SOHC 4: CF kids in Australia

In Australia, where they have the much-vaunted "single-payer" or "universal" health care, this is the situation for CF patients:

YOUNG adults with cystic fibrosis are having to share a ward with children because the Royal Adelaide Hospital is refusing to take new patients.
About 20 adults, aged 18 to 20, are still being admitted to the deteriorating medical ward of the Women's and Children's Hospital for life-saving treatment because the RAH lacks resources to care for them, patients say.

The situation has created a bed shortage in the WCH, with cystic fibrosis (CF) patients being put on waiting lists for treatment.

And patients said they would refuse to transfer to the RAH unless the State Government funded urgent improvements to the RAH – the only hospital in Adelaide able to provide specialist care to adult CF sufferers.

One specialist and up to six nurses in the RAH's S2 ward are responsible for the care of about 120 patients a year.

Pictures of the S2 ward supplied to the Sunday Mail reveal holes in the walls, ceilings and floors, and broken equipment.

One patient was so desperate for hospital care she accepted a bed last week at the RAH in a bay that had been converted into a store room, sharing it with broken beds and medical equipment.

"I was desperate. There were no beds so I took the storage room – when you are really unwell you need the rest to get better," Gloria Lancione, 23, of Wynn Vale, said.

Carolyn Collis, whose sons Kyle, 20, and Daniel, 18, have CF, said services had reached a "crisis point" with the chest clinic "vastly understaffed".

The Hillbank mother this month launched a petition, addressed to Health Minister John Hill, demanding immediate action to improve the situation at the RAH. Among concerns were:

PATIENTS having to self-administer drugs because of a lack of staff.

PATIENTS sharing the ward with people with emphysema, tuberculosis and infectious diseases.

CF patients sharing IV pumps because of a lack of equipment.

PATIENTS being pressured into home treatment to ease the strain.

Parents want another full-time CF specialist doctor at the RAH, more nurses and a wholesale makeover of the ward, Ms Collis said.

"The state of that ward is affecting their health and a lot suffer depression," she said.

"It is cold, old, dull and depressing. A new hospital in the future does not help the crisis that we are in now."

Daniel Collis, who is treated at the WCH, said: "It gets hard because I still have to get up in the morning and go to work, and sometimes I don't get any sleep for three weeks because of babies crying."

But he cannot fault the level of care compared to what older brother Kyle receives at the RAH.

More often than not Kyle chooses to administer his own drugs because of work commitments and the lack of staff at the RAH – even if it means no ongoing monitoring of his health.

"Really, the state of the RAH is shocking," Kyle said. "They are promising a new hospital in 10 years, but we've got an average lifespan of 30, I'm 21 this year, what am I going to be like at 30?"

Ms Collis met with RAH CEO Virginia Deegan, and nurses on Tuesday.

She said Ms Deegan had acknowledged improvements were needed but had said nursing numbers were adequate.

A focus group of parents and nurses will meet next month.

In an emailed statement, Mr Hill said $420,000 a year has been allocated from June 1 to set up a statewide CF service, including the recruitment of more staff.

"This service . . . will focus on the way our health system cares for people with CF, including their treatment at the WCH and the RAH, and broader issues such as support . . . in the community," he said.

"There have been major gains made in recent years in treating this disease with . . . more people with CF living into their 30s."