CFAI 11th Hour Plea to Minister Harney

06 April 2009

At the recent Joint Oireachtas Health Committee with Minister Harney where it was revealed that the St. Vincent's CF unit was postponed until 2011 at the earliest, misleading information about the state of Cystic Fibrosis in Ireland was disclosed, which the CFAI would like to correct.  The CFAI believe that this information may have inadvertently influenced the decision and today, as an 11th hour bid before tomorrow's budget, are asking the Minister, the HSE and the Department of the Health to review their decision and reverse the postponement of the lifesaving CF unit at St Vincent's

At the meeting there was a reference to the number of in-patient beds in Toronto, which the experts, i.e. the Cystic Fibrosis Association of Ireland Medical and Scientific Council, which involves all Adult and Paediatric CF consultants throughout Ireland, say is totally irrelevant to the Irish situation, as Ireland has a much more virulent strain of CF than Canada as well as having the highest instance of Cystic Fibrosis in the world.  Also a reference was made that the focus for Ireland should be on getting people living with Cystic Fibrosis treated in their homes more, which the CFAI would like to clarify.

The Pollock Report issued in 2005 and the Cystic Fibrosis Association of Ireland Medical and Scientific Council  report, issued last Friday evening, clearly stated that for every 100 CF adults, 10 single en-suite hospital beds are required.  Centres with a high proportion of severe or complex CF will need more than 5 inpatient rooms for each 50 patients.  St. Vincent's deals with an Adult CF population of over 300 on a regular basis, therefore the experts in CF in Ireland clearly state that there should be at least 30 CF in-patient single ensuite bedrooms at the hospital, where at present there are just 8 in-patient ensuite rooms and these are only an interim measure, part of the 14 interim rooms which were promised last year.

Sean O'Kennedy, Chairman of the CFAI stated "The Statement issued last Friday evening by the Cystic Fibrosis Association of Ireland Medical and Scientific Council clearly highlights the requirements for Ireland and why the CF unit in St Vincent's as well as the regional units around the country are an urgent and lifesaving necessity." 

Regarding the issue of people with CF being treated in the home more, Sean stated "People living with CF are already being treated at home 24/7 as they spend up to 5 hours a day on treatments including physiotherapy and nebulisers.  It is a full time job just to keep well. CF patients only attend hospital as an in-patient as a last resort, when their lives are at risk."

Sean finished his statement by saying "We would ask Mary Harney, the Department of Health as well as the HSE to hear our words today and listen to the 1,130 people living in Ireland with CF, who are pleading for proper facilities.  Today as the government departments are making their final submissions, the Department of Health and the HSE are making life and death decisions for CF Patients that are based on incorrect statements which could have influenced their decision about the St. Vincent's unit. We have the will of the people behind us and have recorded over tens of thousands of texts from supporters over the weekend, who like us, are asking the Minister to "Change" her decision to postpone work on the CF Unit and to give hope to all our people living with CF, their families and loved ones in what has become their darkest hour."