Nenagh man’s concern over CF care

A Nenagh man who attended St Vincent’s University Hospital in Dublin for treatment as a cystic fibrosis patient has voiced criticism of his experience on the CF ward.

Dominic Murphy (42) spent weeks or even months at a time on the ward dedicated for CF patients for nearly 30 years. He said that in recent years he noticed the ward being used for patients with health issues other than cystic fibrosis, and that often many of the 20 beds in the ward were occupied by patients that did not have CF.

This, Dominic said, delayed care to CF patients, who - as recently happened in his case - often had to wait for a bed to become available in a ward that was not being used for its originally intended purpose. He told of recently spending seven weeks on the ward, when he was one of only four CF patients accommodated there.

DANGER OF INFECTION

One of his key concerns was an increased risk of infection spreading on the ward, Dominic explaining how easy it is for someone with cystic fibrosis to pick up a chest infection and how harmful this could be to them. He outlined the need to treat CF patients in isolation so that they are not exposed to infection.

“Why else is there a cystic fibrosis unit?” he asked. “The reason is for not picking up a dangerous infection.”

Dominic described the often lonely existence in the hospital, spending weeks or months in a “box room”, patients passing the time on their mobile phones, laptops or video game consoles. He said there was counselling support available but there was a two-week waiting list for it. He was also critical of the food served in the hospital, saying it did not meet the specific dietary requirements of people living with CF.

While he wanted to praise the work of the consultants and nurses at St Vincent’s, Dominic said new practices introduced at the hospital made an already difficult experience all the more challenging. He recently secured a transfer to the CF ward at University Hospital Limerick, though Dominic said he may need to transfer to Cork in order to continue with his regular treatment.

CF IN ART

Having lived with the condition all his life, Dominic has tried to raise greater general awareness of a largely misunderstood disease that affects around 1,400 children and adults in this country. Sometimes referred to as the ‘Octopus Illness’ because of the many problems it presents, CF primarily affects the lungs and digestive system but can also manifest in diabetes, kidney failure and painful spinal/postural problems.

Apart altogether from that, Dominic regards mental ill-health as a major factor for people living with CF. He mentioned common symptoms of ADHD, depression, anxiety, anger and stress.

He believes more should be done to raise awareness about cystic fibrosis in Ireland and has done much himself in campaigning towards that end. He recently staged exhibitions at Nenagh Library and Nenagh Arts Centre of sketches and paintings inspired by his own hospital treatment.

Dominic has referred his concerns about St Vincent’s to Cystic Fibrosis Ireland and said he would like to see local TDs becoming involved.

St Vincent’s was asked to comment on the matter but did not respond. A spokesperson for Cystic Fibrosis Ireland said the advocacy group does not have any information on the matter and no comment to make.