James Reilly (Dublin North, Fine Gael) | Oireachtas source

I hope that even if there were no Standing Orders the Acting Chairman would still call upon me.

I am delighted to have the opportunity to address the House regarding the Report of the Joint Committee on Health and Children on Organ Donation. Increasing the number of organ donors and organ transplants is one of my stated priorities and the joint committee is to be congratulated on the production of this report. The report arose from committee hearings last April, which discussed consent for organ donation and other issues pertaining to organ donation and transplantation. I echo the Chairman's thanks to members of the Opposition, Deputy Ó Caoláin, Deputy Kelleher and others on the committee who were very supportive during the course of these discussions regarding this initiative.

I noted with interest the contributions made by a broad range of people who were given the opportunity to address the hearings of the joint committee. Their submissions, which are included in the report of the committee, do not just make for interesting reading but for compelling reading and are of particular benefit to my Department in the work to frame legislation for the introduction of an opt-out system of organ donation.

All of us here are well aware of the enormous difference an organ transplant can make to the life of a recipient and to the lives of their families and loved ones. Organ donation truly represents a gift of life, and I note the emphasis the committee put on ensuring that the principle that donation is a gift is retained. I welcome that. Also, as some of the contributors to the committee emphasised, it can bring much consolation to the families of the donors and support them in the grieving process.

There is a global shortage of organs for transplantation. This applies to kidneys in particular, with renal failure increasing significantly. This situation is mirrored in Ireland where we do not have enough organs available to meet the increasing needs. All of us must work together to ensure that more organs are donated. In this context, the programme for Government commits to the introduction of an opt-out system of consent for organ donation with the aim of improving the availability of organs for patients in need.

The service plan for the HSE specifically allocated money to make organ transplantation more available and, in particular, to support live donors.

I firmly believe that the introduction of an opt-out system of consent is an integral element in changing our cultural attitude towards organ donation. We need to make organ donation the norm in Irish society so that it is the default position when people pass away in circumstances in which donation is a possibility. In the recent past we have proved as a nation that we can change our cultural attitudes and adapt to new ways of thinking on health issues in a short space of time. Examples include the introduction of the smoking ban in the workplace and substantially changed attitudes towards drink driving. I am not suggesting these achievements were easily attained, because significant change in attitude or policy is never easy to bring about. However, the effort required was worthwhile in helping to bring about a healthier and safer society. The introduction of opt-out consent for organ donation is another step along the road of providing the best quality health care to people in need of transplants, thereby improving the quality of their lives and the quality of life for those closest to them. These words sometimes come out too easily, but I ask Deputies to reflect on what they mean for somebody who has to attend dialysis treatment on a daily basis. The gift of a kidney means they can get back the freedom of living. It is an extraordinary gift. Heart and lung transplants are similarly life-altering events.

The introduction of an opt-out system of consent will mean that the consent of individuals to organ donation is deemed to have been given unless they have specifically opted out during their lifetime. That said, however, I am aware of the importance of respecting the feelings of the families involved, and to this end I am proposing a soft opt-out system. Such a system will allow the deceased's next-of-kin to retain an important role in the process of organ donation. I want to ensure that the system of consent we put in place will operate effectively in hospitals throughout the country in a manner that is sensitive to families who are bereaved. It would be a churlish system if it ignored the feelings of a family that has just lost a loved one. That certainly is not my intention.

I recognise that many issues need to be addressed in introducing this new system of consent. In light of this, my Department undertook a public consultation between July and September last year to seek the views of the public on the practical aspects of introducing an opt-out system of consent for organ donation. A total of 57 submissions were received, including that of the Joint Committee on Health and Children. A document summarising the views received is available on my Department's website. Many important issues were raised in the submissions. These issues formed the basis of a consultation event which I opened in Dublin Castle last November. The consultation event was organised by my Department in conjunction with the HSE's national organ donation and transplantation office, and approximately 80 key stakeholders attended. It provided an opportunity to explore more deeply the important issues that were raised in the public consultation and to consider how best to implement an opt-out system that will be most beneficial to recipients, while being mindful of the feelings of the families of donors. The event was structured in such a way as to give every opportunity to those involved to share their views and to consider how best to implement the opt-out system of organ donation in a way that addresses any concerns raised. The outcome of the public consultation process, bolstered by the outcome of the consultation event, is informing the work of my Department in drawing up legislative proposals to give effect to the introduction of an opt-out system of consent.

Changing the system of consent is only one aspect in a package of measures that are needed to increase organ donation and transplantation rates. Experience in other countries has shown that the development of an appropriate organ donation and transplantation infrastructure is necessary to have a positive effect on organ donation and transplantation rates. This is why, in the face of very difficult economic circumstances and despite reductions in staffing and financial resources, I arranged for the HSE to allocate an additional €2.9 million to organ donation and transplantation in 2014. This additional investment is all the more significant when one considers the continuing demographic and service pressures that the HSE faces this year. It is a clear demonstration of my commitment to improving organ donation and transplantation rates in Ireland. The extra investment will facilitate an increase in the levels of organ donation and transplantation, to the benefit of patients and their families. It will allow for the appointment of 19 whole-time-equivalent staff dedicated to organ donation and transplantation, including consultants, network link nurses, organ procurement officers and quality officers. The appointments will include six half-time consultant intensive care physicians and six network link nurses, who will comprise a key element of the organ donation effort in each of the hospital groups. They will work to foster a strong culture of organ donation, optimise conversion rates and champion educational strategies and training programmes that promote organ donation to health care professionals across each hospital group. These key donation personnel will have a particular focus on protecting the interests of donating families throughout the process. I am aware that reservations have been expressed about this initiative. It was never the case that it would be an either-or situation. We have to do everything in our power to improve organ donation rates and to comfort, console and counsel families who find themselves in the most difficult of circumstances, having lost a loved one, while encouraging them to allow their loved one to live on through the gift of life to another person. That is a truly consoling part of the worst life experience that most families endure.

The additional investment in 2014 will also facilitate the employment of five organ procurement co-ordinators. Currently the renal transplant co-ordinators employed at Beaumont Hospital also undertake the co-ordination of organ procurement supplementary to their core work. Apart from the fact that best practice dictates that the same people should not be involved in both donor and recipient co-ordination, this situation is not sustainable if we are to achieve the increase in donation and transplantation rates envisaged. The additional organ procurement co-ordinators will be on call on a 24-7 basis and their responsibilities will include travelling to any hospital where a potential organ donor is identified; obtaining consent from bereaved families; obtaining comprehensive donor medical and social history; supporting the donor family throughout the donation process; organising retrieval teams; and co-ordinating theatre time for organ retrieval. It must be a priority to ensure that every link in the chain from donation to transplantation adheres to the highest possible standards of quality, safety and compassion. In respect of organ donation and transplantation, this involves ensuring that those who donate organs, as well as those who receive organs, can be fully confident that the system meets the highest standards of international practice. The extra investment in 2014 will also facilitate the employment of four quality officers. It is a legislative requirement under the European Union (Quality and Safety of Human Organs Intended for Transplantation) Regulations 2012 that an effective framework for quality and safety must be established. This framework for quality and safety will ensure that the risks of transplantation are minimised and the benefits are maximised. Patient safety and quality are at the core of our health reform programme and I am on record as constantly striving for better standards in this key area. A dedicated quality manager will be appointed in each of the three transplant hospitals - the Mater, Beaumont and St Vincent's - as well as in the national organ procurement service. The appointees will establish relevant standard operating procedures, forms and reports and co-ordinate the development of quality systems for transplant services.

In the context of the introduction of an opt-out system of consent for organ donation, funding has also been provided for the establishment of a secure register of persons who do not wish to become organ donors after death. This will be provided for in the human tissue Bill, the heads of which are being drafted by my Department. In addition to the area of organ donation and transplantation, the human tissue Bill will cover a range of other issues, most likely including post-mortems, research and anatomical examination.

I am currently considering the possibility of some level of reimbursement of living donor expenses. This could have the potential to increase the number of living donors while avoiding a situation where there could be any financial incentives or benefits for potential donors.

I believe the strong tradition that exists in the blood transfusion service is one that we would like to emulate in organ donation, but there are real expenses for those involved, such as lost time from work, that we must make good.

I am committed to making every effort to increase the level of organ donation and transplantation. In 2013 a record total of 294 organ transplantations were performed in Ireland. This figure includes 38 transplants involving living kidney donors, itself a record number. I am confident that the additional resources provided in 2014, along with the envisaged legislation and the additional staff that have already been assigned to the HSE's National Organ Donation and Transplantation Office, will facilitate further significant increases in Ireland's organ donation and transplantation rates over the coming years.

I look forward to hearing the contributions from Deputies and I envisage that these will further inform the optimum way forward as we work to enhance donation and transplantation rates to the benefit of patients and their families.

I will finish by thanking the Chairman of the Oireachtas committee and the committee itself for their good work on this issue, but I cannot sit down without first thanking all those families who have allowed their loved ones' organs be donated and those brave Irish people who have given a living donation.

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