The Taoiseach and the Minister for Health admitted to the Cystic Fibrosis Association of Ireland (CFAI) four months ago that facilities for sufferers were "far from ideal", its chief executive has said.
Godfrey Fletcher said yesterday that a CFAI delegation had met Bertie Ahern, Mary Harney and HSE chief executive Brendan Drumm on September 5th, when the CFAI was promised that dedicated facilities for cystic fibrosis (CF) patients would be prioritised.
However, the HSE said yesterday it would be at least two years before the most urgently-needed facilities at St Vincent's hospital, Dublin are available.
Mr Fletcher said that the Government's commitment to provide 80 additional specialist staff in 2006 and 2007 had almost been met but the critical issue remained the provision of isolation facilities, especially at St Vincent's. "The commitment appears to be there but our patient base can only look at what is signed and sealed on paper. We are tired of listening to veiled plans," said Mr Fletcher.
The HSE said that St Vincent's had a plan to provide 120 beds in single en-suite accommodation. Some 34 are expected to be dedicated to cystic fibrosis patients, a move that would help prevent cross-infection.
Mr Fletcher's comments came in the midst of a renewed debate about the appalling services for cystic fibrosis patients in the State, who have as a result a shorter life expectancy than patients in many other countries.
Fine Gael's health spokesman Dr James Reilly also argued that the lack of isolation facilities contributed to Irish cystic fibrosis sufferers dying 10 years younger than their counterparts in the UK.
"Because of this CF patients are exposed to cross-infection which shortens their lives. At the same time many patients are exposed to entirely unacceptable conditions as has been bravely described by young CF sufferers on national radio and in the national papers in recent times," said Dr Reilly.
An Independent TD currently supporting the Government said he may "walk" if a decision is not made this year to dedicate a significant number of beds at a Dublin hospital for cystic fibrosis patients. Finian McGrath said he was insisting that 34 beds at St Vincent's should be set aside for them and that while the new development was under construction at St Vincent's the Minister for Health would have to come up with "an emergency plan" to ease their current plight. "I have put a few private proposals to Mary Harney . . . if needs be, empty beds at the Beacon private hospital should be used as a stopgap measure," he said.
Orla Tinsley (20), who has cystic fibrosis and who reignited the current debate with an opinion piece in The Irish Timeslast week, said yesterday a dedicated unit was planned for St Vincent's more than 12 years ago, but it had still not materialised.
"I find it very hard to understand why we haven't got it yet as people are dying," she said.
She said she has a chest infection and needs to be admitted to St Vincent's to receive intravenous antibiotics but there are no beds available.
"I've been advised to go to A&E but that would be detrimental . . . but I may have to go tomorrow. I could do lung damage by not treating my infection but I'm open to cross-infection in A&E. It's a Catch-22 situation," she said.
She said using beds at the Beacon would be a good interim measure but not a long-term solution as cystic fibrosis patients needed to be treated by specially trained staff who had experience in treating complications of the disease such as diabetes.