Australia’s first national survey of people affected by neurological conditions has revealed a clear and urgent message: too many Australians are navigating complex, fragmented systems without the timely, coordinated and affordable care they need.

In this episode of The Raw Nerve, we explore findings from the inaugural Neurological Alliance Australia Neuro Survey, which gathered experiences from 3,805 Australians affected by neurological conditions. The results paint a stark picture: fewer than four in ten respondents described their care as coordinated, more than half had difficulty accessing neurological care, one in three waited more than four years for a diagnosis, almost half delayed or skipped healthcare because of cost, and just one in ten felt fully supported by their healthcare team.

Recorded at the NAA Neuro Summit at Parliament House in Canberra, this conversation brings together survey evidence, lived experience, clinical insight, research, workforce priorities and policy discussion shaping the case for change. Summit themes include earlier diagnosis and specialist care, coordinated models across health, disability and aged care, investment in neurological research, a stronger neurological workforce, better national data, and equitable access to care regardless of where someone lives.

We hear why these gaps matter for people living with progressive, fluctuating and complex neurological conditions, and why delays in diagnosis, specialist access, treatment and support can affect health, independence, employment, family life and future care needs. The episode reflects lived experience, including the challenge of managing appointments, specialists, tests, treatments and out-of-pocket costs while often being left to coordinate care alone.

At its heart, the episode asks what needs to happen next — and how governments, clinicians, researchers, advocates and people with lived experience can work together on a coordinated national response. NAA is calling for a National Action Plan for Neurological Conditions, supported by state and territory plans, to give Australians affected by neurological conditions a fairer opportunity to receive timely, coordinated and affordable care.

The Summit, held on Thursday 13 August 2026 and helmed by MC Tracey Spicer AM, brought together a range of speakers including parliamentarians, people with lived experience, carers, clinicians, researchers, policymakers, sector leaders and advocates.