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".