We CF patients need to focus on living
COMMENT:The battle over beds for cystic-fibrosis patients should be long over. But it’s not
An eight-year campaign for international-standard cystic fibrosis facilities in Ireland reignited this week. I watched it from my hospital bed, exhausted but filled with the kind of anger that makes rest impossible. I spent the week trying to counter arguments and spin about a building, at St Vincent’s University Hospital, in Dublin 4, that some people with CF used their last months of life fighting for.
It feels undignified to mention that while this controversy trundled on I underwent the usual inpatient hours of intravenous antibiotics, occasionally coughed up blood, and experienced the death of a dear friend from CF. But it’s relevant. The illness doesn’t stop for controversies over bed numbers; it’s part of everyday life.
Ireland has the highest instance of cystic fibrosis in the world. About 340 people with the illness attend St Vincent’s. As noted in the 2005 Pollack report, the international standard of care is to provide five beds for every 50 cystic-fibrosis patients. This means St Vincent’s needs 34 single en-suite isolation rooms for people with CF.
Why is this important? People with CF need isolated rooms while being treated in hospital as they are particularly at risk from picking up infection when unwell.
But instead of the 34 beds we campaigned for, only 20 beds in St Vincent’s are ring-fenced for cystic fibrosis, or about three per 50 patients.
An arrangement made in April 2011 by the hospital, the Cystic Fibrosis Association of Ireland, the lead consultant and HSE allowed for 20-34 beds. It was revised this year to clarify that 20 beds would be ring-fenced but that these could be “flexed up” to 34 “where possible”.
It is clear now that this agreement is not working, and people’s lives are being put at risk as they are asked to wait at home when they need treatment, or to risk picking up infection on a mixed ward.
The “where possible” rooms are not clustered together on a floor where staff are trained in CF. There is no exercise equipment in these unspecified rooms in the 100-bed building.
This week I arrived seeking treatment for infection and was offered a bed in a room with three other people. There were already five people who needed treatment waiting at home instead of taking that risk.
Following media reports on RTÉ and in The Irish Times about the situation, there was an encouraging development, of sorts. Minister for Health James Reilly said, in response to a question at a press conference, “Thirty-four beds should be there for the CF patients, and that’s what was agreed. That’s what should be there, and that’s what the HSE is talking to St Vincent’s about, in conjunction with Cystic Fibrosis Ireland.”
This is the first official public commitment to the number, although he did not specify where the extra 14 beds would be. We need them on a floor together in the new building with dedicated CF staff so this battle ends once and for all.
The chief executive of the Cystic Fibrosis Association said on radio this week that they are committed to new operational procedures, but it is not clear what these will be.
This week I found myself thinking of the women I knew who put their health on the line in the final weeks and months of their lives to write letters, take to the airwaves and speak of horrific conditions, how their rooms were used as bathrooms by other patients (who had no choice in the matter), how they could not sleep, how the threat of cross-infection was ever present.
People with CF, their families, friends and members of the public who so powerfully rallied behind this cause were promised relief from this nightmare. Thirty-four dedicated rooms would end this cycle of constant campaigning that has pervaded our adult lives. And then the next generation could just focus on living.