A LARGE part of Cystic Fibrosis Ireland's (CFI) work is raising money to build facilities the State doesn't provide. An inherited chronic disease, Ireland has one of the highest rates in the world. Despite this, facilities are woefully short of where they need to be.
"Our patients cannot socialise together at all because they have infections which are dangerous to other patients," chief executive Philip Watt said.
"They need specialist in-patient and out-patient facilities, and specialist air filtration systems. When we go to other countries we find we are supporting the building of basic facilities that the Department of Health hasn't built already.
"There's a little bit of complacency because the unit at St Vincent's Hospital (in Dublin) has been completed, but we're trying to raise €2.5m for a similar unit in Beaumont."
Beaumont patient Dean Archbold (25), from Dun Laoghaire, who has been on the lung transplant list for five years, said CFI "are fighting for us". Another Beaumont patient, engineering graduate Alan Doyle (26), from Tallaght, said a new unit there "would make a huge difference to my life."
Mr Watt said: "We spent almost €4m on charitable activities last year, including €2.1m on CF outpatient and inpatient building projects in four hospitals.
"As our income for 2012 was €2.1m, we have eaten deeply into our savings built up in the last few years for these projects. This was right, because these facilities are life and death to our members and there is no chance they will be provided by the Department of Health in the present environment."
Among the projects funded by the charity is an out-patients' centre in Drogheda, which cost €700,000. Just €100,000 came from the National Lottery.
Work is under way on a facility in Limerick Hospital costing €4.1m – €1.2m from CFI, and the remainder from local businessman JP McManus. Another €1.3m is being spent on an outpatient facility in Mayo Hospital, with €1m coming from CFI, €200,000 from the hospital and €100,000 from the lottery.
On top of that, €160,000 was paid to members for transplant preparation, supports and other medical needs; another €65,000 on medical research; €63,000 for equipment in the Mater Hospital; and €66,000 to fund a CF microbiologist in Tallaght Hospital. The charity's cash reserves are almost depleted, Mr Watt said, with services likely to be cut.
"It's a much tougher fundraising environment, with general fundraising down about 10pc a year. We've been fundraising for these projects over the last five years. We're down to the bone now, and it's a challenge to see how we're going to go ahead. We may have to start cutting back on services like advice, support and grants to parents. We can't sustain this. We have to fundraise €2m a year to ensure we can sustain some of the projects we want going forward and sustain the staff. Fighting cutbacks is the other bit. Key staff in multi-disciplinary teams aren't being replaced when they go on sick leave or maternity leave."
Mr Watt's salary is €95,000 a year, but he doesn't claim expenses, which amount to some €10,000 a year.
Last year, some €115,000 of its €2.1m funding came from the State.