Alexa Jefferson clocks up the kilometres in her role as just one of 33 Parkinson’s nurse specialists in Australia.
A nurse of 30 years, Alexa travels 450km from Perth to Bornholm in Western Australia, to visit and assist one of her patients, Yke, aged 58, who has complex Parkinson’s.
Yke, a self-employed plasterer who was diagnosed with Parkinson’s at 43, is now in the complex phase of the disease, which occurs about five-to-10 years post-diagnosis, where symptoms become difficult to control with just oral medicine, requiring advanced treatment.
With Alexa’s visits every two to three months, Yke’s ability to phone Alexa for urgent issues and his twice-yearly visits for check-ups at the ANRI clinic at Perth’s Sir Charles Gardener Hospital, Yke is able to make the most of his forced, early retirement – from pursing his passion for carpentry to running his rural property.
In the United Kingdom there are 310 Parkinson’s nurses and there are calls for Australia to follow suit, with a national network of community-based nurses to help improve the quality of life for more than 64,000 Australians affected by the neurodegenerative disease.
In a two-year study, researchers at the University of Sydney’s Brain and Mind Research Institute teamed with Parkinson’s Australia and Parkinson’s New South Wales to evaluate the impact of Parkinson’s nurses on their patients and carers in NSW’s Shoalhaven region.
Their research found Parkinson’s nurse specialists significantly reduced the physical and psychological burden of patients and their carers.
And research in the UK shows a single Parkinson’s nurse can save an average of $57,831 in clinical appointments each year and $105,600 in avoided hospitalisations each year.
Alexa, who has 18 patients just like Yke with complex Parkinson’s across Western Australia, said based on the UK experience, Australia needed more than 200 community-based Parkinson’s
nurses, due to greater travel distances.
Alexa said her patients are grateful to have access to a Parkinson’s nurse.
“Some of these patients don’t have the means to travel to the major cities to see Parkinson’s specialists routinely, therefore potentially missing out on receiving timely advice and follow up with regards to their treatment,” she said.
“There are a number of patients with Parkinson’s disease who are isolated and they often feel socially embarrassed and stop engaging within their community.
“The appropriate treatment, together with the support of a Parkinson’s nurse, will help to ensure they have full functional ability and sustained quality of life.”