Unique model may pave the way for future jobs

The appointment of a movement disorder nurse in country Victoria is a breakthrough not only for Parkinson’s sufferers, but for those who have similar or associated conditions. 

Parkinson’s Disease is slowly, but unfortunately, making its impact upon the health of everyday Australians.

While most health conversations focus on the increase of cancers and the risks associated with not enough exercise, too much junk food, the effects of consuming above average levels of alcohol and the dangers of smoking, Parkinson’s has slowly crept up on us.

The facts are quite alarming – one in 350 Australians live with Parkinson’s Disease. It is Australia’s second most common neurological disease and has grown in numbers by 17 per cent over the last six years.

It is more common than prostate, bowel and many other cancers. The estimated cost of the disease for 2011–12 across Australia is $7.6 billion, and 20 per cent of Parkinson’s Disease sufferers are of working age.

That’s why the appointment of a movement disorder nurse in Victoria’s Goulburn Valley is not only a great breakthrough in recognising the seriousness of the disease but shows what can happen when interested parties collaborate.

Goulburn Valley Health, Parkinson’s Victoria and the Shepparton Parkinson’s Support Group have formed an alliance to create this historic position.

The first of its kind in Australia, the funding arrangement involves three stakeholder groups outside of government, which are joining forces to deliver the funding and conditions required to employ a full-time movement disorder nurse for the Goulburn Valley region.

The three organisations are co-funding the new position for the first two years as a pilot program and will seek government funding to continue the program after the initial term.

“The reality is that Parkinson’s Disease is on the increase across Australia,” Bhattacharya says.

“Since I have been in the Goulburn Valley area, I have been working with the Shepparton Parkinson’s Support Group to find a way of securing the services of a full-time nurse. The establishment of this position is a great breakthrough.”

Bhattacharya, who is the Goulburn Valley health divisional clinical director of medicine, said that for a long time patients with Parkinson’s and other movement disorders have been frustrated about having to travel to Melbourne for review.

“People suffering with Parkinson’s require a great deal of care in between appointments,” he says. “And it is not convenient for a lot of them to travel. Having a nurse in the vicinity of where they live will give a great deal of comfort to the sufferers and as time goes on we hope to increase the geographical spread of where the nurse, Sheree Ambrosini, can travel to.

“But we are happy that there has been the establishment of a local movement disorder clinic, coupled with the addition of a dedicated movement disorder nurse, so that those living in the Goulburn Valley with Parkinon’s Disease are offered a comprehensive and fulfilling service.”

Specialist neurological nurse Sheree Ambrosini has been in the role since May and was happy to return to her home town of Goulburn Valley, having worked with neurological patients across several Melbourne hospitals.

“This area is of great interest to me, and already in the short time I have been in this role I have been regularly receiving calls to visit patients,” Ambrosini says. “There is a lot of uncertainty with people who have the disease and they tend to get quite anxious about medications and symptoms.

“They feel assured when you can talk to them about it on the phone but visiting them in person is where you make the real difference.”

The movement disorder nurse’s role is diverse, and encompasses delivering care closer to people’s homes (in most cases in their homes), being able to attend quickly to emergency situations, educating patients and carers about Parkinson’s and providing information and insight as to what to expect, being able to provide links to valuable support services, such as speech therapy and physiotherapy, providing education to hospital and care home staff about how to care for people with Parkinson’s, serving as a liaison between the local support group and patients, assisting local GPs to care for people with Parkinson’s and reducing wait times for specialist review.

Ambrosini’s role will not only support people with Parkinson’s, but also other conditions commonly misdiagnosed as Parkinson’s, such as Progressive Supranuclear Palsy and Multiple System Atrophy.

“It is really important that people are correctly diagnosed and given the necessary medication and support,” Ambrosini says. “I think this role is very important to the community and I am hoping that after two years here that the state government will step in and fund the role permanently.

“Unfortunately, the disease is increasing in Australia and that, combined with an ageing population, will see the need for more specialist nurses such as myself required across the country.

“I hope that this breakthrough case of non-government funding will be a landmark for other areas in need of health services throughout the nation.”

Parkinson’s Victoria chief executive officer Emma Collin said this unique funding model may become a pathway for the future. “Unfortunately, with an ageing population, the Australian government is likely to find its resources even more stretched in the future,” Collin says. “The rise of Parkinson’s Disease in this country is not abating and we will see more and more Australians in need of care.

“I think when collaborations such as this come together, it is great for people with the disease and other movement disorders in the Goulburn Valley area.

“We do a lot of research into Parkinson’s Disease all over Australia, and Goulburn Valley was a key area we identified where a full-time movement disorder nurse could be of great benefit. We were happy to co-fund the position with Goulburn Valley Health and the Shepparton Parkinson’s Support Group. Hopefully, this funding model can be used in different areas in Australia for different medical needs.”

The facts

Parkinson’s is a disease of the central nervous system, which in this case, means the brain. There is a degeneration of nerve cells, or neurons, which control muscle activity, and in recent years it has been realised that a wider range of brain cells are affected causing far more than movement problems.

The cause is unknown, but theories pertain to accelerated ageing, oxidative damage, environmental toxins and genetic predisposition.

At this stage there is also no cure, however, there are many treatments available to assist in managing symptoms.

It was estimated by a Deloitte Access Economics Report, “Living with Parkinson’s Disease: Challenges and Positive Steps for the Future”, that Parkinson’s Disease cost the Australian economy approximately $775 million in 2011–12, including approximately $480 million in health system costs and $110 million in lost productivity. In addition, the estimated burden of the disease in 2011–12 is valued at $7.6 billion, in terms of lost quality of life and premature mortality for people with Parkinson’s Disease.

The stats
• 30 people are diagnosed with Parkinson’s every day
• 20 per cent of people affected are of working age
• The average person lives for about 12 years from diagnosis (although it can be a lot longer)
• Parkinson’s is more common than prostate, bowel and many other cancers
• It costs people with Parkinson’s about $12,000 a year out of their own pockets
• Every year nearly 50,000 years of healthy life are lost to the condition
• Research shows that the disease has increased by 17 per cent in the last six years while costs have risen by more than 48 per cent.

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