Support for NAA Call to Action for a National Plan for Neurological Conditions

Last Thursday I attended the NAA (Neurological Alliance Australia - a national alliance of around fifty not-for-profit organisations representing the millions of Australians living with neurological and neuromuscular conditions as well as their carers ) Neuro Summit and the strong call to action for a National Plan for neurological conditions at Parliament House. Whilst there I also managed to squeeze in a quick meeting with my federal member who listened to my perspective and gave me a quick tour of what he reminded me is the People's House, where our voices should be heard.

The NAA summit brought together people with lived experience, parliamentarians, clinicians, researchers and sector leaders to discuss how we can improve neurological care, research and outcomes for Australians living with neurological and neuromuscular conditions, who experience a system that is difficult to access, fragmented in delivery and inconsistent in meeting people’s needs.

As a carer and lived experience advocate, I attended the summit as part of Brain Injury Australia’s delegation. Brain injury is known as the invisible disability. Individuals living with brain injury frequently fall through the cracks of existing systems because the condition is often invisible and variable in its presentation. Many are left without appropriate assessment pathways, supports or funding despite living with significant functional challenges. For brain injury survivors, a typical day is shaped by managing fatigue that nobody else can see. Energy reserves that most people take for granted drain rapidly and everyday tasks require disproportionate effort, but the world assumes you are fine because you look fine. Disability assessors need brain injury specific education. You cannot capture a true picture in one static assessment when symptoms are invisible, variable and fluctuating. Then there is the ongoing administrative burden. Appointments, evidence gathering, forms, conversations with people who do not understand brain injury and the constant pressure to prove the disability is real create additional strain.

The NAA have identified that neurological and neuromuscular conditions have a significant and sustained impact on individuals, families and the healthcare system. Their recent Neuro Services Gaps and Innovation Survey highlighted widespread challenges in accessing timely, coordinated and affordable care across Australia. Many people continue to experience a system that is difficult to access, fragmented in delivery and inconsistent in meeting people’s needs. Research is the vital link bridging the gap between policy failures and real-world outcomes. Lived experience advocates must be included in the co-design of policy frameworks and granted the same professional standing as credentialed clinicians. Knowledge developed through survival deserves the same respect as knowledge developed through formal training.

With dementia now the leading cause of death in Australia we must question whether neurological conditions falling through the cracks is a major contributor to this growing crisis. People living with brain injury face an elevated risk of dementia later in life. This is why access to resources is vital.

Today marks the beginning of Brain Injury Awareness Week here in Australia which makes it especially timely to highlight the need for a National Neurological plan. No family should endure years of fighting their way through red tape while waiting for the support they need. Research must translate into policy because lived experience and science together drive meaningful reform and access to resources and community connection is a human right, not a privilege.

Congratulations to NAA's David Ali and Rohan Greenland on a very successful Neuro Summit. I support the call to action for a long overdue National Plan for neurological conditions. For more information on Neurological Alliance Australia go to https://neurologicalalliance.org.au/

Belinda Adams OAM Carer/Brain Injury Advocate

Director | Citrine Sun Entertainment

Atlantic Fellow in Brain Health Equity | Global Brain Health Institute UCSF

Ambassador | The Hopkins Centre