Western New South Wales Primary Health Network Movement Disorder Nurse Specialist pilot program

Background
The Western NSW Primary Healthcare Network Movement Disorder Nurse Specialist pilot program commenced in late in 2019. In the almost 5 years since this pilot program was commenced, multiple factors have impacted upon the program, these have been reported in detail in the Realist Evaluation completed in August, 2023. This report is designed to add to the 2023 Realist Evaluation and includes further data collected from two sites where the MDNS role remains active.
Qualitative Descriptive Study
The aim of this study was to undertake a further examination of two Movement Disorder Nurse Specialist (MDNS) positions established as part of the larger Movement Disorder Nurse Specialist Pilot project that commenced in late 2019. The study utilised an over-arching case-study design. Two sites where the MDNS role remains active were sampled. A qualitative descriptive research approach was taken to data collection, analysis and interpretation of the data.
Interpreting the Findings
In the case study site (Grenfell) with a population of 3,649 located in an Outer Regional Area (MMM5), the MDNS has one-day/week allocated to the role. This nurse remains active and has developed creative approaches to utilising the knowledge and skills learned during the education component of the MDNS Pilot. In addition to conducting individual assessments and referrals, the nurse conducts two group programs, one a Men’s Exercise Group and the other a Woman’s Dance group. Participants from both groups emphasised the importance of being part of locally delivered group activities. Benefits derived from getting out of the house, socialising, and sharing experiences with other members of the community, some of whom have Parkinson’s disease while the remainder are living with a range of diverse chronic health challenges limiting their mobility and physical functioning. They further identified the importance they attached to nurse’s professional expertise combined with her status as a trusted ‘local’. These factors are consistent with rurally focused research that has identified the importance of activities that are located close to home, accessible for those with decreased mobility, suited to the person’s interests, health conditions and budget.
In the second case study site (Dubbo) with a population of 71,666 located in an Inner Regional Area (MMM3), the MDNS role incorporates a range of activities, engaging with both clinicians and people with Parkinson’s disease and their carers in inpatient, outpatient and community settings. Although this location has a major referral facility for acute care services, access to specialist neurologists is extremely limited, as is access to allied health professionals. Participants identified the MDNS role as invaluable, while noting concerns about sustainability, ongoing funding and capacity to meet the needs of the region.
Both nurses described the significant challenges encountered in utilising the knowledge and skills they had obtained from their involvement in the MDNS Pilot program and identified organisational factors that contributed to these challenges.
Reflections
The data from this small study are consistent with well-documented inequities in access to specialist neurological services experienced by rurally located people with Parkinson’s disease and their carers and the need to expand the neurology support workforce.
Challenges arising from poorly integrated care and organisational factors, including roles not embedded as part of the ongoing staffing complement, insecure funding, lack of succession planning and systems issues were identified for both sites.
The MDNS Pilot program provided clinically relevant education designed to enhance the delivery of quality healthcare for people with movement disorders. However, unless these nurses are able to utilise their knowledge and skills and work to their full scope of practice, the provision of focused education programs is unlikely to deliver the anticipated improvements in healthcare delivery.
While there are ‘pockets of excellence’ in a few regional areas, the organisational and funding barriers to state-wide change serve to reinforce the need for a nationally coordinated approach to Parkinson’s disease in Australia.
The 2022 World Health Organisation Technical Brief and the recently announced 2024 funding to the National Parkinson’s Alliance to develop Australia’s First National Parkinson’s Action Plan both point to the importance of upskilling primary health care clinicians as a key action to improve access to evidence-based care both in metropolitan and regional, rural and remote Australia.
Given that Parkinson’s disease is a progressive neurodegenerative condition, integrated care across the continuum of the disease trajectory is essential. This must include access to timely diagnosis, management with both pharmacological and non-pharmacological treatments, rehabilitation services and palliative care services.
Recommendations
These recommendations are informed by the findings from this additional study, the 2023 Realist Evaluation, relevant research, the World Health Organisation Technical Brief and the activity underway currently to develop Australia’s First National Parkinson’s Action Plan.
•Given the imperative to upskill primary health care clinicians in recognizing, responding too and managing Parkinson’s disease and other movement disorders, consideration should be given to consulting with the Australian Primary Healthcare Nurses Association (APNA) to develop a Parkinson’s Disease/Movement Disorder on-line training module.
–This organisation has a nation-wide reach and is experienced in delivering on-line training for primary health care nurses .
–This would be an invaluable addition to the building capacity programs delivered by APNA and ensure primary healthcare focused care for people with Parkinson’s disease is accessible to nurses nationally.
•For Primary Healthcare Networks covering regional, rural and remote areas of Australia, it is recommended that attention be given to:
–Facilitating access to education programs for primary healthcare nurses and allied health professionals to ensure more extensive knowledge of movement disorders
–Developing health pathways to provide ready access to up-to-date evidence based information for general practitioners
–Recognise the isolation experienced by individual clinicians where services for people with conditions such as Parkinson’s disease are delivered by one person
–Ensure contingency and succession plans are in place to enable continuity of service delivery