Jerry Buttimer (Cork South Central, Fine Gael) | Oireachtas source

I move:

That Dáil Éireann shall consider the Report of the Joint Committee on Health and Children, entitled ‘Report on Organ Donation’, copies of which were laid before Dáil Éireann on 1st October, 2013.

I welcome the Minister for Health, Deputy James Reilly, to the House, and I welcome the fact that we are having this debate on the report of the Oireachtas Joint Committee on Health and Children on organ donation. I pay tribute to the members of the committee who participated in the hearings, particularly Deputy Kelleher, who is absent today, and Deputy Ó Caoláin, the main Opposition spokespeople, for their cooperation and participation.

Early last year many of us in the House were contacted by people about organ donation. Those affected, either undergoing dialysis, awaiting transplant, who have received transplants or made donations left a lasting impression. One of the meetings that stands out in my memory was the one in which I had the pleasure of meeting Shane Finnegan and Joe Brolly, and people from Cork, to hear their stories directly. I was struck by their positive and uplifting stories. It was clear to me and to other members of the committee that we needed to reflect upon and change our policy on, and approach to, organ donation.

It is only when one sits down with people directly affected that one realises the severe impact transplants have on the lives of so many people, the waiting, the anticipation, the phone call, the ambulance, the journey to the hospital, followed by false dawns or success and new life, a second chance. The courage and bravery of all those I met was impressive. Their honesty in relaying their stories, in reliving what they went through, or what they were going through, was personal and touching. It was a privilege to listen to them. These meetings also highlighted many of the structural challenges which face organ donation in Ireland. Thankfully, the Department of Health under the Minister, Deputy Reilly, had also commenced a process of consultation on our policy. Everyone in this House, or in the Seanad, who meets many groups and vested interests on a range of issues knows that they all have a story. What struck me on this issue was the near uniformity of opinion on the same problems and difficulties across the country.

Our current system of organ donation is an opt-in one, which requires an explicit decision to donate to be made, either by the person prior to their death or by family members after death. Even though we have a generous culture of organ donation in Ireland, we consistently rank low, at just 23 in European league tables, behind all other countries that have a soft opt-out system. In June 2012, more than 1,700 Irish adults were receiving haemodialysis, yet, throughout all of 2012 just 163 renal transplants were carried out in the Republic of Ireland. To meet the needs of those receiving haemodialysis our health system should be performing in the region of 300 kidney transplants each year.

Our opt-in system, or expressed consent, is used by only a small minority of countries in the EU. Countries that have changed to the opt-out system have seen significant increases in their rates of organ donation. Over a three year period, after making the change to opt-out systems, Belgium saw its rate of organ donation increase by 100%, while over the same period, Singapore saw an increase of a massive 700%. Over recent years there have been suggestions that we should change to a soft opt-out system, with a presumption of consent to donate upon death, unless specifically stated otherwise. It is important to state that even if this change were made, we must ensure that in all instances a person's family has the final say. This maintains the principle that donation is a gift and would help to change public attitudes so that donation becomes the norm, not the exception.

This morning I heard Liam Neeson speak eloquently about his late wife's gift of organs, which has given three people a new opportunity to live a normal life. We have a chronic shortage of deceased organs available for donation. In 2011, when an estimated 250 to 300 kidneys were required, only 164 deceased kidney donor transplants were carried out. This suggests that our current system is not working and that a review is required so that the many people who are in need of an organ transplant can be helped.

The committee was of the view that as this issue is being, or has been, debated throughout the world, and it was about time we as a country started to consider seriously the changes we need to make so that our rate of organ donation can be increased. Countries that have changed to opt-out systems have seen significant increases in organ donation rates. Any similar increase here could have a very positive impact on those who require a transplant and ultimately would help save lives.

Last April the joint committee held two public hearings examining organ donation in Ireland. During those hearings we heard the views of a wide range of stakeholders, including organ donors, organ recipients, practising clinicians and surgeons, support organisations, the National Organ Procurement Service, the Irish Medicines Board and the Department of Health.

These hearings greatly enhanced the joint committee's understanding of the position pertaining to organ donation and reaffirmed our view that the transition to a soft opt-out system is a necessary one.

Over the course of our hearings, the sessions were held in a way to allow us hear from different advocates, those with direct experience, medical professionals and those involved in policy development and the various legal aspects. I will not name all the people from whom we heard but the testimonies of the people who received and gave organs were powerful. People such as Christine Quinn, Noreen O'Halloran, Michael Kiely, Annette Betson, Shane Finnegan and Joe Brolly, to name a few, struck a pertinent message with every member of the committee and those who were involved. Equally, we heard from a wide range of people on the medical and legal perspective including Professor David Hickey, Professor Peter Conlan, Dr. James O'Rourke, Dr. Colman O'Loughlin, Dr. Ruairí Dwyer, Dr. Liam Plant and Dr. Brian O'Brien, all people of experience with involvement in the medical field.

I thank all the witnesses who attended our hearings and who made submissions. They were informative and impressive contributions to the committee, which helped us in our work, and they gave us an insight we would never have got, and which we were required to get, to allow us prepare a report and make recommendations.

The Joint Committee on Health and Children warmly welcomes the Government's consultative process regarding its proposal to change the current practice of expressed consent or opt-in consent to one of opt-out consent in regard to organ donation in Ireland. Changing to a soft opt-out system has the potential to change public attitudes toward organ donation, and more importantly, to increase vastly our rate of organ donation. It is important that in such a new system, the family of the next of kin would always be consulted. This will ensure that the principle that donation is a gift is maintained.

The joint committee is strongly of the view that any transition to a soft opt-out system must be supported by increased investment in essential infrastructure, transplant surgeons and trained support staff. Each kidney transplant has the potential to save €680,000 over a 15 year period. A short-term investment in our organ donation infrastructure has the potential to deliver real long-term savings for our health system, not to mention the long-term benefits to the lives of organ recipients, which must be of paramount importance.

The joint committee welcomes the current public consultation on the proposals to change how Ireland operates its systems of organ donation. This underpins the ethos that everyone should have the right to participate in decisions affecting their health and to have their concerns heard. Individuals should be empowered to exercise control over their own health and to participate in the decision-making process around health law and policy. Any transition to a new soft opt-out system should be accompanied by a significant public awareness campaign prior to such changes taking effect.

The joint committee recommends that any transition to a soft opt-out system will only apply to organs available for donation to other patients and not to reproductive organs or other organs and tissues for research purposes.

All persons over the age of 16 with legally recognised mental capacity should have the ability to dissent from their presumed consent. For children under the age of 16 and those lacking the legal capacity to consent, the next of kin should retain full control over consent, and the opt-in requirement should remain in these cases.

The joint committee recommends the establishment of a national register on withholding consent to organ donation. This should be automatically accessible to organ procurement services and managed by the health departments.

Since we have published our report there have been significant developments in the area of organ donation. As part of budget 2014, the Minister prioritised the development of a robust organ donation and transplantation infrastructure. An allocation of an extra €2.92 million for organ donation and transplantation services in 2014 was made available. This extra funding is to be used to facilitate the employment of 19 whole-time equivalent positions including consultants, network link nurses, organ procurement co-ordinators, which are vital to the system, and quality officers. These additional resources will be a great help in increasing the levels of organ donation and transplantation and will be of benefit to patients and their families.

I hope this additional funding, along with the committee's recommendations, reassures those who have been sceptical about what the committee was trying to achieve. As a committee we recognise that changing our system of consent will only be of limited benefit without the necessary infrastructure to support the intended change. Our recommendations have clearly set out the need for a co-ordinated procurement and transplantation service across the country.

The Minister's decision to allocate additional resources indicates that he, too, is aware of the need to fund additional posts so that the overall system can be changed.

Over the course of the year I hope that every person in the Minister's office, the Department, the Health Service Executive and Members of this House will work to raise awareness of the importance of organ donation and also to ensure that the €2.9 million is used for the intended purpose. At the end of the year, I hope the committee will revisit this issue to allow us monitor the progress in delivering an improved environment for organ donation and transplantation in Ireland.

I want to thank all the members of the joint committee for their contributions and co-operation on this very important body of work. In particular, I thank Deputies Ó Caoláin, Kelleher and Healy, who is not present, and Senator van Turnhout on behalf of the Technical Group in the Seanad, along with the members of my party and the Labour Party, for their co-operation and diligence in this particular matter.

I also thank the Oireachtas Library & Research Service, the Clerk to the Committee and the secretariat for their assistance in the production of our report and in organising the hearings last April. Each week their work enables the committee members to carry out our parliamentary duties and without the dedication of our committee secretariat, our work would not be possible. Sometimes that goes unnoticed but it should be acknowledged today.

As a committee we all work together. We put aside our partisan rivalry and advocate on behalf of the people. We have political differences but for the most part we put them aside and work as a committee dealing with important and sensitive issues that transcend party politics. All members on the committee were united in endorsing this report. We want to work to see an all-Ireland system, North and South, in terms of an improved health system that delivers for people, in this case regarding organ donation. I hope this report can provide a template for a way forward in the area of organ donation and transplantation. I welcome the publishing of this report and that we are debating it in the Chamber of Dáil Éireann.

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