THE federal government says it did not intend to fund an Australian Shunt Register on an ongoing basis and has refused to answer whether it would consider supporting it further.
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The response comes after long-term lobbying from Jane and Brad Coppin, of Moruya, on behalf of their daughter Darcy, 12, who has undergone repeated brain surgery for hydrocephalus.
The family launched the Dollar for Darcy campaign to raise funds for a registry to provide data on hydrocephalus surgery, which could ultimately improve the success of treatment for sufferers.
A federal Health Department spokeswoman told the Bay Post/Moruya Examiner that, in June 2013, the Australian Government provided $165,000 to the Neurosurgical Society of Australasia to establish the register.
“This funding agreement ceased in August 2014, when it was expected that alternative funding arrangements should be sought,” the spokeswoman said.
“Clinical quality registries are a useful means of monitoring implanted medical devices and impacts on patients and the Australian Government is keen to see them developed by clinicians where there is agreement that the likely benefits will outweigh the costs.”
Federal member for Eden-Monaro, Peter Hendy, said he was aware of the anxiety and risks that patients with hydrocephalus and their families experienced in the course of managing the condition.
“I made representations to the Minister on behalf of a member of our community in July last year and note that the Commonwealth made a one-off contribution of $165,000 to the Neurological Society of Australasia toward the establishment of the Australian Shunt Registry,” he said.
“This funding arrangement ended when it was expected that alternative funding arrangements should be sought.
“However, I am happy to support my constituents to lobby for continued funding.”
Bega MP and NSW Infrastructure Minister Andrew Constance last week called on the federal health department to “do the right thing” and reconsider its stance.
Mr Constance said he “100 per cent” supported the call for the registry and said it was “outrageous” that both state and national health departments had not established it.
“I don’t understand why it hasn’t happened,” Mr Constance said.
“It just seems to me that, if there’s a legitimate reason and explanation for not having one, the health departments need to outline why.”
Mr Constance said the responsibility for a national registry should rest with the federal government.
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