Specialist nurse-led models of care are crucial to improving treatment outcomes for people with Parkinson’s Disease living in rural and regional areas, however myriad barriers mean the numbers of community-based neurological nurse numbers are currently too few.

“In Australia, distribution of specialist neurological services is uneven, with 93% of neurologist based in major cities,” says Association Professor of Nursing, Rachel Rossiter.

“It is important to recognize that optimal medical management and treatment of PD requires access to a movement disorders neurological consultant. 

“Health related quality of life has been identified as worse in rural and regional areas for all members of these communities.

“However, for those living with PD early diagnosis is markedly reduced where access to specialist services is limited.

“Management of PD has been shown to be poorer than that of people living in urban areas. 

“Access to specialist physiotherapy, speech therapy, occupational therapy and specialist nursing services with the expertise to support people living with PD is extremely limited and often not available at all.”

Although sophisticated technological interventions are constantly developing and readily available in large centres, these are not as easily accessed for those in remote regions. 

“Even when the person travels to Sydney for example, to access such interventions, the ongoing management and problem-solving when there are difficulties require a return to the major centre and often results in increased hospitalisation.”

A nurse researcher and academic employed at Charles Sturt University, Professor Rossiter was approached to work with Parkinson’s NSW on a project to help identify the gaps in regional care.

“The focus of many of my academic and research endeavours over recent years has been to build nursing capacity for advanced practice to address the many gaps in healthcare delivery, thus this topic immediately interested me. 

Some of my earlier clinical experience in an advanced practice role involved working closely with a community support organisation focused on little-known auto-immune conditions.

“I thus had personal experience of the ways in which a specialist nurse can positively influence outcomes for people with chronic conditions and markedly improve quality of life.”

The goal of the project is to see more specialist Parkinson nurses available to people with Parkinson’s disease and their families living in rural and regional areas.
“Access to services remains limited in many regions. 
“When combined with the access challenges related to the complexity of the Australian health care services, carers and family members express extreme frustration as they attempt to obtain access to basic support services.”

In late 2017, the collaborative arrangement was developed between the Charles Sturt University research team, nursing clinicians from the Mid North Coast Local Health District (MNLCHD) and Parkinson’s NSW.

Parkinson’s NSW have funded a three-stage project to provide evidence to support their advocacy measures. 

Key findings of the first stage include:

• Nurse-led management strategies minimising the impact of disease progression and maximising QoL will contain acute and residential care costs.
• Business case for Parkinson’s Specialist Nurses must include measures of sustainability, equity of access and cost effectiveness.
• Major outcome measures using a prevalence rate model are direct health system costs, loss of productivity, informal care costs, other financial costs and burden of disease.
• Largest costs: acute care and nursing home costs. Indirect costs: lost productivity.
• Major drivers of increased costs: disease progression, deteriorating motor, cognitive and psychological capacity.

Stage two looked at Evaluating the impact of two specialist Parkinson’s disease nurse positions in regional New South Wales.

For a Parkinson’s Specialist Nurse to be effective, the research found that the position must be embedded in the public health system, enable flexibility to work across health care settings and engage with community support organisations such as Parkinson’s NSW, support the people living with Parkinson‘s across the entire disease continuum.

While the project still has a way to go, Professor Rossiter says there’s no doubt there’s simply not enough access specalised nurses in rural and remote areas.

“No, certainly not enough access, this is why Parkinson’s NSW has commissioned this research to try and address this very large deficit in effective care.”

A great place to start for nurses wishing to improve the quality of care that they provide for people with Parkinson’s disease is to join the Australasian Neuroscience Nurses Association and become a member of the Movement Disorders Chapter.

A free to access and use Parkinson’s disease Self-Directed Learning Package for Nursing Staff is available, along with a 6 credit point post-graduate unit through the Australian College of Nursing Parkinson’s Care Course.

“It is especially difficult to find nurses with the breadth and depth of experience and the post-graduate qualifications who are based in rural and regional areas or prepared to move to such areas.

“The Parkinson’s Clinical Nurse Consultant in Coffs Harbour described his role in a nurse-led model, as the ‘glue in the team’ enabling the team to work effectively in providing patient-centred care right across the continuum of care.

“We are in the process of working with Parkinson’s NSW to identify the next project that will serve to improve care and services for people with Parkinson’s disease in our communities.

“I believe this research is a great example of how collaborative engagement between academic nursing researchers, an economist, clinicians, community members and a not-for-profit organisation like Parkinson’s NSW can work together to improve health care for an underserved section of our community.”