Speaking in a debate in Dáil Éireann on services provided to Cystic Fibrosis Patients

I welcome the opportunity to speak briefly on this debate this evening. I should declare a personal interest in this subject and I have followed the issue over many years inside and outside the Oireachtas.

Firstly, it is extremely disappointing that once again the provision of dedicated facilities in St. Vincent’s has been put on the back burner. I understand that a second preferred tender has been identified and that hopefully the building will go ahead sooner rather than later. But it just seems to me that a personalised battle has to be fought every step of the way for the provision of services and facilities that should be 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. It seems that Joe Duffy has more input to the provision of services that the Minister for Health. And I have to acknowledge once again the Trojan and very competent work of Orla Tinsley, who has been to the forefront in highlighting the gaps in the service for CF patients in this country. It is unacceptable that by being born on one side of the border in this small country, your life expectancy can be reduced by up to 10 years. Why? 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 as in life expectancy terms averaging 10 years.

CF is a genetic disease and it does not go away. Up to 30 young people are right now waiting in hope of 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 4 CF transplants have been carried out in the Mater hospital, in a facility that has cost a small fortune to install, and which has been in place for many years.

Where is the Human Tissue Bill? I was told by the Taoiseach this morning that no date has yet been set for its publication. Why is it that Ireland does not have a dedicated office for 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 in the past listened endlessly to debates about CF and the need for the office of national co-ordination of transplants, which  for those on the CF waiting list must sound like they are living in a parallel universe. Has our sense of priority totally deserted us?

 The Human Tissue Bill would provide the legislation under which we could undertake the establishment of such a service and which, based on all the available evidence, 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 relatives organs for transplantation must be acknowledged, during what must be an incredibly difficult and traumatic time for them. But that generosity must be matched by the provision of the support services that are required to ensure that the optimum level of successful transplants takes place following the donation of organs. Right now that is not happening in this country and it is a crying shame that such is the case.

 A few questions Minister. Why are CF patients not being provided with the best possible health care needed for their well being.?  Why are CF 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 being compromised every single day because of the lack of suitable facilities?

Why are CF nurses not replaced as a mater of routine, when one is out on maternity leave, for example.

Why does  Limerick regional Hospital not have a paediatric physiotherapist, who would provide the very essential treatment for young children with CF. ?

 We really are behaving like a third world country when it comes to provision of services and facilities for CF 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 single day they are in shared facilities, often with patients who suffer from chest infections, who are incontinent, who through no fault of their own are a vehicle for serious bugs that are putting at risk the lives of the compromised CF 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 CF patients is not one that can be ignored or dismissed. Nor can the legislation that is needed to ensure that 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 on by a thread and for whom every day in a compromised environment, is literally putting their lives at risk.