Charting the course of Parkinson’s disease and referral to allied health: insights from people with Parkinson’s disease

Grant recipient: Cassandra Wong

Project title: Charting the course of Parkinson’s disease and referral to allied health: Insights from people with Parkinson’s disease

Year awarded: 2023

Grant: Seeding Grant

Grant amount: $12,000

Snapshot: Parkinson’s disease (PD) is a progressive neurological condition that significantly impacts movement, function and quality of life. While allied health interventions such as physiotherapy, occupational therapy and speech pathology are known to improve outcomes, they are often underutilised or accessed too late. This qualitative study explored when and why people with Parkinson’s disease (PwPD) are referred to allied health, and the barriers and facilitators influencing access. Eighteen PwPD  across New South Wales, including culturally and linguistically diverse (CALD) individuals, shared their experiences through interviews and disease journey mapping to provide insight into real-world care pathways. 

The findings: The study found no consistent pathway for referral to allied health, with access often occurring late and triggered by significant events such as falls or hospitalisation rather than proactive care planning. Early-stage management was largely medical, with variable levels of education provided to patients, and many participants reporting they would have preferred more information at diagnosis.

Participants identified multiple barriers to accessing allied health, including cost, long wait times, difficulty finding clinicians with neurological expertise and limited transport options. These challenges were amplified for CALD participants and those with lower health literacy, who often struggled to navigate the healthcare system or recognise the need for care.

Facilitators to access included awareness of allied health benefits, connection to support networks and higher health literacy. Physiotherapy, speech pathology and occupational therapy were the most accessed services, although care was typically fragmented rather than delivered through coordinated multidisciplinary teams.  

Benefits to the profession: This research highlights a critical gap between evidence-based recommendations and real-world practice in Parkinson’s disease care. It reinforces the need for physiotherapists and other clinicians to promote early, proactive referral to allied health services and to provide clear, accessible education from the point of diagnosis.

The findings support a shift towards integrated, multidisciplinary care models, rather than isolated, discipline-specific interventions. By addressing system-level barriers and improving referral pathways, physiotherapists can play a key role in enhancing access to timely care, reducing disability and improving quality of life for PwPD.

Importantly, the study provides actionable insights for health services and policymakers, with potential to inform referral pathways, education strategies and models of care. Improving early access to physiotherapy and other allied health services may also help delay disease progression and reduce long-term healthcare costs.  

Read about the findings of Cassandra’s study.