Reaction from Sean O'Kennedy, (CFAI), to Minister Harney's announcement that work with St Vincent's is to proceed

08 April 2009

We are cautiously welcoming the statement from the Minister's office that the 120 bed unit at St Vincent's Hospital, which includes the lifesaving CF Day Care Centre and 34 CF in-patient bed facility will proceed and be operational in 2011. As everyone is aware promises have been made and broken before and our young people with CF are living in fear of getting their hopes dashed once more.

We sincerely thank the Minister for her resourcefulness in finding a way to proceed with the development, but would plead with her to commence work on the development sooner rather than later.  25 young people died last year alone and we do not want to be looking at a similar figure again this year and the next.

This commitment is so important as Ireland has the highest prevalence of Cystic Fibrosis in the World and we have the most severe types of Cystic Fibrosis in the World.  Despite this Ireland have the poorest resources for Cystic Fibrosis Patients in Europe.We would also ask the Minister, the Department of Health or the HSE to clarify the situation regarding the 6 interim beds that were promised as a stop gap until the new facilities were operational.  14 were promised last March, 8 came on line in August and we are still waiting on the remaining 6.

We want our young people living with CF not to fear going into hospital which this unit will achieve for the 300 patients attending St Vincent's, but we would ask that the Minister looks to speeding up the work, not delaying it, as the sooner we have the facilities the more young people's lives will be saved.

This announcement comes at an excellent time as we plan for our National Conference in Cork at the end of this month.  We will be requesting a meeting with Minister Harney to take us through the plans and would like to take this opportunity to invite Minister Harney to the Conference where she could personally announce how the project will be brought to reality to a very relieved audience.

We also look forward to meeting the team at St Vincent's, hopefully with all of us rolling up our sleeves and planning a much brighter future for our young people with CF who attend St Vincent's.

I would also like to sincerely thank all those who helped and supported CFAI over the last week especially the public and media who responded to our theme of people first when making decisions on cutbacks.