Irish cystic fibrosis sufferers receive less care and die younger

PEOPLE with cystic fibrosis (CF) in Ireland receive less care and die younger than in almost any other country in the developed world.

The average age of death for a patient with the chronic lung disease here has been 21 for the past five years compared to the late 20s for Western Europe as a whole, and 33-34 for the United States and Australia.

The Cystic Fibrosis Association of Ireland (CFAI) yesterday held an open day to urge TDs and senators to sit up and take notice of the situation which, they said, demanded urgent attention.

CFAI chief executive Godfrey Fletcher said he had been criticised for drawing attention to the statistics because they upset patients and their loved ones but he said he had to be blunt with the truth.

“Yes they are alarming, yes they cause distress to our families. But we cannot sit idly by and ignore these appalling facts.”

Dr Charles Gallagher, the sole CF consultant for the National Cystic Fibrosis Centre in St Vincent’s Hospital in Dublin, said services for CF patients were at a dangerously poor level.

He backed the findings of an independent review of services published earlier this year which warned that the lack of isolation wards, specialist staff and proper hygiene in hospitals treating CF patients left them open to preventable infections.

Dr Gallagher said it was ironic that the first lung transplant had been carried out in Ireland in recent months when basic day-to-day needs of patients were not met.

The independent review found that Ireland had the equivalent of just 3.3 specialist consultants looking after the country’s 1,100 CF patients when there should be 29. There were 40 medical and therapeutic staff in total caring for CF patients when 170 were needed.

The gaps were all the more disturbing given that Ireland has the highest known rate of CF in the world with one in 1,600 babies affected.

The Health Service Executive set up a working group to examine the recommendations of the review and granted St Vincent’s an extra annual grant of €300,000 for the national centre, although it has asked for €8 million.

CFAI chairwoman Mary Lane Heneghan said the members were frustrated with the rate of progress. “Every day that goes by exposes our CF members to conditions that are doing nothing to extend their life and in some cases are seriously threatening their life.”