Mary Upton (Dublin South Central, Labour)

I thank Deputy O'Sullivan for sharing her time. I welcome the opportunity to speak briefly on this debate this evening. I should declare a personal interest in this subject as I have followed the issue over many years both inside and outside the House. It is extremely disappointing that once again the provision of dedicated facilities in St. Vincent's has been put on the back burner. I hope the commitment given by the Minister this evening about the timescale for the second bidder will take place within the timeframe she has indicated. However, it seems that a personalised battle has to be fought every step of the way for the provision of services and facilities that should have been in place a long time ago. It is not good enough that CF patients, who are already fragile, should have to take to the airwaves to get recognition for their very basic rights. I acknowledge once again the commitment and very hard work of Orla Tinsley. I do not know where the CF situation would be without her commitment and her dedication. She has fought the battle for herself and for her colleagues for a long time.

It is unacceptable that by being born on one side of the Border in this small country, one's life expectancy can be reduced by up to ten years. The climate is the same, the level of skills and expertise of the various medical teams are the same but it is simply down to the provision of a service. In simple terms this means that the funding and facilities are available in one part of the country, in Northern Ireland, and not in this jurisdiction. The difference can be measured in life expectancy terms averaging ten years.

Cystic fibrosis is a genetic disease and it does not go away. Up to 30 young people are now waiting for a lung transplant as their passport to a better and longer life. They are walking a fine line between being ill enough to need a transplant and well enough to receive it. It beggars belief that only four cystic fibrosis transplants have been carried out at the Mater Hospital in a facility that has cost a small fortune to install, and which has been in place for many years. There are questions to be answered on the low level of provision of lung transplants at this unit.

Where is the human tissue Bill? I was told by the Taoiseach this morning that no date has been set for its publication. Why does Ireland not have a dedicated office of a transplant co-ordinator? There is clear evidence from other European countries, and Spain in particular where the number of transplants is substantially higher than other countries, that this is down to good co-ordination of the transplant process. We have listened endlessly to debates about cystic fibrosis and the need for the office of national co-ordination of transplants. For those on the cystic fibrosis waiting list, it must sound like they are living in a parallel universe. Has our sense of priority totally deserted us? We need that office and it would substantially alleviate the many sensitive personal and medical issues surrounding donation and transplantation of organs. The generosity and bravery of those families who decide to allow the donation of a relative's organs for transplantation must be acknowledged during what must be a traumatic time for them. That generosity must be matched by the provision of the support services required to ensure the optimum level of successful transplants take place following the donation of organs. That is not happening in this country and it is a crying shame.

Why are cystic fibrosis patients not provided with the best possible health care needed for their well being? Deputy Jan O'Sullivan indicated a number of small steps that can be taken to help. Why are cystic fibrosis patients allowed to suffer in fear of not being suitable for a transplant because of the totally unacceptable time lag before they are offered a transplant? Why is their quality of life compromised every single day because of the lack of suitable facilities?

Why are cystic fibrosis nurses not replaced as a mater of routine when, for example, one is out on maternity leave? The Limerick physiotherapy situation has already been mentioned. We are behaving like a Third World country when it comes to provision of services and facilities for cystic fibrosis patients. The time has come to put the priorities of our children and young adults ahead of trophy legislation, which is simply politically driven and has little resonance for those whose lives are put at risk every day they are in shared facilities, often with patients who suffer from chest infections, who are incontinent and who, through no fault of their own, are a vehicle for serious bugs that are putting at risk the lives of the compromised cystic fibrosis patients.

Some political promises can be broken and the consequences are not particularly significant. The promise to provide a modern, appropriate and safe environment for very vulnerable cystic fibrosis patients is not one that can be ignored or dismissed. Nor can the legislation needed to ensure transplant opportunities are optimised be sidelined and relegated to the back benches of our legislative programme. It is high time to start delivering on the promises to patients, who are often hanging by a thread, and for whom every day in a compromised environment is literally putting their lives at risk.

I do not want to be totally negative because I acknowledge the many positive developments that have taken place in the 30 years since I first became interested in this topic. We are seriously lagging behind her European and North American counterparts. It is down to the provision of facilities.

See this speech in context