Ring-fence those CF beds, please

I am writing to express huge disappointment with regard to the current dispute over the allocation of beds for Cystic Fibrosis sufferers in the adult ward of the Cork University Hospital.

I am the parent of a three-year-old boy with Cystic Fibrosis, living in Cork. My son, Fíonn, was diagnosed at eight weeks old, forcing me into the challenging reality of caring for a tiny baby with a progressive illness. My family and I have spent the first three years of his life fighting a never-ending battle with his inability to gain weight naturally. We gave up this battle recently and with great sadness, agreed to have a feeding tube inserted, in order for him to receive sufficient calories to keep his lungs healthy and fight off dangerous and life-threatening infection.

From the age of eight weeks, Fíonn has attended hospital every second week. The majority of these visits have been to the day unit of the children’s ward. We have no choice but to expose him to a waiting area with sick children, with a ward close by for day procedures, and of course the constant threat and imminent dangers of coming into contact with other CF patients. We must pass through the main hospital, sharing a lift with sick and contagious patients, then walk through the entire children’s in-patient unit. Evidently, each trip to CUH puts his health in jeopardy and ultimately his quality of life at risk.

The week Fíonn was diagnosed, we learned of the poor conditions for CF patients in CUH but were advised to contact Build4Life — a 100% voluntary charity driven by friends and family of people with CF, who had collected money to improve facilities for adult patients. It has raised €2.3 million, towards reducing the chances of dangerous cross-infection among CF patients, and ultimately leading them towards enjoying longer and healthier lives.

My husband attended the first meeting of Build4Life4kids during the week of Fíonn’s diagnosis. It became clear that if we wanted to help our son stay healthy, then we too, would join the other families and help raise the money needed.

It is with heavy heart and tears in my eyes that I reflect on the current situation in CUH. It is a complete disgrace that CF sufferers are being let down by a flawed health system which shows no remorse or respect for those who fundraised and gave generously in good faith. I worry at the state of care for adults with CF in the country and am filled with complete dread and fear of what potential dangers lie ahead for my son.

I urge the HSE, CUH management, and Health Minister James Reilly to please, please give what was promised to the people living with Cystic Fibrosis and deliver what was agreed.

Ring-fence eight of the 20 beds for Cystic Fibrosis and help the patients fighting their illness do so without the added worry of cross infection. It is the very least that they deserve.

Aimee Flannery

Macroom

Co Cork