Cystic fibrosis and broken promises

We are writing to express our utter disappointment and heartbreak at the developing crisis regarding cystic fibrosis beds in CUH.

As the parents of a two-year-old with the condition we desperately urge the HSE via James Reilly and the management at CUH, especially Tony McNamara, to fulfil the promise of ring-fencing the agreed beds for cystic fibrosis patients.

Build4life is a voluntary charity run by parents, family and friends of people with CF and the undertaking of raising €2.3 million to renovate ward 5B in CUH was done only because the charity wanted to assure CF patients of beds in the hospital. The public should also be aware that the money raised is funding 20 isolated beds, only eight of which Build4life are asking to be ring-fenced. The others will be available for other respiratory patients and the reason Build4life agreed to fund these extra beds was because it was told there was no government funding available for the project and it would not go ahead if Bulid4life didn’t foot the entire bill. Now that the money is raised the management has broken its promise and wants the charity to sign over this money with no guarantee of CF beds. This is an outrageous situation.