Cystic Fibrosis row: Hospital visits are part of his life

Most kids bat off minor bugs fairly effortlessly but not Fíonn Flannery O’Riordan.

His less-than-robust immune system make trips to hospital a nightmare — mum Aimee Flannery is acutely aware of the threat to his health once he steps over the threshold at Cork University Hospital.

Diagnosed with cystic fibrosis (CF) at just eight weeks old, regular hospital visits are part of his life.

“Fíonn attends hospital every second week,” says Aimee, from Macroom, Co Cork. “The majority of those visits have been to the day unit. We have no choice but to expose him to a waiting area with sick children.”

Aimee’s stress intensifies as they pass through the main hospital, sharing a lift with contagious patients, before walking through the children’s ward. In the day unit, Fíonn, 3, inevitably comes in contact with other CF patients, increasing the chances of getting a severe respiratory infection.

“Each visit to CUH puts his health in jeopardy and ultimately his quality of life,” says Aimee.

The week Fíonn was diagnosed, Aimee heard about the CF charity Build4Life and its drive to improve conditions for CF patients at CUH. It gave her hope that by the time her son reached adulthood, the hospital would have a state-of-the-art respiratory ward with a number of single rooms ringfenced for CF patients, reducing the chances of dangerous cross-infection, she says.

Her husband, William O’Riordan, attended the first meeting of Build4Lifekids in the week of Fíonn’s diagnosis, and Aimee says it was clear that, if they wanted their son to stay healthy, they needed to join other families to raise funds for improved facilities at CUH. The efforts of these families and the drive of Build4Life founder Joe Browne, whose son Pádraig has CF, helped raise €2.3m to fund a new respiratory ward with, as they believed, ringfenced CF beds.

Aimee says it is “with heavy heart” that she reflects on the situation at CUH — where management is now offering “priority access” to CF patients, but not ringfenced beds.

“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,” says Aimee.

She worries constantly about the “state of care” for adults with CF here, where the incidence is almost four times the average rate in other European countries. While CF is generally mild in childhood, the disease becomes more severe in adulthood and the need for inpatient care increases.

“I am filled with complete dread and fear of what potential dangers lie ahead for my son,” says Aimee.

She wants CUH to deliver on the ringfenced beds and wants Health Minister James Reilly to intervene if no agreement is forthcoming locally.

“The beds need to be ringfenced to help patients fighting their illness to do so without the added worry of cross infection,” she says.

“It is the very least that they deserve.”