As a nurse-researcher from New South Wales (NSW), Australia, the opportunity to attend the World Parkinson Congress in Kyoto, Japan proved to be much more enriching and informative than I had anticipated. Although I have attended many professional conferences during my career as both a clinical nurse and an academic, this was my first experience of a conference where researchers, clinicians, support services, people living with Parkinson’s and carers gathered for a conference covering all aspects of Parkinson’s disease. 

Since 2017, our research team from Charles Sturt University has been engaged in research commissioned by Parkinson’s NSW (PNSW). We have focused on research that ‘makes a difference NOW for people living with Parkinsons’ disease. For our team, the emphasis has been on demonstrating the impact of specialist Parkinson’s nurses in rural and regional areas where access to neurology services is limited. The two posters we presented as part of the poster tours at the congress (‘Rural and regional Australia: The case for specialist Parkinson’s nurse services’ and ‘Cost-effectiveness of a Parkinson’s nurse specialist position in Australia: A pilot retrospective analysis’) along with our subsequent presentations attracted many inquiries from neurological nurses, health services and support groups. PNSW continues to use our findings to advocate for more specialist Parkinson’s nurses in regional NSW, and specialist Parkinson’s nurse positions have been established in Queensland as a result of this research.

As researchers, we are in a unique position to benefit people with Parkinson’s disease through our work with specialist Parkinson’s nurses, allied health practitioners, support services and Parkinson’s organisations. These partnerships have extended to engagement with the primary healthcare sector and local health districts in other regions of Australia that are exploring the initiation of further specialist Parkinsons nurse positions. An additional benefit of this research was the opportunity to interact more closely with advanced practice neurological nurses and strengthen links with the Australasian Neuroscience Nurses’ Association, particularly the Movement Disorders chapter.

Collaborative relationships with the local health district and clinicians have also provided access to economic data, enabling us to demonstrate the cost effectiveness of the specialist Parkinson’s nurse role. Our initial research indicated a need for further economic evaluation studies to clarify the total costs of Parkinson’s disease to individuals, communities and support networks. Associate Professor Marguerite Bramble, who led the initial cost-effectiveness project, is currently a member of a project team examining data from the ‘45 and Up Study’ conducted by the Sax Institute. This data will allow the team to identify the services accessed by people with Parkinson’s disease and the distances they need to travel to access these services. This data will also facilitate objective comparisons of the differences between the experience of those living with Parkinson’s disease in rural and regional communities and those in metropolitan areas. As researchers, our long-term aim is to further develop and lead projects supporting specialist nurses in rural and regional areas across New South Wales and potentially in other Australian states.

Since completing the projects reported in Kyoto, we have continued our collaborative engagement with PNSW on research designed to enhance and strengthen support group effectiveness, and optimise the phone and online services offered by the organisation. Although previous research identified tele-health and online services as effective ways to increase access for those with Parkinson’s disease in rural and regional areas, uptake by neurological and support services has been somewhat limited. Concerns have been raised that such services would be difficult for those with Parkinson’s disease to use. A survey conducted in September 2019 that sought feedback from PNSW support group leaders found greater willingness to engage with technologies such as tele-health and online services than previously identified. Here in Australia, one of the many health service responses to the COVID-19 pandemic has been to fast-track the widespread use of existing tele-health and online platforms. An unanticipated benefit from this initiative appears to be a forced and rapid upskilling of health professionals and support services around using existing technologies to maintain social distancing while continuing to provide services. Our team of researchers and clinicians is looking forward to examining ways this forced change in service delivery can be maintained to improve access for people with Parkinson’s disease in rural and regional areas. These people have long struggled with limited access to specialist neurology services, specialist Parkinson’s nursing services and broader support services.

Associate Professor Rachel Rossiter is an academic and researcher at the School of Nursing, Midwifery & Indigenous Health at Charles Sturt University, Australia. 

This research was first shared as an abstract at the WPC 2019 in Kyoto. WPC is pleased to support abstract authors by sharing their ongoing work. Digital versions of WPC abstract books can be downloaded from the past three Congresses HERE.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®