National summit calls for urgent action on neurological conditions

By Our Reporter
Representational Photo by Getty Images. Licensed under the Unsplash+ License

Neurological conditions are becoming a significant concern in Australia and worldwide, yet they remain under-recognised and underfunded. Today, a National Summit in Canberra aims to address this issue by calling for the establishment of a Taskforce for Neurological Conditions to urgently support millions of Australians living with these conditions.

A recent study published in The Lancet Neurology highlighted that more than three billion people globally, equating to one in three, live with a neurological condition, making these conditions the leading cause of ill health and disability. In Australia, the Australian Institute of Health and Welfare (AIHW) has identified neurological conditions as one of the top five disease burdens, impacting the economy by over $100 billion annually.

These conditions, many of which are incurable, progressive, and degenerative, result in significant disabilities. Very few have effective treatments available. Rohan Greenland, Chair of the Neurological Alliance Australia (NAA) and Chief Executive of MS Australia, points out that neurological conditions are not adequately addressed as a collective group, unlike cancer or cardiovascular diseases.

“Without effective strategies in place to mitigate their impact, they are a ticking time bomb on our health system and economy,” Mr Greenland said.

The NAA’s National Summit on Neurological Conditions at Parliament House, Canberra, brings together key decision-makers, political representatives, and people with lived experiences of neurological conditions to address this neglect. Anne Wilson, NAA Deputy Chair and Emerge Australia CEO, emphasised that a Government Taskforce could tackle the unique challenges faced by those living with these conditions, set priorities, and advance investment in research, diagnosis, treatments, support, and services.

“Every Australian knows someone living with a neurological condition and witnesses the lifelong impact on that person and their family, friends, and carers. We need all major parties to acknowledge the impact of neurological conditions and work with the Neurological Alliance Australia to give hope and certainty to Australia’s neurological community,” Ms Wilson said.

The summit also marks the launch of the Count Us In campaign, aimed at driving meaningful change by raising awareness, advocating for policy reforms, and empowering those affected by neurological conditions. Comedian, screenwriter, and advocate Tim Ferguson, who lives with multiple sclerosis, has lent his support to the campaign.

“There are millions of people, millions living in Australia with neurological conditions. We need more thought, more organisation, and more energy put into this particular sector of people. We have to get all of our politicians, all of our decision-makers, to start talking about neurological conditions as if they are the next wave of disability advancement,” Mr Ferguson said.

The Count Us In campaign video highlights six pressing areas that need comprehensive progression by a Taskforce for Neurological Conditions:

  • Greater investment in medical research
  • A stronger NDIS (National Disability Insurance Scheme)
  • Equal access to assistive technology
  • Establishment of a national neurological dataset
  • An end to NDIS age discrimination
  • Improved Aged Care, Health, and Disability sector integration

Mr Greenland acknowledged recent progress with the establishment of an NDIA (National Disability Insurance Agency) Neurodegenerative Disorders and Palliative Care Working Group, which has significant representation from the NAA. However, he stressed that much urgent work remains to be done.

“This announcement is an important first step, with the promise our community will receive a better understanding of their conditions from within the NDIA but much urgent work remains to be done,” Mr Greenland said.

Ms Wilson also highlighted the need for a national neurological dataset and dedicated neurological research funding. “We know there are world-leading researchers working hard to discover better treatments and, ultimately, cures for the range of neurological conditions. But progress cannot be made without significant investment, which is why we are calling for a Neurological Mission within the Australian Government’s Medical Research Future Fund,” Ms Wilson said.

The National Summit aims to make neurological conditions a national priority and push for urgent action and investment to support those affected.

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