Shoalhaven's– and the state’s – only dedicated Parkinson’s disease nurse position is again fighting for funds.
Neurological nurse Marilia Pereira spoke at NSW Parliament House on Wednesday in the hope of educating politicians about her role and winning funding.
Mrs Pereira came to Nowra in 2010 for a trial program to help Parkinson’s sufferers on the South Coast. The trial was highly successful.
However, despite the success, the nurse position’s funding was discontinued and it has struggled for funding since.
Parkinson’s NSW chief executive officer Miriam Dixon also presented at parliament.
She pointed out the sobering statistics of the disease in Australia.
She said each day 30 Australians are diagnosed with Parkinson’s disease. “Basically we have to go back to square one on this position. It’s very distressing and frustrating,” she said.
“We’ve got research to show this improves the quality of life of people living with Parkinson’s.
“It doesn’t make any sense, we can show it works.
“In other states they have found the money to fund nurses.
“We will make representations to the state government again, but I think are going to have to look federally,” she said.
Ms Dixon said the number of Australians with the disease was expected to increase by 80 per cent in the next 20 years.
There are 80,000 Australians living with the disease. The impact of Parkinson’s disease on the Australian economy is $8 billion per year.
“Neurological nurses have an intricate understanding of what support Parkinson’s patients need and act as a go-between to support the carer, patient and specialists when it comes to daily living,” Ms Dixon said.
“This is a vital role in the lives of people with Parkinson’s and yet Australia falls far behind the UK, where there are 300 neurological nurses on standby to work directly with patients.
“Australia has only a handful and NSW has only one neurological nurse educator.”