An agreement to expand the number of dedicated cystic fibrosis (CF) units at St Vincent's hospital in Dublin should be implemented “immediately”, cystic fibrosis sufferer and campaigner Orla Tinsley has said.
Her call came after a backlog of CF patients awaiting admission to the hospital's Nutley Wing was cleared after the Cystic Fibrosis Association wrote to the Health Service Executive this week complaining patients' lives were being put in danger by a shortage of available beds.
A dedicated unit providing improved facilities for patients with CF was opened in the Nutley Wing of St Vincent's hospital in July. The improved facilities include 20 inpatient single en-suite bedrooms, along with 10 day beds.
A commitment to extend the number of beds in the Nutley Wing to 34 "must be acted upon", Ms Tinsley said today from the hospital.
"We could be world leaders in this, but we’re not. This unit has been great but it just has 20 beds instead of the 34 we always asked for,” she said. "What we really need is a clear, concise, well laid out detailed plan as to how these beds, which were promised, will be provided.”
Eight single occupancy beds provided as an interim measure in 2008 and which were taken back by the hospital once the Nutley Wing was dedicated could be used to improve capacity, Ms Tinsley said.
“We would then have 28 single en-suite beds which would greatly improve the situation, particularly coming into the winter months.”
Ireland has four times the CF rate of other EU states, and it is the most common inherited life-threatening disease, which primarily affects the lungs and digestive system. Ms Tinsley said the prospect of not having access to dedicated facilities during winter is a “frightening” prospect.
“If people with CF are not prioritised with single occupancy rooms they are in danger of cross-infection - and this could cause irreparable damage.
“CF is very particular. Each infection is different, and you don’t know the outcome until you get it."
"This agreement, which has been in place for several months, is signed by the CFA, HSE and the hospital. All of these parties are agreeing to this but there was never a clear mechanism to outline how these beds would be provided," Ms Tinsley said.
"Now we are at a place where these beds are not provided and people are suffering because of it and they will continue to suffer until, very specifically, it is outlined how these beds will be made accessible for people with CF. It has to be transparent, it has to be well-detailed and it has to be done immediately.”
Asked about a call today by Senator John Crown for an emergency discussion on the issue in the Seanad being struck out by the chair, Ms Tinsley said: "The lack of desire to tackle and engage this issue immediately confirms worst fears that people with CF are not a priority. Lack of access means increased infection, which translates to life-threatening situations. It's not good enough."
