What Australians Living With Parkinson’s Say They Need

This Australian study looks beyond the clinical symptoms of Parkinson’s to examine what it is actually like to seek a diagnosis, navigate the healthcare system and manage the condition over time.

Based on responses from Australians living with Parkinson’s, the researchers identified recurring gaps in access, communication, specialist knowledge and coordinated care—particularly for people living in regional and rural communities.

What the study found

Navigating a fragmented healthcare system

Participants described a system that could be difficult to understand and navigate. Access to appropriate support often depended on location, finances and the availability of health professionals with Parkinson’s-specific knowledge.

Rather than receiving a clearly coordinated pathway, some people felt responsible for bringing their own services together.

Delays in diagnosis and specialist care

Some participants experienced delayed or incorrect diagnoses, long waiting periods and difficulties accessing neurologists.

Geographical distance created another barrier. People in regional and rural communities sometimes travelled considerable distances or waited many months for specialist appointments.

A timely diagnosis matters because it can provide earlier access to treatment, education, allied health support and strategies for maintaining independence.

Parkinson’s involves much more than movement

Participants described the challenge of managing a complex and changing combination of motor and non-motor symptoms.

Parkinson’s can affect:

• Movement, balance and mobility
• Speech and swallowing
• Sleep and fatigue
• Mood and anxiety
• Thinking and memory
• Pain and other physical symptoms
• Confidence, relationships and social participation

The study reinforces why Parkinson’s care cannot focus only on tremor or medication. People may need access to neurologists, Parkinson’s nurses, physiotherapists, occupational therapists, speech pathologists, dietitians, psychologists and appropriately trained support workers.

Better information and communication

Participants reported gaps in the information provided at diagnosis and throughout the progression of Parkinson’s.

They wanted health professionals who:

• Understand the complexity of Parkinson’s
• Explain treatment options clearly
• Listen to the individual’s experiences and priorities
• Recognise that symptoms and medication responses vary
• Include the person in decisions about their care
• Communicate effectively with other members of the support team

Information needs also change over time. A newly diagnosed person may need different guidance from someone experiencing more advanced symptoms or considering complex treatments.

The need to advocate for themselves

Many participants felt they had to become their own healthcare advocate—researching Parkinson’s, requesting referrals, searching for appropriate services and repeatedly explaining their needs.

Self-advocacy can be empowering, but people should not have to fight for essential information and coordinated care while also managing a progressive neurological condition.

Peer and community support matters

Support from other people living with Parkinson’s was described as especially valuable. Peer networks provided practical knowledge, understanding, encouragement and a sense of belonging that clinical services alone could not always offer.

The findings suggest that strong community connections should be recognised as an important part of living well with Parkinson’s—not simply an optional extra.

Optimism and resilience

Despite the difficulties identified, participants also described resilience, determination and a desire to maintain quality of life.

This is an important reminder that people living with Parkinson’s are not defined only by their diagnosis. With suitable information, healthcare, relationships and practical support, people can continue to pursue meaningful goals and remain actively involved in their communities.

What Australians living with Parkinson’s are asking for

The message from participants is clear: they need care that is easier to access, better connected and built around the whole person.

This includes:

• Earlier and more informed diagnosis
• Timely access to neurologists and specialised services
• Better access in regional and rural Australia
• Coordinated multidisciplinary care
• Clear and ongoing education
• Recognition of both motor and non-motor symptoms
• Involvement in decisions about treatment and support
• Stronger peer and community networks
• Health professionals and support workers with Parkinson’s-specific training

A note about the research

The researchers analysed written responses to an optional open-ended question in a national survey. This approach provides valuable firsthand insights, but it does not necessarily represent the experience of every Australian living with Parkinson’s.

The study identifies important themes and areas for improvement rather than measuring how frequently every problem occurs across the entire Parkinson’s community.

HEAL takeaway

People living with Parkinson’s should not have to navigate a complex condition and a fragmented healthcare system alone.

Good Parkinson’s support means seeing the whole person—not only their movement symptoms. It requires knowledgeable professionals, clear communication, coordinated services, meaningful choiceful relationships and support that changes as the person’s needs change.

Most importantly, people living with Parkinson’s must be heard. Their lived experience is essential to designing services that genuinely protect independence, dignity, wellbeing and quality of life.

Read the full Australian study