Parkinson's nurses in short supply

By Josh Jennings

July 18, 2015

Parkinson's disease nurse Mary Jones says she fosters long-term relationships with many of her patients, given the number that live with Parkinson's for many decades. The duration of these relationships significantly enhances the satisfaction she derives from Parkinson's nursing too, she adds.

"To see people come in, have their appendix out and go home is terribly rewarding but it's not me," says Jones.

"I love the long-term relationships and being part of people's lives.

"It's a really chronic condition you share a life with."

Jones, a Parkinson's nurse specialist, works in private practice alongside a neurologist and plays a significant role in reducing the physical and psychological burden encountered by people who live with Parkinson's.

She says diagnosis is one of the most critical stages of the disease, citing research indicating that the way the diagnosis is presented to patients significantly affects the progression of the disease.

"It's not a nice diagnosis to get," says Jones. "People can be fairly shocked ...

"A lot of support goes on in the early stages and then right through the condition."

Jones began in private practice in 2009. Some of the main roles she's had during her career include nine years in an orthopaedic nursing role at the Alfred Hospital and a decade co-ordinating the movement disorders program at Eastern Health.

Presently, according to Parkinson's Victoria, there are very few Victorian Parkinson's nurses available for the 27,000 Victorians living with Parkinson's.

"We don't have an education system," Jones says of Parkinson's nursing. "The role isn't suited to that of a nurse practitioner because we don't want to prescribe medication but we do want to stand alone as highly specialised nurses looking after a very complex condition.

"Largely it's going to be self-taught and taught by your peers."

Next month, Parkinson's Victoria is presenting A Walk in the Park, an Australia-wide event staged to improve the quality of life for those living with Parkinson's. Jones, a regular participant in the event and former board member of Parkinson's Victoria, says she has become an active speaker on Parkinson's education as her career has developed. She delivers lectures for support groups and organisations such as Parkinson's Victoria and St Vincent's Hospital.

"A good outcome for me in the next year would be recognition of Parkinson's as a specialty," she says.

"At the moment, any patient I see has to be seen by the doctor as well, because we're not funded. Patients will ring up and say, 'I only need to see Mary'. But there's no way we can do it currently."

A Walk in the Park takes place on August 30. www.parkinsonswalk.com.au

The story Parkinson's nurses in short supply first appeared on The Sydney Morning Herald.

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