Health Minister Simon Harris says he will work with Cystic Fibrosis Ireland to establish a dedicated CF inpatient unit at Dublin’s Beaumont Hospital.
He was responding to a report detailing major improvements in the lives of people with CF over the last 20 years.
The report shows that the sustained investment in better CF services and medications in recent years has made a significant difference to people living with CF.
CFI chief executive Philip Watt said the findings were in many ways remarkable and send out a strong message of hope.
“The main message is that adults with CF are living much more fulfilled and independent lives in 2017, compared with 1998,” he said.
Mr Watt said the improvements in length and quality of life are closely linked to better services such as dedicated CF hospital centres, for which his organisation had fought.
There are improved rates of double lung transplantation and, more recently, access to new groundbreaking drugs such as Kalydeco and Orkambi.
“The report shows that with sustained investment over a number of years, people with a chronic and fatal disease such as CF can lead longer and better lives,” he said.
Mr Watt said key gaps remain and pointed out that the Government had promised a dedicated CF inpatient unit in Beaumont commencing in 2017.
“There has been no progress on this commitment in the programme for government and understaffing in major CF centres remains an issue,” he said.
Mr Harris said on Twitter that it was “great” to see a report from CFI showing the huge progress that had been made for people with CF.
Great to see report from @cf_ireland showing huge progesss that has been made in Ireland for people with CF. Looking forward to working with them now on next steps: Beaumont CF Unit, Human Tissue Bill to bring in opt out for organ donation & changes to hospital parking charges pic.twitter.com/TSDUrIPqAv— Simon Harris TD (@SimonHarrisTD) April 4, 2018
“Looking forward to working with them now on next steps: Beaumont CF Unit, Human Tissue Bill to bring in opt-out for organ donation and changes to hospital parking charges,” he tweeted.
The report, entitled Independent Living and Cystic Fibrosis, is based on two surveys undertaken by CFI in 1998 and 2017. Corroborative data was also drawn from other sources such as the Cystic Fibrosis Registry of Ireland.
The report is published ahead of CFI’s 65 Roses Day, that takes place on Friday, April 13.
Funds raised help people with CF to live independently.
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