Updated 14.59

THE CYSTIC FIBROSIS Association of Ireland (CFAI) has said it is “concerned” that a new unit for cystic fibrosis patients will have 40 per cent fewer beds than has been recommended by medical experts.

Work is due to be completed at the new unit at St Vincent’s Hospital in Dublin – the national referral centre for adults with cystic fibrosis – in early 2012. The building of the unit had been delayed but was given the go-ahead in October of last year. It had been expected that the unit would have 34 dedicated inpatient rooms for cystic fibrosis sufferers. The rooms would be part of a new 100-bed ward block at the hospital.

However, last night Health Minister James Reilly released a statement to RTE’s Prime Time saying that the unit would have only 20 inpatient beds and 10 outpatient beds.

“We’re a bit concerned to be honest,” CFAI chief executive Philip Watt told TheJournal.ie. He said:

Our understanding was that there were to be 34 inpatient beds at the unit. That was the advice given by our Medical and Scientific Council which is made up of consultants from all around Ireland, including the consultants at St Vincent’s Hospital. That is what is needed. We will be seeking clarification from the hospital this morning.

The statement from Minister Reilly was read out on Prime Time last night following a report by campaigner and reporter Orla Tinsley on the treatment of people with cystic fibrosis sufferers in Ireland.

A report by Dr R.M. Pollock in 2005 on conditions for people with CF in Ireland found that staffing levels for cystic fibrosis treatment was “seriously inadequate” and that the lack of segregation and isolation facilities for CF patients was “creating significant risks of cross-infection with virulent organisms”. Staffing levels have improved in the six CF units around the country since that 2005 report – Minister Reilly’s statement last night said that there had been a revenue investment of €6.78m for CF services since 2006 to enhance staffing levels”.

The provision of dedicated individual en-suite rooms like those provided for in the new block at St Vincent’s Hospital are vital to prevent CF patients, who are very vulnerable to infections, from contamination.

Independent TD Finian McGrath asked Health Minister James Reilly in the Dail on March 22, three weeks ago, if he supported “the proposed dedicated 34-bed cystic fibrosis unit at St Vincent’s Hospital, Dublin”.

Minister Reilly replied that he was “wholly committed to the completion of this project”. In the answer provided (thanks to KildareStreet.com) he did not specify the number of dedicated inpatient beds which would be provided, but neither did he correct Finian McGrath’s description of it as a “34-bed” unit.

On the same day in the Dail, Finian McGrath put another call to Taoiseach Enda Kenny, during Leaders’ Questions, for facilities for CF patients to be improved. McGrath said that the HSE and others “appear to have an issue with conceding the 34-bed unit in St Vincent’s Hospital”. He added that “340 patients use the cystic fibrosis services, and 10 per cent of them often turn up in hospitals requiring the isolated rooms”.

In response, Taoiseach Kenny said that he “shared” McGrath’s view that it was “an obscenity that a person should not have treatment provided for them based on their medical need within a reasonable time scale”. He said:

I have met brothers and sisters of people who have died from cystic fibrosis due to infection of one type or another or due to the required medical treatment and facilities not being made available to them in the way the Deputy and I would expect. I support the proper provision of services for cystic fibrosis sufferers.

A communications executive for St Vincent’s Hospital told TheJournal.ie that the hospital had told the CFAI that there would be “flexibility” in relation to the number of rooms for CF patients. He said that the numbers needing inpatient facilities goes down in the summer time.

The spokesperson confirmed that only 20 inpatient beds and 10 outpatient beds were being allocated specifically to CF patients but said:

The hospital will be flexible in meeting the needs of patients with cystic fibrosis. If the 20 inpatient and 10 outpatient beds are occupied then the hospital will make arrangements depending on the overall demand. The new ward block will also house liver transplant patients and those with cancer.

Finian McGrath told TheJournal.ie that he was “shocked and extremely annoyed” at the decision to commit to just 20 inpatient beds and 10 outpatient. He said:

I didn’t know it had been decided until I heard that Minister Reilly had released that statement last night. I have said all along that the 34 beds are needed for cystic fibrosis patients not to face the uncertainty of ending up in A&E with the risk of cross-infection. I will be looking to bring this up at the earliest opportunity and continue to fight on this issue.

Philip Watt, CEO of the CFAI, says that the association is going to be “reasonable” about the number of dedicated beds available for cystic fibrosis but he noted that there had in fact been a larger number of CF patients hospitalised last winter.

He says the association envisages that the creation of a regional CF centre structure, and the establishment of the double lung transplant system, would eventually take some pressure off St Vincent’s. He added:

On the other hand, people with CF are living longer thanks to improved care, the understanding of exercise in managing the illness and so on so in the course of time, it could be that the major deficit will be in adult services because there will be so many adults living with cystic fibrosis. Vincent’s is a national referral centre for adults.