SUFFERERS of at least one life-threatening condition did not have to wait for the federal Budget to hear bad news.
Eurobodalla families learned this week $200,000 per year was too much to ask from either the NSW or federal government to fund a national register of shunt operations for people suffering hydrocephalus.
The notoriously unstable procedure is all too familiar to the Brown family, of Malua Bay, and the Coppin family, of Moruya.
Both Kerrianne Brown and Jane Coppin have watched life-saving shunts – designed to drain excess fluid from their daughters’ brains – fail.
They believe money spent on a registry now would reduce the millions of dollars spent each year in replacing failed shunts and the resulting collateral damage.
It was not to be.
Despite encouragement to parents from both Liberal and Labor parties in recent years, NSW Health Minister Jillian Skinner last week said ongoing funding for a registry was a federal issue.
For his part, federal Health Minister Peter Dutton late last week categorically refused to provide ongoing funding, despite honouring a commitment from the previous Labor government for a $150,000 start-up grant to the Neurosurgical Society of Australasia.
“Any further costs associated with the registry are a matter for the Society,” a federal Health Department spokesman said.
The news was “deeply disappointing” for Jane Coppin, whose daughter Darcy, 11, underwent surgery 18 months ago, and who said 70 per cent of shunts failed in the first two years “at huge expense”.
“This decision has direct long-term effects for her health,” Mrs Coppin said.
“Hydrocephalus affects one-in-500 babies and is twice as common as Down syndrome.
“We hoped data could be collected that would assist in the longer-term health benefits of people living with hydrocephalus.
“It could make such a difference.
“We have the data from the Children’s Hospital at Westmead and the annual cost (of shunt failure) is in excess of $2 million per year for that one hospital.
“This $200,000 we are asking for is a pittance.”
Mrs Brown also said the requested funds were “trifling”, compared to the cost to the government of “transporting children all over the state for emergency brain surgery”.
“We are lucky, as our child has only had emergency brain surgery twice,” she said of her daughter Zoe’s experience.
“There is one I know who just had his 21st brain surgery, not to mention the others who are having seizures and other ramifications from hydrocephalus. “I wonder what the cost is?
“There is proven evidence, from agencies such as the Cerebral Palsy Alliance, that information gathered in registries is an essential first step in identifying strategies that will provide really good outcomes for our children.”