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.