Government needs to ‘get the finger out’ over Beaumont CF unit
Cystic Fibrosis Ireland launches ‘65 roses day’ fundraising event in April
Alfie Dardis, age 6, from Stepaside, and his best friend, Ava Casserly, age 6, from Dundrum at the launch of Cystic Fibrosis Ireland’s 65 roses day fundraising event. Photograph: Tom Honan
The Government needs to “get the finger out” over delays to a promised new 20-bed inpatient unit for cystic fibrosis patients at Beaumont Hospital, the head of Cystic Fibrosis Ireland (CFI) has said.
Philip Watt, chief executive of CFI, was speaking ahead of the organisation’s 65 roses day fundraising event, to be held in early April.
The long-planned cystic fibrosis unit in the north Dublin hospital had been delayed due to the massive cost overruns at the new national children’s hospital, Mr Watt said.
The cost of the Beaumont unit, which was committed to under the Programme for Government, had increased from €11 million to €12 million, due to delays to date, Mr Watt said.
“So if there’s a [further] delay, it’ll go up to €13 million or €14 million, so now is the time to build it, it’s not expensive, let’s do it,” he said, adding that CFI had committed to fundraise €1 million of the cost.
Cystic fibrosis is a condition that affects the lungs of a patient, leading to respiratory problems and breathing difficulties.
The new unit had been a key promise of Minister of State with responsibility for disability services Finian McGrath, whose Dublin Bay North constituency includes Beaumont Hospital.
Mr Watt said while Mr McGrath had been a “fantastic supporter” of the organisation, “we really hope and expect him to make sure that what was promised in the Programme for Government is now honoured”, he said.
CFI’s national 65 roses day fundraising campaign will take place on April 12th. The name comes from the phrase used to teach young children how to pronounce cystic fibrosis.
The rooms for cystic fibrosis patients at Beaumont Hospital were “not fit for purpose”, Mr Watt said. “They are run down, they are overused, there’s only seven of them and we need 20 rooms,” he said.
Another long-promised commitment from Minister for Health Simon Harris to change organ donation from an opt-in to an opt-out scheme also needed to be followed through on, Mr Watt said.
His mother, Gemma Dardis, said cystic fibrosis was often an “invisible illness”, and while Alfie could run around like any other child, “unfortunately the insides tell a very different story”.
Alfie has been in Our Lady’s Children’s Hospital, Crumlin since Thursday, for a two-week inpatient stay to receive antibiotic treatment, to try to prevent lung infections common in cystic fibrosis patients.
“We probably have one admission a year, but we spend a lot of time going in and out just for general procedures, mostly to maintain his health, than to treat particular problems,” Ms Dardis said.
“He does miss school, and two weeks out of a six-year-old’s life is probably like a lifetime,” she said.
On St Patrick’s Day the family got out of the hospital to visit Bray seafront in the afternoon. “It’s one of his favourite places, he just likes to go out onto the beach and throw stones in the sea, and he would stay there all day long if you let him,” his mother said.
After the CFI event the family had to return to Crumlin hospital, where Alfie spends “90 per cent of the time inside the room”, Ms Dardis said. “The hospital do spend an awful lot of time to try to normalise that, they send teachers in, they send play therapists, it does go a long way,” she said.