forever grateful to the wonderful family that allowed their loved one to be my donor. There are huge waiting lists for recipients and a great shortage of donors. Advances in medical science result in more successes in transplantation, which should encourage more people to be organ donors.
I thank Ms Quinn for coming this morning and sharing her story.
Our next group of speakers Ms Noreen O'Halloran, Mr. Michael Kiely and Ms Annette Betson are also sharing time. I ask Ms O'Halloran to lead off.
Ms Noreen O'Halloran:
I thank the Chairman and members of the committee for the invitation to attend this morning's meeting, which affords us an opportunity to set out our proposals, which we feel would improve the current organ donation system in Ireland. Mr. Michael Kiely and Ms Annette Betson and I are very pleased to be here and have listened with great interest to the many invited guests. We also hope our personal experience of organ failure will assist the members of the committee and give them a greater understanding of how organ failure affects the lives of patients and their families.
I will give a brief introduction. Mr. Kiely suffers from end-stage kidney failure and after being on hospital haemodialysis, his sister, Ms Betson, decided to become a living donor to him. As a result in January 2012, Ms Betson successfully donated one of her kidneys to Mr. Kiely. I was diagnosed with polycystic kidney disease at the age of 18 and started peritoneal dialysis or home dialysis in September 2011. I am happy to report that five weeks ago I received a kidney transplant from a deceased donor through Beaumont Hospital. My form of kidney failure is hereditary and unfortunately has affected four generations of my family. My father, Mr. Tom O'Halloran, has suffered with this illness for 30 years and is currently awaiting his third kidney transplant. So far he has been waiting for six years. It would be more common for a parent to be proud of his or her child, but I can say wholeheartedly that I am so proud of my father as a result of what he has been through. While I would always have loved to have given my dad a kidney, since that is not possible being here is the only way I can help him.
It is because of what we have been through or in my case what I still see my father going through that Mr. Kiely, Ms Betson and I would like see an improvement in the current organ donation system. In that respect we have two proposals we feel could greatly improve the current system of organ donation. Our first proposal is the employment of more co-ordinators in all acute hospitals. We feel that the role of the co-ordinator is extremely important, particularly in identifying potential donors and also in comforting families who have decided to donate their loved ones' organs. At present Beaumont Hospital has six co-ordinators with none in any of the other acute hospitals. As a result we believe potential donors are being missed. Having two co-ordinators in each acute hospital would go a long way towards ensuring that organs are not being overlooked and result in more transplants thereby saving more lives.
Our second proposal is the establishment of a national organ donor register, which we believe would encourage more people to sign up indicating their willingness to be a donor. In this age of technology, this seems the most effective way to obtain donors. The UK operates a similar register and after running a campaign at the start of the year to highlight organ donation, an additional 147,000 people registered. While I appreciate that it has a greater population, as this form seems to work there, why should Ireland not establish a similar register?
The newly introduced driving licence format gives an opportunity to tick part 4 in question 20 agreeing to become an organ donor whereby code 115 will appear on the licence. The Government is already in effect collecting this information therefore making it easier to establish a register. For people without access to a computer we feel that organ donor cards could still be used but perhaps a prepaid envelope should be included with the card allowing them to send their details for entry into the organ donor register. It would be imperative for all acute hospitals to be able to access this database should an issue with organ donation arise.
Over the past nine years there has been a significant increase of 785 patients needing dialysis. There are various reasons, including obesity, diabetes, and high blood pressure. The end result is that the number of patients needing dialysis is increasing annually. As of 31 December 2012, some 1,828 people were on dialysis at a cost to the State of €118.9 million. This can be compared with the cost of transplant per patient at €96,000. I should say I got these figures from the HSE. If we were to increase kidney transplants by 100 each year to reach a target of 250 per annum, the cost to the State would be €24 million, thereby reducing the burden of dialysis on the State to €94.9 million. It should be noted that post-transplant the cost of maintaining a patient on drugs and hospital visits is approximately €10,000. An estimate is that each transplant results in a saving to the health service of in excess of €830,000 per patient over the lifetime of the graft, which is approximately 15 years. An increase in transplant activity of 100 transplants therefore results in savings of €83 million over the lives of those 100 patients when compared with maintaining them on dialysis.
Since I received my kidney transplant and after consulting various renal consultants and clinical nurses, I have been informed that the rate of rejection of a kidney transplant is now minimal. This is due to the exceptional cross-matching in Beaumont Hospital and advances in immunosuppressants. Therefore the medical staff rarely see rejection anymore. While I say that the average life of a kidney transplant is between ten and 15 years, as a kidney recipient, I am certainly aiming for many more than 15 years. Hence the saving of €830,000 I mentioned earlier could possibly be greater.
The kidney transplant programme in Ireland is at a critical juncture where, in order to further develop the programme for both living and deceased donors further investment in infrastructure is needed. The investment would result in a doubling of the life expectancy in patients with renal failure and a saving to the health service of in excess of €240 million over the next ten years. Expansion of kidney transplantation to 250 transplants annually would result in the following benefits over the next ten years: a reduction of more than 1,000 in the number of patients maintained on dialysis; a reduction in dialysis treatments of 1.4 million; a reduction of 2.8 million patient journeys to dialysis treatment centres; and a doubling of the life expectancy patients would have if they continued on dialysis. All those figures have been supplied by the HSE.
Having been on two forms of dialysis over 17 months - I know Mr. Kiely will agree with me on this, I cannot overemphasise how my life has been transformed in just five weeks. I have never felt better. A weight has been lifted from my shoulders and my life is my own again.
The following needs to be done in order for Ireland to reach its full potential of donors. We need to train more co-ordinators in all acute hospitals. We appreciate there would be initial costs to such a project, but as highlighted by the figures I quoted earlier, the cost would be greatly outweighed by the benefit of getting patients off dialysis and improving their quality of life. We need to establish a national organ donor register that is accessible by all acute hospitals.
The information could be collected on this register or on the new driving licence application form. Promoting living donors could be achieved by trying to reduce the time it takes for cross-matching and work-ups. People could be encouraged to donate through incentives. In some parts of the United States tax incentives are offered to those who offer a kidney to a loved one. In the past week, Australia announced it would pay three weeks wages to anyone who agreed to become a living donor to a loved one to a maximum of AU$3,600. Perhaps Ireland could consider a similar or different incentive to encourage living donors.
Public awareness is extremely important. We feel most people not affected by organ donation do not fully understand its implications or how they can help. Recently, and unbelievably, I was asked by a man in his mid-30s what was dialysis. This is why educating and informing is so important. Real-life stories are the best at achieving this. For my part, six months ago I decided to establish a website, kidneyfailuremystory.com, with a view to raising awareness of dialysis and documenting how it has affected my life. In a way I wanted to give hope to other patients who had just started dialysis. At times the isolation can be immense. To date, in less than six months, more than 19,000 people have viewed the site. If only a fraction of these 19,000 people decide to carry a donor card as a result I will have been successful in raising awareness. At no stage has anyone ever disagreed with soft opt-out. Everyone has been in favour of it.
Mr. Kiely, Ms Betson and I hope committee members have found our presentation informative, and that they appreciate our concerns regarding organ donation. While we do not expect miracles we would like to see an improvement of the current system, a change for a better, and a more positive future for all patients awaiting any form of transplant, whether heart, lungs, liver, pancreas or kidney. Who knows when any of us or our families may be affected by organ failure. It should be noted one is three times more likely in life to need a transplant than to have one's organs donated. Since the numbers awaiting transplants are growing yearly we cannot emphasise enough the real need for an immediate improvement. For this reason we are in favour of soft opt-out and for change sooner rather than later. I thank the committee.
I thank Ms O'Halloran, Mr. Kiely and Ms Betson. This afternoon they will speak in the audio-visual room at a meeting organised by Deputy Patrick O'Donovan. I hope other Members of the Oireachtas who are not here this morning will be able to attend. I thank the witnesses for appearing before the committee.
Our next set of speakers from the Irish Kidney Association are Mr. Martin Doody, chairperson, and Mr. Mark Murphy. I apologise on behalf of Deputy Ó Caoláin, who must speak in the Dáil on the Order of Business on behalf of Sinn Féin. I also apologise on behalf of Senator Marc MacSharry, who must also leave to attend the Order of Business in the Seanad on behalf of Fianna Fáil. Deputy Ó Caoláin asked me to express his support for the witnesses this morning.
Mr. Mark Murphy:
I am the CEO of the Irish Kidney Association, IKA. I will commence by giving the committee a brief outline of the history and evolution of the Irish Kidney Association and treatment of kidney failure in Ireland. Dialysis as a treatment is 70 years old. It came to Ireland in 1958 and kidney transplantation started in January 1964. In 1978 the Irish Kidney Association was founded by three groups of kidney patients coming together from Dublin, Cork and Galway, where haemodialysis was available. The catalyst was the need to start a public awareness campaign highlighting the need for kidney donation after death. The first kidney donor cards were produced by the IKA for the first awareness campaigns, which were ten years after the UK health system had produced its cards.
As time moved on many more haemodialysis centres were opened, some funded and others built by the IKA. The IKA grew along with the success of dialysis and transplantation. A new drug, cyclosporine, was discovered, which is very effective in stopping the body from rejecting a strange new donated organ. This permitted far superior kidney transplantation and liver, heart, lung and pancreas organ transplants also became possible. Along with kidney transplantation they are now considered normal surgery and expected by society. At present in Ireland, out of 3,900 patients with failed kidneys 53%, or 2,100, are transplanted and 47%, or 1,800, are on dialysis. Including all other organ transplants, just under 3,000 people in Ireland enjoy extended life because of organ donation resulting in transplantation.
Anyone who says the Irish organ donation and transplantation system is not working is wrong and misinformed. What is true, and the reason we are before the committee today, is that Ireland is the only country in Europe which has never legislated for the organ donation and transplantation process. What we have done is transpose last August the EU directive on the quality and safety of organ donation and transplantation into a Department of Health statutory instrument. The Houses of the Oireachtas have never willingly debated organ donation and transplantation, except for Senator Quinn’s Private Members' Bill, No. 43 of 2008.
The discussion today surrounds the consent we seek from the public for deceased organ donation. For the past 49 years this has been informed consent by the next-of-kin of the deceased. Situations such as where no next-of-kin are available, next-of-kin not being able to make up their minds in time, or a dispute within a family are described as “no consent” and organ donation does not proceed. Obviously organ donation does not proceed if consent is refused, but this decision is grouped together with the other situations I described and labelled “no consent” in all the records available to us. This dilemma of "no consent" has frustrated people across the globe, particularly in Europe where organ transplantation is advanced but as many as ten people a day die because of the lack of donated organs.
Some jurisdictions created a law of presumed consent. The Spanish were the first to do so in 1979 and many countries chose to follow. In the course of the following ten years, the Spanish realised creating this consent law made no significant difference to the donation rates and there was a wide variance in hospitals' organ donation rates. Spain realised the shortage of organ donations was not because of the public’s lack of willingness; it was much more to do with the clinical practice and process and the individual skills of health care staff in dealing with donating families. In 1989 the Spanish created an organisation, Organización Nacional de Trasplantes, ONT, which trained and placed organ donor co-ordinators in hospitals and organised the organ donation process. As a result, Spain has led the world's organ donation rates ever since. It averages 35 donors per million of population. Other countries which followed Spain’s example are achieving more than 30 donors per million of population as a consequence.
The architect, and head, of ONT, Dr. Rafael Matesanz, repeatedly states that changing laws on consent does not change organ donation rates. One must change clinical practice inside hospitals to increase the rates. The practice in Spain is informed consent, and is internationally recognised as being so regardless of what the law on the statute books suggests, which is presumed consent. The rest of Europe found the exact same, and hard or soft presumed consent is not practised anywhere in Europe, where all countries use informed consent.
In our strongly held view it is worth considering the point that renaming our consent system to suggest presumed consent, will simply confuse and divide the public. The Irish people like to be asked, and not told, to do something. Some people have no next-of-kin, some are entirely estranged from their families, some are separated, and not legally so, awaiting divorce, and some relatives will not be found in time.
How is consent achievable for these people? Should a decision posted on a register be acceptable for organ donation to proceed in these circumstances? Could we go a little further and suggest that the recorded wishes of the deceased should be paramount? We advocate, as do others, for a national organ donor registry to be used to show the next of kin the proof of decision by the deceased in his or her lifetime. Should we take the decision in the registry as consent if next of kin are not available? That is food for thought. That might require written consent rather than an online registry. If so, why not consider written consent by the person as consent after their death in the circumstances I have described where next of kin are unavailable? NHS Blood and Transplant issued a press release last week announcing that the UK had increased organ donation by 50% in five years. They did not alter their consent system. They changed clinical practice, as we are suggesting we should do.
Creating a consent law that is different in name but in practice will be operated exactly as best practice dictates - which is informed consent - is foolhardy and will only lead to unnecessary confusion for the public. We must introduce the Spanish organ donor co-ordinator model and the infrastructure surrounding organ donation to make real changes. We can increase our rates just as the UK has done and save and extend the lives of 50% more people as a consequence. The least important issue in the packages of changes the committee will learn about in these presentations today is the consent issue. The infrastructure proposed will change everything for the better. Ironically, the Spanish, Croatians and other European countries have proven that this infrastructural investment returns net savings in costs for other treatments that far outweigh the initial investment. At worst, it will be cost-neutral on our health system and we will improve and extend many more lives.
Mr. Brendan Gilligan:
I am a heart transplant recipient of 11 years. The first heart transplant took place in the Mater Hospital in September 1985. Until the end of December 2012, there have been 296 heart transplants in Ireland. The Irish Heart and Lung Transplant Association is a non-Government funded patient group. We welcome the opportunity to put forward our view on the proposed changes in organ donation from opt-in to op-out and the problems this would create if it is changed without specific measures being put in place beforehand.
Ireland is a very giving and altruistic society and our current donation rates, while not the highest in Europe, are still about 20 per million of population which ranks us just above mid-table in the list of European countries. However, we can and should do better. There is no evidence that presumed consent soft opt-out by itself will improve donor rates and to consider it without having the necessary infrastructure in place to support it would harm the gift of life ethic, which is so important to the idea of organ donation.
Therefore, before considering a change from opt-in to opt-out, let us look at the infrastructure that needs to be in place. First, we need specialised donor co-ordinators in all our major hospitals. As alluded to by Mr. Murphy, the NHS Blood and Transplant recently released details of a 50% increase in donation figures over the past number of years. One of the major factors in achieving that was the employment of a network of 250 specialist nurse co-ordinators throughout the UK system. Second, we need a national donor registry. The Government needs to give sufficient resources to publicity campaigns across the country to inform people of the meaning of presumed consent and to promote donor awareness. We also need proper funding for our national organ donation transplant office to allow it to function to its full potential. The importance of the infrastructure cannot be underestimated and will require additional resources to ensure that presumed consent soft opt-out is introduced properly.
It would be wrong for committee members and their colleagues to legislate for a change to opt-out thinking that it will improve organ donation and transplantation without first addressing the weaknesses and gaps that exist in our current system. We support the premise of presumed consent soft opt-out but only if the aforementioned infrastructure is set in place beforehand. We owe it to the public and the many people awaiting a life-saving organ transplant to ensure that this is introduced with the necessary measures in place.
I thank Mr. Gilligan for his presentation. I should also have welcomed Mr. Martin Doody, chairperson of the Irish Kidney Association. I know he will be taking part in the question and answer session later on. Our final speaker in this segment of the meeting is Mr. Philip Watts, chief executive officer of Cystic Fibrosis Ireland and the Irish Donor Network. I welcome him and thank him for his patience.
Mr. Philip Watts:
The Irish Donor Network, IDN, is a network that brings together all the patient groups with a direct interest in and concern about organ donation and transplantation in Ireland. Our role is to encourage and facilitate organ donation and shape policy in respect of transplantation and donation. Much of our work has been done behind the scenes over the years. We have contributed much in terms of a positive atmosphere towards organ donation in Ireland. At the outset, it is important to say there is a division of opinion among us in respect of the question of soft opt-out. Most of the groups in our network are in favour of moving to that process but we respectively and gently disagree with our colleagues from the Irish Kidney Association. There is a significant amount on which we do agree but we disagree on this issue. The other groups who are in favour of moving to a soft opt-out position include: the Alpha One Foundation, which is represented here in the public gallery by Ms Catherine O'Connor; Cystic Fibrosis Ireland, which I represent; the Irish Heart and Lung Transplant Association, which is represented by Mr. Gilligan; and the Irish Lung Fibrosis Association, which is also represented in the public gallery today.
We are in favour of moving to a soft opt-out position and we understand this position will be presented by the Government. All the Government has said on this issue to date is three lines in the programme for Government 2011-2016 so there is an onus on the Minister to set out in more detail what exactly it means by shifting to an opt-out position and to explain what a soft opt-out position is. That needs to be done sooner rather than later. Under no circumstances would the groups we represent in this submission support a hard opt-out approach whereby next of kin would not be consulted. Next of kin should always be consulted in respect of organ donation. This is the major change between now and 2009 when this issue was considered before and the Government was suggesting a hard opt-out position. We agree with the Irish Kidney Association that those countries that profess to operate a hard opt-out system whereby next of kin are not consulted, for example, Austria, do not actually apply it in practice. The IDN acknowledges the excellent individuals involved in transplantation and co-ordination, such as Ms Phyllis Cunningham with whom we have worked for many years and who is representative of the excellent standard of transplant co-ordinators, surgeons and teams and the procurement team. We contend that without their dedication and skill, often working far beyond what they are called to do, transplantation and donation rates would fall considerably.
We support a move to soft opt-out but we agree with Mr. Gilligan's argument that it must be accompanied by a package of essential measures. The last thing we want to do is move towards a soft opt-out position and then see no difference in the organ donation and transplantation rates in a year's time.
The infrastructure for transplantation and organ donation must be improved. The committee has heard a number of people, including patient representatives, state that a key issue is the appointment of a network of donor co-ordinators who would be assigned to major hospitals with ICU units. Basically, they would be medical and nursing personnel who would ensure the smooth operation of the organ and transplant process, including protecting the interest and welfare of families who choose to donate organs in very difficult circumstances.
We have, believe it or not, a national organ donation and transplant office. It does fantastic work and is led by Professor Jim Egan but he has no resources. He carries out the work in addition to his day job as co-ordinator of the lung transplant programme at the Mater Hospital with virtually no secretarial support. If we are serious about co-ordinating organ donation and transplantation, adequate resources must be given to the office.
I have heard staff at the Department of Health say that they will not develop a national organ donor registry. How can people opt-out if there is no registry? One simply needs to design a website that will allow people to indicate their preference. We must also list a menu of organs to donate because some people may be happy to donate their kidneys but not lungs. It is important to give them a choice.
From a lung transplant perspective, and I know that Ms Catherine O'Connor and Mr. Brendan Gilligan would agree, we need to take specific measures to improve the rate of heart and lung transplantation in Ireland. Top priority should be a replacement for the very fine surgeon, Professor Freddie Wood, at the Mater Hospital. There is also an inadequate number of rooms for surgery, preparation and recovery at the hospital and we need seven rooms for a transplant programme. A soft opt-out system will make a difference based on other experience but not without these specific measures that I have outlined. I agree with the soft opt-out but only as part of a package of measures. A soft opt-out cannot be introduced on the cheap.
I thank Mr. Watts for his presentation. I welcome a delegation to the Visitors Gallery that consists of Ms Nicola Cassidy, Irish Lung Fibrosis Association, ILFA, Ms Lorna Murphy, ILFA and transplant nurse at the Mater Hospital, Ms Catherine O'Connor and Ms Mary O'Connor, Irish Donor Network, and Ms Patricia May. I call on Deputy Kelleher to commence for Fianna Fáil.
I welcome everybody here. I found the presentations informative and inspiring. To be truthful, when I have read about a living donor I wondered how I would respond if my brother looked me in the eye and said "Bill, it's life or death for me". I admire the people who have donated. Many of us would probably find it hard to make such a judgment call.
With regard to the broader issue, I support the soft opt-out option. Some people may know Dr. Patrick Hennessy from Cork who advocated donating and received a kidney. I know him very well and have visited him a number of times. Ireland has a low donation rate of only 20 organ donations per 1 million of population. I do not have an intimate knowledge of the infrastructure that is required. I have wondered whether the low rate is due to a cultural or religious factors. Is there a reason we do not proactively donate organs? Ireland is an altruistic nation in many ways. Is there a reason Ireland does not rank high in the table of countries that donate organs? Is it simply that we do not have the proper infrastructure? Do we not have enough donor co-ordinators in the trauma units and accident and emergency units in hospitals? Are there other reasons?
Very often legislation does not necessarily change the public's mind but it obliges Governments to do things about the legislation that they have enacted which means putting in place infrastructure in hospitals to encourage and allow organ donation. We must remember that two patients are involved in the process, the one that donates and the one that receives. I hope that organ donor co-ordinators in hospitals will have a strong understanding of donation and be trained in how to deal sensitively with people. Co-ordinators will have to deal with people whose loved one has or is going to have his or her life support machine turned off and his or her family will have strong emotions.
A family sent me information that their young child had been involved in a car accident but had subsequently died. Afterwards the parents regretted that they had not made the decision to donate his organs. They were very emotional. At the time their only focus was on their son and they never looked beyond that but sometime later they regretted not donating his organs. Whatever decision is reached on legislation and the presumed consent or soft opt-out, we must ensure that in all cases the family is consulted. It does not matter whether it is a hard or soft opt-out, in every case the family must be consulted and the infrastructure must be put in place.
I listened to wonderful comments on organ donation made by Mr. Joe Brolly, Mr. Shane Finnegan, Ms Noreen O'Halloran and others. Very often the committee talks about policy and administration but on this occasion it should promote the concept of organ donation. Aside from dealing with the appropriate legislation, we should advocate strongly and give people a platform to express ways to develop organ donation. We are talking about life and death here but organ donation needs proper administration. There have been advances in technology, medical technologies and immuno-suppressants. We should also examine North-South relations and the possibility of a strong island-based transplant system just like what we are doing for rare communicable diseases. We should work closely with the UK in that context. I know that there is strong co-operation between various hospitals. We should also set up an infrastructure that will allow us to improve our ranking in the league of organ donation. We need a strong international co-ordinating body and the EU is working on same. Mr. Joe Brolly and others have saved lives and are inspiring, I am emotional even talking about it. I am squeamish at the best of times and I do not like going to hospitals.
It is incredible that people generously donate their organs and I am not just saying that because the donors are present. I read a newspaper article published in the Irish Examiner about a family in Kilcully, White's Cross, County Cork. I do know what I would do if asked to donate. I thank everybody for coming here.
People hold varying views on organ donation but they must not damage the approach that the committee and delegations wish to reach. We must ensure that the matter does not become divisive in the broader context of encouraging more people to give life.
I thank the Chairman and I welcome the delegations.
The presentations have been very informative and quite emotional for those who have had recent transplants. Deputy Ó Caoláin was due to be the lead Sinn Féin speaker today, but he had to go to the Dáil for Leaders' Questions. He was anxious to hear the witnesses' contributions this morning and he understands how compelling their cases are.
I support the opt-out position. Family discussion on the issue is key to any successful scheme. It is important that people who are in favour of donating their organs tell their next of kin so that if there is a tragic accident it reduces the burden on the family to make the decision to donate the organ. I would also like to see specialist transplant co-ordinators trained in grief counselling based in every hospital trauma unit. When this model was introduced in Spain it led to a large increase in the number of families consenting to donate the organs of a loved one. It is important that we consider introducing a system to maximise the number of organs available.
I accept it is important to have a national organ-donor register. Ongoing public awareness and education are very important to promote donor awareness. What types of campaign do the witnesses plan to hold? Do they plan to go into schools? Sometimes there is a problem with lack of awareness. If schoolchildren grow up with it, it becomes second nature for the next generation. I found the witnesses' arguments based on their real live experience very compelling.
I echo what the previous speaker said and I thank the witnesses very much. I am quite new to this issue of organ donation. I lived in Belgium for approximately three years at the beginning of the 1990s, shortly after its system was introduced, and it was quite a hot topic there. I agreed with it at the time and I still instinctively agree. However, I wish to tease out some issues. I understand that 24 of the 27 EU member states have some sort of presumed consent or opt-out system in place. We need to consider those who are not in favour of the presumed consent model. After Belgium introduced the system in 1986 there was a significant awareness-raising campaign and perhaps the rise in organ donations could be attributed to the awareness-raising campaign rather than the legislative changes. People might argue that the US has one of the best rates of organ donation but it does not have presumed consent. Ms O'Halloran mentioned the tax incentives in one of the states. The US have what I believe is called a presumptive approach, whereby families are approached on the presumption that they will agree. With the exception of the representatives of the Irish Kidney Association, all the witnesses have mentioned presumed consent. There has been coherence on the package of measures that needs to be introduced. If the measures were all introduced, why would we need presumed consent? What difference would it make?
I found the presentations very informative and I am absolutely convinced that we need legislation. I had not realised we had an absence of primary legislation and that we only have the statutory instrument to introduce the European directive. Why would we choose presumed consent rather than a presumptive approach? Irish people do not like being told they have to do something and it is a very emotive time for families of potential donors. I want to ensure we get this right.
I wish to thank all the witnesses and commend them on their very comprehensive presentations. I recently spoke to a medical consultant who was involved in a team looking after a patient. They spent five hours in the operating theatre trying to get someone through a very difficult situation and they thought they had done a great job. They found that in the theatre next door there was a team of doctors down from Dublin doing organ harvesting involving a girl who had unfortunately had a tragic accident and whose family decided to donate the organs. They were extremely impressed by the co-ordination that was going on. That family's decision to donate organs resulted in the transplant of a liver, a pancreas and kidneys. After spending three or four hours on organ harvesting, they advised the consultant, to whom I spoke, that they were flying back to Dublin, with all the recipients already on the way to Dublin. They were then scheduled to continue on after midnight to complete the transplants. That indicates the commitment of the medical and nursing teams involved in the transplant area. We should acknowledge the great work they do. When we look at the health service we are very good at identifying the deficiencies. However, it is also very important that we give recognition to the work being done there.
Earlier this morning I raised an issue I have with the HSE. Does a specific person in the HSE have responsibility for this area or does each hospital act independently? When discussing co-ordinators in hospitals, the first question is whether one person should be answerable in the HSE and work from there. I agree with the witnesses. In the case I was discussing, the consultants in the hospital advised the parents that the person would not come through. The family had no one else to fall back on for assistance. Appointing co-ordinators is important, but is one person in the HSE responsible? Is there a mechanism for co-ordination between the HSE and the voluntary hospitals?
The European cross-border health care directive was passed in February 2011 and has to be implemented now. Is there now far more co-ordination between health services in Europe and particularly between the UK and Ireland in this area? Up to now each country has been working individually. With more specialisation, could we develop a more comprehensive service through more co-ordination between member states?
The key issue the witnesses have identified is that of co-ordinators within the hospitals. With regard to the possibility of a change in the area of consent, coming from a legal background I know the difficulties that can arise in dealing with the administration of estates. It is always a difficult time for families. I am certainly in favour of a change in the law in this area, and presumed consent, which is a better option at this stage, is something towards which we should be working. It also requires a major public information process. We achieved this in the area of road safety. This is one area that should be given priority from the point of view of national co-ordination and a national campaign.
I wish to thank witnesses for their contributions. In particular I single out those who shared very personal stories on their journeys involving organ donation, which is the nub of the issue. What would happen if it was my sister, brother or daughter? I have experience of it in that two years ago my uncle was a recipient of a kidney from another family member. I have seen the life-changing impact not just on him but on all of us in terms of our appreciation of him and how selfless the donor was.
Deputy Kelleher asked what choice we would make if we were faced with it. I commend those who spoke because it is not easy, and I thank them very much. There has been much talk in recent years about organ donation, particularly during the campaigns mounted in awareness weeks. In recent months the conversation has changed with regard to the soft opt out model, which is something we need to think about and something which I support. In my preparation for today I discussed this issue at home with family members and friends. An issue of which I became aware, and perhaps somebody might be able to shine a bit of light on it, is that gay people are not allowed to be organ donors. Given the amount of testing and tissue matching carried out in the Mater Hospital why can my friend, who happens to be gay, not carry a donor card? If this is not true it needs to be stated because I was confronted with it in the run-up to today's meeting. On the back of the very insightful weekend we had on marriage equality and the steps society is taking-----
I thank all of the witnesses for their presentations and say well done to Mr. Brolly for being a living donor. I was struck by Ms Quinn stating it was the ultimate gift she received. Ms O'Halloran stated her life is now her own. This goes back to what Deputy Conway stated, that we must measure it in our own lives. I have two boys and if they needed a donor I would want them to be able to receive a kidney transplant. As a mother I would think twice about donating their organs but if we introduce this it will change the ethos and it will be up for discussion in the family home. One is three times more likely to need an organ than to donate one.
Perhaps I misunderstood, but Mr. Murphy, the chief executive officer of the Irish Kidney Association, stated the status quo is okay. If I were on dialysis I do not know whether I would be that happy. He stated 1,800 people are on dialysis and 3,000 people are enjoying new organs. I am aware of a UCD student from Waterford who has great difficulty. He goes into hospital three days a week and if he wants to go home to his family at weekends, like any student, it must be organised with Waterford Regional Hospital. It is a huge issue if he wants to go on holidays. He is a young student and wants a life ahead of him. I find it hard that the CEO of the Irish Kidney Association stated the status quo is fine. I will give him plenty of time to answer. He stated we need a co-ordinated network in the hospitals, but my understanding is those who want the soft opt out option also want this. What is important is that the family has a say. Mr. Murphy gave examples of people who live alone or are separated, but having this conversation now will give Irish people time before they are ill or on their deathbed for this decision to be made. We are discussing a new ethos whereby people will discuss the soft opt out.
I thank the witnesses for appearing before the committee. I apologise for being late for the meeting but I had another appointment. I have huge admiration for people such as Mr. Brolly - and the example he has set is second to none - who give of themselves to those in desperate need. I am in favour of what is collectively sought, which is the soft opt-out option. Prior to the meeting today I did a quick run around of my husband's brothers and sisters and my own to see how many of us had organ donor cards, how many of us did not and the reasons for this. Just under 40% of our family members have organ donor cards, which is good, and I am one of them. I cannot take the credit for going out and getting my organ donor card. The only reason I have it is that my husband brought home the form years ago. With regard to the members of our family who do not have an organ donor card, it is not because they do not want to carry one it is just that they have not got around to organising it. Life is busy. Taking this as a small yardstick, the vast majority of people in Ireland do not have exceptional reasons for not carrying an organ donor card, they just have not got around to it. Presumed consent is very worthwhile and it is incumbent on all of us to get behind it and ensure it happens and that we will not be speaking about it again in a number of years.
As this is not owned by anybody in the Department of Health or the HSE, I could not find a definitive answer on how much the ICT infrastructure would cost if we were to put it in place, how much the network co-ordinators in each hospital would cost and how we could fit it into the budgets. If it is not being measured it is certainly not being considered for future budgets. Do any of the witnesses' organisations have these figures so we can take them back and begin real substantive talks about how we can ensure it is included in budgets in the coming years?
I am not a member of the committee but I have been listening with interest to all of the contributions. I thank the Chairman and the committee for the work they are doing on organ donation. I come from a donor family, and this is the first time I have spoken about it on public record. Almost 24 years ago I tragically lost a sister, my nearest sibling, to a brain haemorrhage. At the time we as a family spoke about organ donation. It is something which appears at a very tragic moment in a family's life and we did not have much time to think about it. We decided she would donate and I must say, almost 24 years later, it is one of the most fulfilling things we did as a family and is something of which we are very proud. She donated two kidneys to two different individuals, one a young man the same age as her and another man who was quite a bit older. Both men are now close friends of the family and visit us and we speak openly about it. We gave them a whole new life. I am very much in favour of any proposal which would encourage donation in any way. I have listened carefully to the arguments on presumed consent and we should consider it. If people wish to opt out then let them do so. Organ donation is a valuable gift which we can all give.
Mr. Mark Murphy:
I have a number of questions to answer and other questions would be better answered by Ms Cunningham. I will go directly to Deputy Mitchell O'Connor. I wish to clarify an issue as she stated I was complacent as such. I am very clear the consent issue is the least important issue. What needs to change is the infrastructure. The reason I state the consent issue is the least important is because it is merely renaming what already exists.
No one is suggesting that the practice in which the manner consent is conducted in a hospital should change. Why change the name of it for the public? The family is always contacted. If consent is not achievable, should we consider other ways? Renaming what is already the practice, that is, informed consent, might not be clever. I do not know how it will affect the public other than to divide the public. A poll was done, which we had nothing to do with, and of 5,000 people, 46% did not want presumed consent, 47% wanted presumed consent and 7% did not have an opinion. The 5,000 were clearly divided.
As far as I am concerned, 90% of the public are willing organ donors. Let us not use the term "presumed consent". Everyone is trying to get away from it, but one cannot. If one says "soft informed consent", the term "presumed consent" pops out. The public hears the presumption of consent. It does not understand soft in, soft out. "Presumed consent" is the phrase that creates emotion and division in the public and I do not want to have anything to do with it, if members do not mind me saying. Soft opt-outs do not work. Immediately, it gets converted into meaning presumed consent, as it did by all members. That is what I-----
No. I have an open mind in this regard. Were Mr. Murphy to take his hypothesis to its natural conclusion, the status quo would be maintained because of a confusion in terminology and an unwillingness to embrace the need for everyone to buy into this approach. Am I wrong?
Ms Phyllis Cunningham:
I would not like to call it a trick, but a great deal is involved. Everything is important. We need public awareness. It is important that families have been able to discuss and decide on this matter in normal times. Making that decision is difficult and those people are wonderful. Co-ordination is important, but so are other factors. Families have declined to make donations - we do not like to use the word "refused" - because they did not know what their loved ones wanted. People regret that they were unable to make this decision.
Many people want to donate. I have been involved in this field for a long time. When I discussed the matter with the members of my family, they wanted to be donors, but they never got cards. It is not an issue one wishes to raise with one's children, but if people do not want to donate and if they can record that-----
Ms Phyllis Cunningham:
No. We need to determine whether donors are being lost. We need an ongoing audit to determine the areas we need to improve or develop. We have set up a new national organ donation and transplant office with the HSE. Professor Jim Egan is its clinical leader.
Ms Phyllis Cunningham:
Many of us are involved in that office. A submission is being made to the Department covering a range of topics, including an increase in staffing and public awareness. The latter is key. As with the Road Safety Authority, RSA, we need to invest money in national campaigns to promote organ donation and inform people of the benefits. Gays are not excluded as organ donors.
Mr. Brendan Gilligan:
The Chairman's app of state. I concur with Ms Cunningham's remarks. The key is public awareness. The Government will need to invest resources if it is serious about what it is about to do legislatively. Attempting to change the wording without the proper measures being in place first will cause problems. We must be sure that they are in place.
Mr. Martin Doody:
I have had two kidney transplants and a pancreas transplant and would not be addressing the committee today without the altruism of my donor family and the skill of the wonderful people at Beaumont Hospital. I would not like anyone to believe that I was in favour of the status quo, as I am not. As Ms Cunningham, Mr. Gilligan and Mr. Murphy have stated, we need to change the public perception. If we had a fully financed public awareness campaign, the Irish people would respond.
The register is a must. If people are asked to put their names on a register, they will. Being able to show a donor's family that he or she took the time to put his or her name on the register instead of it simply being the case that he or she did not opt out is a strong endorsement. This is where our resources should focus, not on changing the name.
Mr. Philip Watts:
In the past year in the UK, there has been a fantastic increase in organ donation and transplant rates. The British Medical Association, BMA, released a press release two days ago to the effect that this improvement was due to the infrastructural changes. It believes that the rates would be even better if the UK moved to a soft out situation. It is a crucial part of a package.
I agree with Deputy Kelleher, in that the tone of the debate is important. We respect the Irish Kidney Association's right to differ, but the debate's tone is crucial in terms of keeping the public on board.
The costings issue is vital. In these straitened economic times and given the strain on our health system, measures must be costed, for example, donor co-ordinators and websites. However, if these are not put in place, there is a danger that this move could be botched. The Minister must accept the message that he cannot introduce a soft opt-out without the rest of the package of measures.
I thank the two patient representatives and Mr. Brolly. What he did personally was exceptional, but his campaign has brought this issue into the public domain. It has been important.
Mr. Joe Brolly:
We in the North have done a great deal of work. I had privileged access to the First and Deputy First Ministers as well as the health Minister. We worked with all of the parties. I say "we", but I am a part-timer. There is unanimity in the North on the soft opt-out. All of the stakeholders, patient groups and clinical leads are in favour of it. I will revert to this issue.
All of the parties agreed that it was important that no misinformation be peddled and that the message be given clearly to the public, namely, the proposed system is based on a family's written and informed consent.
Regarding the US rates, America runs a market model. Everything is about money. We are a neighbourly society. Society must decide how it wants to approach the issue of organ donation.
In that regard, there has been a subtle but very effective change throughout Europe. It is not a coincidence that all of the leading countries operate this model. The York Group, which conducted the research for the UK's organ donation task force, and its document, Make Life your Legacy, has been circulated to members - which I assure them they can trust - and all other recognised studies incorporated into the UK donation task force report and, in turn, into the government programme, concluded that when all other variables are taken into account soft opt-out has a significant beneficial affect on organ donation rates.
My second point is an important one. I have circulated members with the Department of Health's circular to us and the comments by the head of the UK donation task force, Ms Elizabeth Buggins. The new organ donation infrastructure in the United Kingdom, including Northern Ireland, has been in place now for five years. Scotland is now considering moving to soft opt-out because the rates there have remained relatively static. Wales is in the process of finalising its public consultation on the issue. There is unanimity in Northern Ireland on this. There is a reason for this. After five years, the level has increased from an atrocious 13 to 14 donors per million to an acceptable 20 to 21 per million. This has given us stability but nothing more. After five years of flat out publicity to which a huge amount of resources was devoted - members will see in the documents circulated what has been devoted to this area - only 28% of people are on the organ donor register. The rate of family refusal in Belgium hovers between 2% and 5%. The rate of refusal in Spain is the same. The reason there is not a strong living donor programme in Spain is they do not need it.
Mr. Joe Brolly:
It is evident from the Spanish rates in terms of organ donation. I have worked with Mr. Nizam Mamode, head of transplant services at Guy's Hospital. He has a very close working relationship with Dr. Rafael. The document I have circulated was vetted by Mr. Mamode. This is not my document. While I put it together and my name is at the end of it, many other people contributed to it.
In spite of the advances in England, while last year organ donation increased to approximately 20 per million of population there were 125 refusals by families, which equates to approximately 800 potentially life saving transplants of people on the organ donor register. Within the constraints of the opt-in system the debate now beginning in England, with which we disagree because we believe that donation is a sacred and family gift because donation also affects the family of the deceased person, is on why a family should be allowed to override the consent of a person who signed up to the organ donor register. We believe that is a dangerous route to go down because death is a communal thing in the end. In an effort to move this on, the head of the organ donation task force in the UK has stated that she believes that family consent should be over-borne by a person's name being on the register. The answer to the problem of family refusal is soft opt-out. The reason for this is set out not only in the international research but in the British Medical Association's recent report, which is set out in the document circulated and which I will not bore members by reading.
I agree with Deputy Regina Doherty's comments. People with whom I usually discussed football are now raising this issue with me. When the question becomes, "Is there a reason we should not be organ donors?" the cultural shift is affected. As stated in the British Medical Association's report, organ donation then becomes the default position, which with public support changes cultural expectations in society and represents a more positive view of organ donation. I do not believe there is any particular magic to that: it is just logic. Appendix I, which was drafted by Dr. Paul Glover, who is the counterpart of Professor Jim Egan in the North, states that organ donation rates in the North have increased by 54% since the implementation of all of the changes. However, attainment of the maximum donor potential has not been fully realised despite the creation of this infrastructure, which contains aspects of the Spanish model. In a nutshell, this does not pose any threat: it is a good message. People will be content once family consent is at the heart of what is proposed.
On the issue raised earlier - I cannot recall which Member asked the question - about doctors asking questions, this does not arise where specialised nurses exist. We have 14 specialised nurses in the North, who are embedded in the intensive care units. Their first job is to ask the questions. It is not the job of doctors to do so. As Ms Cunningham will agree it would not be the job of someone like Dave Hickey, who at 2 a.m. is driving to Sligo hospital to help procure organs, to do so. There are embedded people in the system whose job it is to spend time with the families and ask the questions in a sensitive way. In those circumstances, the three-pronged approach of soft opt-out, proper infrastructure and good public awareness is the way to go, as is the case in the leading donor rate countries. There is no reason we ought not to follow that.
Mr. Shane Finnegan:
I would like members to take the following away from today's meeting. Everybody is aware of the advances in terms of organ donation in the UK during the past five years. It has been very positive. Why then is Wales, Northern Ireland and Scotland moving to a system of soft opt-out? The answer is because they can see another 50% increase in organ donation as a result. That is the bottom line.
Ms Christine Quinn:
On awareness, I got sick suddenly and knew nothing about organ donation prior to my transplant. I never had a problem with it but was never asked about it. Key to all of this is awareness and the availability of proper information regarding the procedure. Following my transplant, I went back to work in June. I work in a large organisation. I have discussed organ donation with my work colleagues and my family. I have yet to meet any person who can give a reason people should not donate organs.
Ms Annette Betson:
As a living donor, I would like to see more resources for Beaumont Hospital and more public awareness, in particular among school-going children. We have done this in our local area and it has worked really well. The feedback from it has been fantastic. It is all about information and awareness. I thank the doctors, nurses and staff generally at Beaumont Hospital who are doing great work.
Mr. Michael Kiely:
People often assume that organ donation primarily follows a road accident, the number of which nationally is high.
In reality, very little comes from that source. Donation occurs mostly from when people get head trauma, bleeding in the brain and such conditions. People are kept alive to be brought to hospital, and there should be more resources put into sustaining people on ventilators. These are the examples of where organs are available and why we need co-ordinators. The doctors travelling with emergency cases should sustain life until patients get to a trauma centre so they can be looked after properly.
Ms Noreen O'Halloran:
Deputy Kelleher asked why we have so few donors and I reiterate what Ms Quinn said, namely, it is simply about a lack of education and information. Like everything, unless the issue is at a person's doorstep or there is experience of the matter, people will not be educated enough. For example, after I received my transplant I was asked if I would still need dialysis. I was often asked if I could miss dialysis and as I noted in the presentation, somebody recently asked me what dialysis is. People do not understand the issue and the education just is not there. If people had more information, they would be more likely to keep a donor card.
Mr. Mark Murphy:
I have the statistics for Europe and Ireland for the last number of years. The Spanish living transplant programme is greater than ours and growing far more rapidly. The Spanish have over 12,000 people on dialysis and complacency is not as much of a problem because the demand is so great and dialysis is so expensive. One sees that although it is not as consistent as we would like, over the past six years Ireland has been in the top ten in Europe with regard to the deceased donation process, although not for the living donation process, where we are lower. We are not awful and we are far from it. We can improve greatly and we have a willing population. For the past 24 years, awareness campaigns have been under the remit of the Minister for Health's allocation from the national lottery. We receive a quarter of what we used to get per annum. The lottery is not tax-based revenue and we have never got such money from the Exchequer.
If we compare it to 22 transplanting hospitals in the UK, Beaumont Hospital, for its size, does a great proportion of procedures. It is the only kidney transplanting hospital in Ireland, which is right, as it has great practice. Nevertheless, it is a very small hospital to do what it does in comparison to the hospitals in the UK. Infrastructure in intensive care units is a problem and the audit is absolutely necessary. Although we are not bad, we could be far better. I am not complacent and do not want to be accused of that. Those who know me realise that I am not complacent about this. We are in the top ten countries.
I apologise for not being here before but the wind took the front off my office last night. At least I do not have to blame vandals. I did not get much of a chance to read the submission but I know about organ donation. Some 20 years ago a family member passed away after being involved in a tragic hit-and-run. At 20 years old, that person had a donor card and so the organs were donated in Beaumont Hospital. Families may be reluctant when standing around the bed to make such a choice and people hold on to any flicker of life. Although I have attended many family funerals and seen many people passing away, it was most difficult to walk out of a room which had somebody being supported by a machine, knowing that 20 minutes later that person would not be in the world. There is a benefit as we attended, through the Irish Kidney Association, a mass every year that commemorates people who have given organs. As a family, it gave us some comfort to know that people had received a gift of life in the process. That family member would have been 40 last week as he died two weeks before his 20th birthday.
There is a reluctance by family members to carry through on organ donation if they feel there is any glimmer of hope.
The process must involve education. This question may have been asked but is there any reluctance to authorise donations because of religious beliefs? What kind of work is done in colleges and workplaces to promote organ donation? Families who have gone through the process of giving consent should be given appropriate medical information, especially if people must give permission to switch off the machine. Somebody has mentioned that nurses are the first port of call and I remember that clearly. We were brought into a room and although I do not know if the nurse was trained in such matters, there was a sense of compassion in what she was doing which helped in the long run.
I am trying to get my head around this issue. I read Mr. Murphy's submission, which indicated that anybody who indicates that the high organ donation and transplant system is not working is simply wrong and misinformed. He also spoke about an organ donor registry. Why would people register if they do not carry a card? Why is Mr. Murphy so convinced that if people do not have a card, they will still go on the organ donor registry?
We do not always carry the cards. My children signed them years ago but I do not know where they are. I may change my handbag every week and I may not know where my driving licence or card are.
Mr. Mark Murphy:
That is the point about a registry. The donor card may have been the only card in a wallet 35 years ago and now we are swamped with them. Its day is coming to an end and we need a registry so people do not have to carry the card. There are phone apps and there are ways to get people on a registry so they will not have to renew a donor card every time a purse is lost. The card may always remain as a symbol but we need an electronic process. It is demanded by the public.
I remind people that this is the first of a number of meetings we are having regarding organ donation. There is an iPhone app for organ donation if members wish to consider it. This morning is about raising awareness rather than having a divergence of views, and we must try to continue the excellent work being done by advocacy groups and the excellent witnesses this morning. It is important we come from our meeting today and next week championing the idea and issue of organ donation, irrespective of Government decisions. We must broaden the public perception and encourage people to become organ donors.
I thank everybody for attending the meeting this morning. The human interest stories have been fantastic and have raised the profile of this issue. I particularly thank the witnesses and wish them continued health and success. I thank Shane and Joe for being, perhaps, the celebrity advocates. I also thank the members of the committee for their heartfelt contributions. I remind members of the Select Committee on Health and Children that there is a meeting of the select committee next Tuesday at 5 p.m. The joint committee will meet again tomorrow at 9.30 a.m. for our quarterly meeting with the Minister for Children and Youth Affairs, Deputy Frances Fitzgerald.