OLYMPIC and world champion swim coach Laurie Lawrence will add his support to a call for the establishment of a national network of community-based nurses following the publishing of new research into Parkinson's disease.
The findings of the Australian-first Shoalhaven Project reveal the valuable role played by community-based nurses in supporting people living with this devastating, neurodegenerative disease.
This study reveals the crucial role nurses play in significantly improving the quality of life of more than 1-in-350 (64,000) Australians affected by this disease.
One of those 64,000 is Ian Findlay, the former Australian butterfly champion and life-long friend of Lawrence. Findlay was diagnosed with young onset Parkinson's at 40 years of age in 2004.
Lawrence is now urging the Government to fund more community-based Parkinson's nurses in support of Findlay and other sufferers.
"I coached Ian as a young athlete and I know of no one who trained harder than he did. Once he finished his competitive career, I asked Ian to become my assistant coach. We've been friends for 28 years.
"He is a true champion. Ian has tremendous courage and has overcome many obstacles - physical and mental - throughout his distinguished career. Since his diagnosis, he has changed from being an outgoing, bouncy fella to someone who is more introspective and cautious.
"He works incredibly hard to fight the symptoms of Parkinson's with assistance from his hospital-based nurse and his wife, Nicole, who has given up her career as a school teacher to care for him. Both are integral to his physical and mental wellbeing. Having access to a local, community-based nurse would further complement his support network," said Mr Lawrence.
According to Shoalhaven Project Associate Professor Simon Lewis, Director of the Parkinson's Disease Research Clinic at the University of Sydney's Brain and Mind Research Institute, Parkinson's nurse specialists are uniquely positioned to ease the burden of Parkinson's disease for patients and their carers.
However, Professor Lewis also points out the findings also have a benefit for society as a whole.
"The carer represents the biggest barrier to a patient ending up in the emergency room, or in the longer-term care of a nursing home or aged care facility. Nobody wants to be institutionalised, and improving the health of these Guardian Angels will hopefully keep patients in their own home."
Currently, aged care represents the highest health system cost in Parkinson's at $237.9 million, or 50 per cent of the total Parkinson's health cost, highlighting the potential savings to the economy by delaying patient entry to nursing homes.
According to Ms Moira Selmes, Gold Coast's first community and hospital-based Parkinson's support nurse and QLD Health Clinical Nurse Consultant at Gold Coast Hospital, the research represent an exciting step towards improving the quality of life of Queensland patients and carers living with complex Parkinson's.
"In Australia there are 33 Parkinson's nurses,1 compared to more than 300 in the UK,9 highlighting a paucity of community-oriented resources available to people living with complex Parkinson's and their carers," said Ms Selmes.
"In addition to neurologists, geriatricians and hospital-based Parkinson's nurses, a national network of community-based Parkinson's nurses would complement the existing services available and bridge the gap for the patient between the hospital and the home."
About Parkinson's disease
- Parkinson's disease is a chronic, progressive brain disorder caused by a loss of the chemical, dopamine, in the brain.
- Parkinson's affects the central nervous system, causing involuntary tremor, stiffness, slow movement and loss of balance.
- Parkinson's also results in non-movement symptoms such as depression, anxiety, disturbed sleep and bowel and bladder problems.
- Among Australians aged over 55 years, Parkinson's is more prevalent than breast cancer, colorectal, stomach, liver and pancreatic cancer
To learn more, visit Parkinson's QLD at parkinsons-qld.org.au
About the Shoalhaven Project
- The Shoalhaven Project is a government and privately funded community nursing pilot study, conducted between January 2010 and January 2012.
- Researchers at the University of Sydney's Brain & Mind Research Institute, teamed with Parkinson's Australia and Parkinson's NSW to evaluate the impact of a community-based specialist nurse - or Neurological Nurse Educator - supporting and assessing people living with Parkinson's.
- The Neurological Nurse Educator contacted and visited 201 Parkinson's patients and their carers in the Shoalhaven Region of New South Wales to assess their quality of life over a period of time.