Transforming MND Care: Dr Karen Hutchinson’s mission to improve MND Care
Imagine facing a terminal illness and trying to navigate a maze of doctors, hospitals and services. Sometimes not knowing where to turn next. This is the reality for many Australians living with motor neurone disease (MND). But Dr Karen Hutchinson and her team at UNSW are working to make sure no one faces it alone.
Care Coordination and why It matters
Karen’s project, Optimising the impact of the MND care coordinator in the Australian context, investigates how care coordinators help people with MND and their families access the support they need. Evidence shows these professionals can bridge gaps in services, guide people through complex healthcare systems and provide a consistent point of contact. Yet access to care coordinators is uneven across Australia, and little is known about how the role works in different regions.
“This project investigates the role of care coordinators in supporting equitable, person- and family-centred care for people with MND across Australia,” she explains. “By mapping the current care landscape, improving understanding of the current role and responsibilities of MND care coordinators, and exploring experiences of people with MND, this project aims to highlight the value of care coordination and inform more consistent, equitable policy and service design.”
What the Project Will Achieve
For someone living with MND, a single phone call, appointment, or referral can feel overwhelming. Karen’s project aims to change that by turning care coordination into a seamless, reliable support system. Using a co-design approach, the research team, which includes people with lived experiences of MND, works closely with people living with MND and their families to understand what really matters in day-to-day care.
From these conversations, the team will create a comprehensive toolkit that doesn’t just exist on paper. It’s designed for real-life use by care coordinators, healthcare teams and families. The toolkit will include:
- A national framework that sets out what care coordination should look like in practice.
- An implementation and sustainability plan to ensure coordinators can deliver support consistently across Australia.
- An evaluation guide to track quality, highlight successes, and identify areas for improvement.
The ultimate goal is a system where people with MND never feel lost or alone in the healthcare maze. This project will help ensure that, whether someone lives in a city, a small town, or a remote rural area, care is connected, timely and tailored to their needs. By strengthening coordination, reducing stress, and supporting families, Dr. Hutchinson’s work promises to make a tangible difference in the daily lives of Australians living with MND.
What makes this research unique
This is the first national exploration of MND care coordination, taking a system-wide and equity-focused approach. By defining the skills, training, and structure required for effective care coordination, the project creates tools that can be used in real-world settings. “The FightMND care grant empowers the research team to build something actionable, inclusive, and lasting, grounded in equity and lived experience,” says Dr. Hutchinson.
Investing in better care today
FightMND is committed to advancing the search for a cure for MND while supporting research working to improve care experiences for Australians living with MND. Karen’s research is an example of projects working to achieve this. Strengthening coordinated care for people living with MND while helping families navigate complex health systems.
In 2025, FightMND is investing $22.9 million into cutting-edge cure and care initiatives, including care research like Karen’s. This investment ensures that while scientists work towards a cure, Australians living with MND, their families, and carers are supported every step of the way.
Explore our 2025 Cure and Care Investment Booklet to see the full range of projects we’re funding this year.
Together, we can beat the Beast.