Catryna Bilyk (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I've been contacted by the Hydrocephalus Support Association and the Neurosurgical Society of Australasia about the future of the Australasian Shunt Registry. The registry was established in 2013 and received funding from the Department of Health and Ageing, and up until now the Neurosurgical Society of Australasia has fully funded the ongoing operation of the registry. Now the NSA is unable to afford these ongoing recurrent costs, and without public funding this valuable service faces imminent suspension or closure.

The cost of maintaining the registry is around $100,000 a year. While this is a lot of money for a small organisation like the NSA, for the federal budget it is basically spare change. For this relatively small amount of funding, there is an enormous potential for the registry to improve the quality of life for hydrocephalus patients and possibly even save lives.

For those not familiar with the device, a shunt is used to treat hydrocephalus, a condition in which cerebrospinal fluid accumulates and puts pressure on the brain. Hydrocephalus can be congenital—that is, present at birth—or acquired through causes like infections, head trauma, meningitis and brain tumours, to name a few. The symptoms of the condition can be quite debilitating and include headaches, vomiting, drowsiness and even seizures. As someone who has experienced hydrocephalus because of my brain tumours in 2008, I can tell you it's not a very pleasant experience.

A shunt creates a passage through which cerebrospinal fluid can be drained to another cavity in the body. While the device itself is inexpensive, inserting a shunt requires expensive surgery, and what is particularly expensive is when the shunt fails. One hospital, the Children's Hospital at Westmead, studied the costs of shunt infection, one of the most common forms of shunt failure, and found that it cost the hospital $1.5 million annually. That's a cost of a little over $80,000 per treatment. The benefit of the registry is that it collects data on shunt procedures and shunt failures. With this data the registry can identify the factors that lead to high rates of shunt failure. For example, by recording the time between shunt insertion and failure, it can provide measurements of shunt longevity. The register can help identify which shunt components are associated with high failure rates and also whether there are issues with particular products. It can also look at the failure rates associated with particular hospitals and provide feedback on the quality of care provided.

This registry is a valuable tool for informing clinical practice and decision-making when it comes to improving the outcomes of hydrocephalus patients, and it's been highly successful in terms of participation. Ninety-nine per cent of public and private hospitals performing shunt procedures are participating in the registry, and only six per cent of patients have opted out of having their procedure listed on the registry. As a result, over 2,100 procedures have been entered into the registry. As I mentioned earlier, infections at Westmead children's hospital were found in 2013 to cost over $80,000 each to correct. If these costs are typical for shunt failure then the registry could almost pay for itself by preventing just one failure per year.

Preventing shunt failure is not only important because of the substantial costs of correcting it. As I'm sure you can imagine, any form of shunt failure can result in devastating outcomes for the patient. In some cases, it can lead to permanent disability or even death. The rate of failure for shunts listed on the registry is currently around 37 per cent. These failures don't just put a strain on our hospital resources; they have devastating health consequences for patients and their families. Given the valuable input the registry is providing on the factors leading to shunt failure, $100,000 a year is a very small price to pay to keep the registry going.

When the Hydrocephalus Support Association wrote to the Minister for Health about this issue, his department sent a response suggesting the neurological society apply for funding under the Research Data Infrastructure Initiative. This initiative was due to have projects underway in July this year, yet the first round of funding hasn't even opened for applications. So this is of little use to the Australasian Shunt Registry, which needs funding now. In their July budget update, the government announced $5.7 million funding for medical registries. I'm curious to know why these four registries were considered worthy of funding—and I don't doubt that they are—but not the shunt registry. The Australasian Shunt Registry and the hydrocephalus patients who rely on it need a funding solution and they need it now. (Time expired)