PATIENTS DISSATISFIED with Cystic fibrosis care in the Republic are travelling as far away as Austria for treatment, it emerged at the Cystic Fibrosis Association of Ireland conference over the weekend.
One mother with a young son said that she was so concerned about cross-infection at Irish hospitals that she brought her child to Austria for treatment.
“We have property there so we bring him for two clinics a year. It is awful we have to do that, but I am not happy with services here. You just don’t want to take risks with cross-infection. I don’t want to do it but what can you do?”
She said parents of cystic fibrosis (CF) children were tired of broken promises.
The woman, who did not wish to be named, said there was a huge risk of cross-infection with every hospital visit, which is potentially life threatening to people with CF.
“You don’t know who you are sitting next to and how sick they could make your child. It is frightening.”
Due to the shortage of hospital beds in Irish hospitals many CF patients have to be admitted to hospital through AE departments in order to get access to a bed. This leaves the patients needlessly open to cross-infection, which can be very dangerous.
The Kilkenny-based mother of a 7-year-old girl who travelled to Waterford for care for her child said the situation in Ireland for CF sufferers was very grave.
“You are not supposed to be in a clinic with other CF patients because of the possibility of cross-infection. At my daughter’s appointment during the week there were four CF patients in the waiting room because the doctors were busy upstairs. You are not supposed to meet another CF patient.”
The mother, who also wished to remain anonymous, said the diagnostic process for her daughter was “a nightmare”. She said she knew her infant daughter was failing to thrive but could not figure out the root of the problem. She kept bringing her to an AE for wheezing but was sent home on numerous occasions, having been told her daughter would “grow out of it.” Eventually it came to a stage where she refused to leave a hospital until she was told what was wrong with her daughter. A helpful nurse who she was chatting to suggested CF and passed the information on to a consultant.
“It took a nurse to cop it. She was in an oxygen tent for a month she was that bad. It was very stressful. I remember clearly the frustration of the months it took them to do something. They should have known.”