Australia’s first national MND Care Guideline move closer to reality

For thousands of Australians impacted by motor neurone disease (MND), the development of the nation’s first evidence-based MND Care Guideline represents more than a major healthcare milestone. It offers hope for consistent and informed care for people living with MND and those who support them. 

Led by Professor Zachary Munn and his team at Adelaide University’s Health Evidence, Synthesis, Recommendations and Impact (HESRI) group, and supported by a $2 million FightMND Care Grant, the Project is working to address a critical gap in Australian healthcare – the absence of national, evidence-based guidance for MND care. 

For too long, clinicians, people living with MND and families across Australia have navigated complex care decisions without a consistent national framework and clear evidence-based recommendations. These guidelines aim to change that. And they are being shaped in partnership with the people most affected by the disease. 

A national collaboration shaping the future of MND care 

Now halfway through its development, the project is showing what’s possible when clinicians, researchers, carers and people living with MND work together. 

Forty-three people living with MND and carers are working alongside a panel of 20 clinicians and researchers, with over 200 people all together working on the guideline. Together, they are helping ensure the guideline reflects both the best available evidence and what it is really like to live with MND. 

This work is already making progress. 

The team are now working to develop recommendations across three key scope areas: 

• Models of care 
• Diagnosis, recognition and referral 
• Clinical assessment and care management 

So far, three recommendations have been developed and approved by the expert panel. The first group of recommendations will be submitted for approval through the NHMRC process following the consultation process. The recommendations will be formally reviewed at a national level at this stage. A second group will be submitted later in the year, with more recommendations planned for early 2027. 

The draft guideline is now also open for public consultation, giving clinicians, people living with MND, families, and the broader community an opportunity to provide feedback before final recommendations are completed. 

The project has also expanded the range of “Health Outcome Descriptors” to 34. These describe what matters most to people living with MND when it comes to care and quality of life. This helps ensure the guidelines focus not only on clinical measures, but also on the real-world priorities that people with MND and their families say make the biggest difference in daily life.

Why lived experience matters 

As recommendations move through development, approval and public consultation, the project’s Lived Experience Advisory Group continues to play a central role in decision-making. 

Their involvement helps ensure clinical evidence is always considered alongside the day-to-day realities of living with MND. 

For many participants, contributing to the project is deeply personal. 

“It never ceases to amaze me how strong and resilient the MND community is and since my diagnosis I have really wanted to contribute wherever and however I can to support these important initiatives,” shares one member. “I’m fortunate to still have my speech and I want to maximise my contribution while I still can,” says Peter Chambers, Co-Chair of the Lived Experience Advisory Group. 

“Being someone with lived experience provides a completely different perspective, especially when you see what others are going through and the complete random nature of this illness. That perspective is critical to widening the understanding of the disease and importantly opens up options for support and care.” 

The impact of lived experience voices within the panel structure has also been widely recognised. 

Chris Symonds, President of MND Tasmania and Care Guideline Panel Member, says the process has created genuine opportunities for people living with MND to influence the future of care in Australia. 

“For me it’s critical those living with MND are able to share personal experiences and insights to the other Panel members. Both Phil Camden and I are living with MND and are on the Panel. There is a lived experience group forwarding information to the Panel for consideration, and as a result, many of our insights are catered for already.” 

“Our voices are listened to and respected by the other Panel members. I feel we have the ability to represent the 2,700 people living with MND in Australia. The opportunity to be involved in Australia’s first MND Guideline is an honour.”

Building for long-term impact 

While public consultation is underway for the first recommendations, the project team is progressing implementation and evaluation planning to help ensure the guideline leads to measurable improvements in care. 

Current activities include: 

• Developing quality indicators to assess if recommendations are taken up and used by clinicians or care providers.  
• Planning a baseline evaluation study to better understand current care practices 
• Exploring partnerships for future implementation work to ensure recommendations are used in the real world 
• Investigating opportunities for a national audit process to understand the current state of MND care in Australia.  

The team is also preparing to transition the guideline into a “living guideline” model, allowing recommendations to evolve as new evidence emerges and changes to healthcare and medical policy changes.  

Dr Steve Vucic, Neurologist and Care Guideline Panel Co-Chair, says the project has the potential to significantly improve MND care across Australia. 

“This project will be transformative for the management of people living with MND/ALS and their carers.”

Grab your Digital Beanie and help support MND research 

This progress in Australia’s first MND Care Guideline shows what is possible when research, lived experience and community support come together to drive real change. 

But the fight against MND is far from over. Research remains our strongest weapon against the “Beast” that is MND, and continued support is what keeps it moving forward. 

This Big Freeze 12, we’re asking Australians to make a simple but powerful choice. The choice to FIGHT. 

The Digital Beanie is a new way to donate in the fight against MND. You can personalise it, download it, and share it on your socials; helping spread awareness wherever you are. By choosing a Digital Beanie you’re making a difference in the fight against the Beast. 

Every Digital Beanie purchased is a donation to FightMND, helping fund vital research and care programs. All purchases are tax deductible and go directly towards powering the next generation of breakthroughs. 

You’ve got a phone. Use it. Donate by grabbing your Digital Beanie at bigfreeze.com.au