Blatant disregard for CF sufferers is reprehensible
OPINION:The news that people with cystic fibrosis cannot access single en suite rooms at Ireland’s first dedicated adult CF centre, at St Vincent’s Hospital in Dublin, is not surprising.
When I arrived seeking treatment on Tuesday and was offered a bed in a room with three other people, I had heard the news that five others were waiting for treatment at home, so I refused the offer. I arrived back home to a call offering me a cubicle in the old private hospital at St Vincent’s.
The four-month-old, 20-bed dedicated unit was always a concern to people with CF. We had always asked for 34 beds.
This number was committed to in May 2011 after an RTÉ Prime Time report I did in which the newly elected Minister for Health James Reilly declined to take part. Once the number was announced in a statement a half-hour before the programme aired, a vague contract was drawn up and approved by the CFAI, the hospital and the HSE.
It was hard to watch as officialdom rallied to convince themselves the issue was sorted. If the unit was full, additional beds would be made available and this could extend to 34.
Opposing views held by people with CF were shrugged off. We were clear. This would not work. Would they take these beds from other patients who needed them? No one wanted that. We are dealing with parties who have continually failed us. To trust them seems foolish.
An eight-bed ward for people with CF opened in 2008. It is used not for CF patients but as an acute medical unit for the emergency department. If this was handed back to CF patients, as it is near the existing unit, 28 beds could be ringfenced. There is also the revamped old private hospital reopened by St Vincent’s in February this year where we feared we would end up. I am now in one of these rooms.
The constant campaigning in a country that has the highest instance of this genetic disease in the world is exhausting, and the blatant disregard shown for us is reprehensible.
The simplest solution would have been to provide two floors for CF, with 40 cubicles. These could be pared back as needed to facilitate other patient groups. We wouldn’t need 34 all the time, but without access to them when needed, people’s lives are at risk.
Last year, around this time, I had an infection over months. My lungs bled and then one of them collapsed. Just before this happened, I was moved to a cubicle.
Until then I had been sharing with three women. One had a visitor who cursed or imitated coughing when I did an airway clearance.
I had to leave my bed for the bathroom outside the ward when I needed to clear my lungs, the bathroom used to stock wheelchairs. Going to the bathroom in the room meant circling the dying woman in the bed beside mine, continually asking her grieving relatives to move. It was inhumane.
Things got worse. I was exhausted and no one knew how things would go. I got better and I saw the new unit open and I got back to work. We had a unit, it was clean, infection-free and worry-free. Whatever else happened to my health was mostly not in my power but luckily it would never again be at the mercy of a mixed ward. We did not want to believe there could be further bureaucratic codswallop.
A meeting will not solve this issue. 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.
Orla Tinsley is a freelance journalist and campaigner for better cystic fibrosis treatment and care facilities