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.