FightMND Director of Cure Research and Programs Dr Bec Sheean, Guideline Development Panel co-chair and General Manager Support Services at MND Victoria Jo Whitehouse, Guideline Development Panel co-chair Northcott Chair of Neurology and Director of Brain and Nerve Research Centre at Concord Clinical School, Concord Hospital, University of Sydney Professor Steve Vucic, University of Adelaide Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit Director Professor Zachary Munn and Phil Camden (front) at the National MND Guideline Kick-Off Event.
University of Adelaide researchers have started a two-year project to develop the nation's first clinical care guideline for motor neurone disease (MND).
Health Evidence, Synthesis, Recommendations and Impact (HESRI) Unit Director, Professor Zachary Munn, and his team, took the first steps towards a nationally consistent, evidence-based approach by bringing together key interest holders this week.
The project has been funded and supported by FightMND; the charity established by 2025 Australian of the Year Neale Daniher AO after his own diagnosis with the disease in 2013, Patrick Cunningham, whose wife was also diagnosed with MND in 2013 and the late Dr Ian Davis OAM who was diagnosed with MND at the age of 33.
With no cure for MND, best-practice care is essential for improving quality of life and symptom management. The Australian MND Guideline will provide standardised recommendations to support healthcare professionals, people living with MND, carers, and policymakers, ensuring a consistent, high-quality approach to care across Australia.
"We believe this guideline can have tremendous impact to improve outcomes for people living with MND," said Professor Munn.
"For the first time, Australia will have a nationally developed, evidence-based guideline for MND care."
"This initiative is critical to ensuring that all Australians living with MND receive the highest standard of care, no matter where they live."
"By working closely with clinicians, researchers, and people with lived experience including people with MND, genetic carriers and carers, we are building a guideline that is not only based on the best available evidence but is also practical, implementable, and responsive to the needs of the MND community."
MND is an umbrella term used to describe a group of diseases which affect the body's motor neurones, or nerve cells.
These nerve cells carry messages from the brain to the muscles via the spinal cord, but the motor neurones in a person with MND become damaged and start to die, so the muscles weaken and waste away.
A life-limiting disease, MND affects around 2000 Australians at any one time, with two people diagnosed, and two passing away every day.
Phil Camden knows all too well the impact of the disease, receiving his own diagnosis in 2013.
Starting as weakness in his legs, Mr Camden said he is grateful that his disease is slowly progressing.
"They say people live on average for 27 months after diagnosis, but all that means is 50 per cent of people don't live that long and 50 per cent of people live longer."Phil Camden
"I've lost some very dear friends who passed away quite quickly, one who was diagnosed in October and I went to her funeral the following March," said Mr Camden.
"I know I am fortunate and I am hopeful the guidelines will never allow people to do without the care they need ever again."
Mr Camden compared navigating the health system with MND to being in a maze.
"In a maze, you don't know how to get through it, you can't plan and you can get lost," he said.
"The guidelines are like using a map as they give you directions and let you know what's up ahead so you can prepare as best you can.
"Getting that help in this situation is so important for the future, it helps us get the right people in the right teams to deal with this battle as best we can.
"When I was first diagnosed, I thought a cure would be the ultimate thing, but now I'm so passionate about having guidelines in place because they are going to help people live the best lives they can while they can."
FightMND Director of Cure Research and Programs Dr Bec Sheean said the guideline project would be a gamechanger.
"In the fight against the beast that is MND, it is crucial that we don't focus solely on investment into research for a cure. We also work to fund initiatives that provide support to Australians living with MND today," she said.
"Currently, Australia lacks nationally consistent guidelines for the care of those living with MND.
"As a result, the standards of care differ greatly from state to state and between metropolitan and rural communities.
"This disparity creates significant inequalities in the quality of care provided, leaving patients and their families struggling to navigate a fragmented system.
"The development of this guideline ensures that anyone diagnosed with MND in the future, regardless of where they are in Australia, will receive the same high standard of care. This is a significant step forward in improving the lives of MND patients across the nation."Dr Bec Sheean, FightMND Director of Cure Research and Programs
"FightMND is proud to be investing in this critical work by the University of Adelaide. We look forward to working with Zac and his team to bring the project to life in the coming months," she said.
The Guideline Development Panel, comprised of clinicians, researchers and lived experience members from around Australia who will review, craft and vote on the recommendations, will also meet for the first time this week.
The panel will be led by co-chairs Professor Steve Vucic, Northcott Chair of Neurology and Director of Brain and Nerve Research Centre at Concord Clinical School, Concord Hospital, University of Sydney, and Jo Whitehouse, General Manager Support Services at MND Victoria.
"I've had a long-standing interest in MND as a clinician and researcher for more than 20 years, and am a big advocate for a more standardised model of care," Professor Vucic said.
"To date, research has focused on the basic science behind MND, which is incredibly valuable, but this guideline will bring MND care up into the 21st century."
Ms Whitehouse has been working with people with MND for seven years and believes the guideline will help level the playing field.
"I've been aware of the discrepancy in relation to clinical care provision across regions and states, for example some people across the country have access to non-invasive ventilation, some don't even though it has been proven to extend the life," she said.
"The guideline is super important as they will enable health professionals to consider and implement the best available evidence about care management for people living with MND.
"They will also help hugely with advocacy - to have best practice recommendations about MND care will enable us to approach health providers/funders to improve consistency of care across the country."
