It took the death of a friend before cystic fibrosis (CF) rights campaigner Órla Tinsley was finally able to access an appropriate hospital bed, almost a week after she first presented for treatment.
The 22-year-old journalist and author sought treatment for her own CF last Tuesday at St Vincent’s University Hospital but refused the offer of a bed in a room with three other people.
This is in light of the fact that people with CF are particularly susceptible to cross-infection.
It emerged that five others with CF had also returned home because of the unavailability of supposedly ringfenced CF beds at St Vincent’s.
Ms Tinsley was subsequently offered a cubicle in the old private hospital at St Vincent’s. Last night she tweeted that she was “finally moving to CF ward into cubicle friend died in last night”.
It is just four months since the long-promised 20-bed cystic fibrosis unit at St Vincent’s opened and an agreement reached that up to 34 beds would be available for CF patients.
Despite this agreement, patients returned home last week when it emerged the additional beds were not available. The hospital said it was dealing with some infection control issues, that made bed management more complex.
Ms Tinsley said the news that people with CF could not access single en suite rooms at Ireland’s first dedicated adult CF centre was not surprising.
Writing last week, Ms Tinsley said the “only action that will satisfy the thousands of families and friends affected by CF is a clear, detailed and public commitment on how exactly these beds will be provided”.
“No one wants a lengthy campaign. We just want our lives. But we will fight for them if that’s the required cost of equality of care in the Ireland of 2012,” Ms Tinsley said.
Ireland has the highest rate of cystic fibrosis in the world, affecting 1,200 people. It affects the lungs and digestive system in particular, leaving sufferers at the mercy of infection and frequent hospitalisation.
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