Joanna Gash (Gilmore, Liberal Party) Share this | Link to this | Hansard source

Marilia Pereira is Australia's first neurological nurse educator. Marilia was appointed by Parkinson's Australia following a federal funding grant to support the position for two years. The position was located in Nowra and evolved from an initiative of the Parliamentary Friends of Parkinson's group, of which I was chair when in government. I was first introduced to Parkinson's through Rod Irwin, a former diplomat, who was living in Moss Vale when that was in Gilmore. Rod has since passed away, but I will be forever grateful for his guidance on the matter. The group is a bipartisan group with members from across the political spectrum unified by their concern towards sufferers of this insidious and endemic disease.

According to Deloitte Access Economics, it is conservatively estimated that in 2011 over 64,000 Australians were living with Parkinson's; 52 per cent were male and 48 per cent were female. This equates to 283 per 100,000 of the total Australian population, or 857 per 100,000 among the over 50s. I hasten to add that at any time there are many more who are yet to be diagnosed and remain unaware that they have the disease. Based on these estimates alone, approximately one in every 350 people in Australia lives with Parkinson's. Over 80 per cent of sufferers are aged over 65 years. Given Gilmore's above-average demographic in this age group, this was one of the reasons the pilot program was established there. Not only is that figure growing, but victims of the disease are increasingly younger. In 2011 across Australia, nearly 30 new diagnoses of Parkinson's were made every day—30 a day; imagine that. During my period with the Parliamentary Friends of Parkinson's, one sufferer I met was diagnosed when she was 21.

Ms Pereira's appointment and subsequent service to Parkinson's patients has been exceptional. Measured by the sentiments of her many clients, the appointment has been an outstanding success. However, this may came to a sudden halt with the expiry of a two-year trial period. Many of Ms Pereira's clients are fearful that the funding will dry up without continued government support. So concerned are they that they went to the local press to voice their concerns. Jenny Girdlestone was first diagnosed with Parkinson's in 2007. I spoke to David, her husband and carer. In his family alone, who all live in the Shoalhaven, five near-relatives have the disease. I will just quote from our local newspaper, the South CoastRegister, who ran their story:

… she and her husband David have been through some heartbreaking experiences together, as her body and mind is slowly taken over by the insidious disease.

David Girdlestone believed Jenny was a classic example of how the neurological nurse program staffed by Marilia Pereira could save the state money and sufferers and carers heartache.

In the early stages, before the program was established in the Shoalhaven the couple spent many nights in casualty at Shoalhaven Hospital.

“My wife was clinically depressed,” Mr Girdlestone said.

“Depression is part of Parkinson’s, so Jen was in and out of the emergency department with panic attacks for quite a while.

“We were in and out of the emergency ward because we didn’t know what was happening to her.

“That was the worst period for both of us, it was really hard,” he said.

Mrs Girdlestone said she didn’t believe she would be alive today if not for Marilia.

“I have days when I say I’ve had enough, that I don’t want to go on living like this,” she said.

“It is vital that this service continues.”

This is just an example. The South Coast Register story included many other names, and the article in December produced a follow-up piece in January. The thread remains consistent. The Parkinson's nurse is a vital, productive and successful initiative. If a case ever has to be made for continuity of funding, surely this is it. But Parkinson's Australia, to their credit, are not resting on their hands, waiting for benevolence. No, they are actively pursuing voluntary donations to keep this important service going. Such is their need.

I urge the government, in the most emphatic of terms, to show compassion and understanding and to resolve to maintain funding. The statistics show that demand will only increase, not decrease. It may not get better, but at least for those who are blighted by the disease—the carers and families—life can be made just that little bit easier.

I would also like to acknowledge Bendigo Bank's many years of support towards Parkinson's. The Milton and Sussex Inlet branches pay for the upkeep of the nurse's car, allowing her to continue her good work. I hope the government soon sees fit to do the same.

The Prime Minister recently spent $66,000 of taxpayers' funds to upgrade her personal hot water system at the Lodge, which was not even solar. My point is that $66,000 is enough to fund our regional Parkinson's nurse for more than six months. The wellbeing of the hundreds of Parkinson's sufferers in Gilmore, in my mind, should not be negotiable. I urge the government to renew this funding.

I would also like to acknowledge Parkinson's Shakers groups in our electorate. The work they do by simply meeting and communicating is providing much-needed stimulation. It is about each other and about discussing new drugs that are available. (Time expired)