‘They only want to know when you aren’t well’

HOSPITAL should be a haven for Edelle Collins when her cystic fibrosis flares up. Instead, the place she should have care and comfort fills her with fear.

The 28-year-old Dubliner has been left in rooms that aren’t cleaned and has sat in dread while visitors to the bed beside her coughed and sneezed around her.

She once found another CF patient in the next bed despite the fact that people with CF are even more at risk of infection from each other. She tried to voice her concerns but usually she only gets to see her over-stretched consultant once a week.

Her hospital has one dedicated CF nurse for 60 patients, no specialist CF dietician and she says: “I have never been given access to a psychologist to talk about how I deal with having a terminal illness.”

It was only in the last year, with the help of the Cystic Fibrosis Association, that Edelle started getting regular physiotherapy.

“All I ever knew from the health services was that you went to the clinic every three or six months for a check-up and went to hospital when you got really sick. They only want to know about you when you aren’t well. Much less effort goes into maintaining your health.”