'New Government must tackle major staffing shortages in Cystic Fibrosis centres and ensure access to ground-breaking drugs' - CF Ireland
The CEO of Cystic Fibrosis Ireland has welcomed “a new period of hope” for people with cystic fibrosis but he warned that the Government must tackle major staffing shortages in CF centres and ensure access to ground-breaking drugs.
Philip Watt, Chief Executive, Cystic Fibrosis Ireland said: "Despite coming from a very low base, there has been much progress in improving cystic fibrosis care in Ireland over the past three years.”
He said Cystic Fibrosis Ireland has invested almost €7.5m in improving six cystic fibrosis centres around the country between 2014 and 2016 (at Drogheda, Cavan, Galway, Limerick, Mayo and Waterford Hospitals).
The lung transplant programme in Ireland successfully transplanted 37 people with cystic fibrosis between 2013 and 2015, he said.
He added that new ground-breaking drugs such as Kalydeco are tackling the underlying cause of cystic fibrosis (in 11 per cent of the CF population in Ireland).
"This is reflected in the increase in the median age of death of people with cystic fibrosis which has doubled since the late 1980s when it was just 13.4 years of age to 27 years of age in 2014. However, this progress and hope has to be sustained."
Launching Cystic Fibrosis Ireland's 65 Roses Day, Mr Watt said the staffing crisis in Irish hospitals must be addressed.
"Some CF centres are 20 staff short of what is required by European standards," he said.
"In relation to staffing, the HSE needs to future-proof services to ensure that staffing levels are adequate, and take into account the fact that thankfully more and more people are living with cystic fibrosis than ever before. All cystic fibrosis staff must be replaced when they resign or go on maternity or sick leave. Even where the filling of posts is agreed there is often a delay in recruiting replacements and so this needs to be factored into recruitment processes to ensure that there is no loss of service.”
“We are in a period of real hope for people with cystic fibrosis for the first time—let's not put that in jeopardy now."
He added: "There are still centres that require adequate in-patient facilities such as Beaumont Hospital in Dublin which only has seven in-patient rooms and needs 20."
Mr Watt also said there is uncertainty that the HSE will pay for an innovative new drug – Orkambi - that has the potential to impact on 50pc of the cystic fibrosis population in Ireland.
65 Roses Day takes place on Friday April 15, and people are encouraged to buy a purple rose for €2, or donate at http://www.cfireland.ie/
Members of the public can also take part in the 65 Roses Challenge by organising a fun 65-themed challenge fundraiser - ideas to be found atwww.facebook.com/cysticfibrosisireland/events, or
People can also make a €2 text donation by texting "65ROSES" to 50300 [100 per cent of a donation goes to Cystic Fibrosis Ireland across most network operators. Some operators apply VAT which means that a minimum of €1.63 will go to Cystic Fibrosis Ireland. Service Provider: LIKECHARITY. Helpline: 0766805278.]