NSW cystic fibrosis clinics desperate for staff to keep patients alive

Understaffed: Westmead (pictured), Royal Prince Alfred and John Hunter hospitals desperately need more staff in their cystic fibrosis clinics.

Understaffed: Westmead (pictured), Royal Prince Alfred and John Hunter hospitals desperately need more staff in their cystic fibrosis clinics.

Nobody expected Peter Oxford to live as long as he has – not him, nor his doctors and certainly not those tasked with distributing the state’s finite health resources.

One of the longest-surviving cystic fibrosis patients in NSW, Mr Oxford, 44, is among a growing number of patients who have outlasted the funding dedicated to their care.

This is what happens when a state government tears $3 billion out of the health system. 

Labor Health spokesman Walt Secord

“They said, ‘Don’t enrol him into school, he won’t live past five’,” Mr Oxford said. Then, “He won’t get to be a teenager, he won’t get to 20, he won’t get to 30.”

Advances in treatment have contributed to a 30 per cent increase in the number of adults living with cystic fibrosis in NSW over the past seven years and the life expectancy for adults is now 37.

But there are only 10 staff members employed across the three clinics who cater to their complex health needs of the state’s 520 adult cystic fibrosis sufferers.

NSW Labor announced on Thursday plans to provide $8 million over four years to fund 20 extra staff at the three clinics.

Westmead clinic director Peter Middleton warned it would need to stop accepting new referrals by February 20 unless it was funded for four extra staff.

Royal Prince Alfred needs funding equivalent to 3.5 staff and John Hunter for 4.5 staff just to reach a bare minimum.

Health spokesman Walt Secord said Labor’s funding would increase staffing to “a safe and acceptable level” and stop Westmead from shutting off new referrals.

“Unfortunately, this is what happens when a state government tears $3 billion out of the health system,” Mr Secord said.

“Patients with cystic fibrosis should receive the highest standard of care at a properly resourced adult cystic fibrosis clinic.”

Cystic Fibrosis ACT and NSW chief executive Michele Adair said extra staff would close an immediate gap, but 68 extra staff were required to comply with the national standards of care set by the Thoracic Society of Australia and New Zealand.

Cystic fibrosis suffered from being a low-profile disease without such assets as celebrity endorsements, despite being the most common fatal genetic disease in Australia, she said.

“I find it hard to believe that another critical life-sustaining service could be so grossly underfunded,” Ms Adair said.

But Health Minister Jillian Skinner said Westmead would not close to new referrals and that a review into resourcing was near completion.

“I expect that as a result of that review there will be an increase to staffing levels at the adult cystic fibrosis clinics at Westmead, RPA and John Hunter,” she said.

Meanwhile, as Westmead reaches capacity, Mr Oxford is switching his care to that clinic because he said the staffing at RPA was even more dire.

“I’ve worked all my life to stay alive,” Mr Oxford said.

“Now I’m being faced with the fact that I don’t have medical staff to keep me alive.”