Cystic fibrosis campaigners launch fight to get unit funds

 

CYSTIC FIBROSIS campaigners launched a hard-hitting drive yesterday to reverse the decision to delay the building of a new cystic fibrosis unit at St Vincent’s hospital in Dublin.

The Cystic Fibrosis Association’s campaign, with the catchline “Irish War Crimes”, states that people with cystic fibrosis are fighting a war against political negligence.

A campaign truck will travel the State over the next week and politicians will be canvassed locally and nationally to increase pressure on the Government to find funding for the unit.

The new facility, which would have had about 30 single rooms for CF patients, had been promised for 2010 but last week it emerged that funding would not be available until 2011 at the earliest.

Leading cystic fibrosis campaigner Orla Tinsley said many CF patients were refusing to go into hospital to have lung infections treated because of the risk of cross infection.

At any given time there were up to 30 CF patients in St Vincent’s hospital for eight single en suite rooms, Ms Tinsley said. “Twenty- five people with CF died in Ireland last year. What part of that don’t they understand?”

She said she had been “torn apart” by the news that the unit was being delayed.

“Last year a promise was made. I sat face-to-face with Minister Harney and she promised me that we would have our fully operational multi-disciplinary unit by the end of 2010.”

She said she told the Minister for Health she did not want to be looking down on her in years to come, still wondering what happened to the unit. “She said she didn’t want that either. The thing is, CF is not a death sentence. With proper treatment and inpatient care at a pivotal time when patients need treatment we can recover well from infections and we can continue living our lives, going to college, working and doing whatever we want to do,” she said.

Ms Tinsley said she was not invited back into the Minister’s office to hear about the delay in funding. “The fact that people with CF were not informed directly conveys the level of ignorance and disrespect that is going on here.”

Seán O’Kennedy, Cystic Fibrosis Association chairman, said he made no apologies for the hard-hitting campaign. “People living with CF are fighting an ongoing war against CF but unfortunately they are also fighting a war against an Irish medical system that is totally insufficient for their needs.”

He said protesting outside the Dáil was the last thing his organisation wanted to do but the total disregard shown by the Minister for Health and the HSE could not be ignored.

Ireland has the highest prevalence of cystic fibrosis in the world but the poorest resources in Europe, the association said.

Independent TD Finian McGrath said the cost of the unit had fallen by €10 million since it was first mooted, due to the economic downturn. “Four or five cents on the pint would build that centre in the morning,” he said.

Ms Tinsley’s father Brian said it was “unthinkable” that the unit would be delayed. “The services were promised over 10 years ago. These services were promised at the height of the boom and people still haven’t got them.” He said his 22-year-old daughter had not sought out this campaigning role but had found herself in a certain place at a certain time and had to do what was right.