Count Us In: National Summit calls for a better deal for the millions of Australians living with neurological conditions.

Neurological Alliance Australia (NAA) Chair and MS Australia CEO, Rohan Greenland highlights the neglect of neurological conditions as a disease group and outlines six calls to action the NAA is advocating for to ensure neurological conditions receive the recognition, attention and resources they deserve.

It was a cold and foggy day – 25 June to be exact – but our spirits were high. We were convening the first-ever national summit on neurological conditions right in the centre of political power – Parliament House in Canberra.

As Chair of the Neurological Alliance Australia, I have long championed the need for neurological conditions to be given the recognition, the attention, and the resources that are accorded to other leading contributors to the disease burden in Australia, such as cancer, cardiovascular disease and mental health.

In Australia, we know that neurological conditions are one of the five leading causes of our total disease burden and cost the community more than $100 billion a year.

We conservatively estimate that approximately one in four Australians live with neurological conditions, but the absence of official data hampers targeted interventions and perpetuates a cycle of neglect.

Most neurological conditions are incurable, progressive and degenerative and result in significant disability.

The sad fact is that neurological conditions, as a disease group, have been neglected.

There is:

• no national action plan to improve outcomes for the millions of Australians living with a neurological condition
• no national data set for neurological diseases
• no neurological workforce plans
• no strategies to improve brain health, including both primary and secondary prevention
• no MRFF neurological mission to provide focussed, sustained funding for research
• no coordinated efforts to improve early detection and intervention, and
• no targets and goals in place to measure progress on reducing the burden of neurological disease, improving quality of life and reducing mortality.

We need change, and we need it now. That’s why we brought people living with neurological conditions and the members of our rapidly growing Neurological Alliance together in Canberra to set out a clear, unambiguous case for neurological conditions to be properly recognised and supported as one of the leading causes of the disease burden facing this nation.

The World Health Organisation states that neurological conditions affect more than three billion people worldwide, making them the world’s leading cause of ill health and disability.

In Australia, we estimate that between six and seven million people have some form of neurological condition.

And yet, Australia has no neurological action plan. But the world does, the WHO Intersectoral Global Action Plan on Epilepsy and Neurological Conditions, endorsed in 2022 by all World Health Assembly members, including Australia.

So, at least Australia supports the need for action globally. We now need to see that support turned into action locally.

A federal election is due within 12 months, and we want all political parties to commit to – at the very least – establishing a task force to recommend what actions should be taken to establish a funded, national action plan to help improve prevention, early detection and intervention, management, care, and research of – and for – neurological conditions.

If neurological conditions cost our community $100bn a year, the very least the major parties can do is spend a few dollars on a task force.

But there is some good news.

The Federal Health Minister Mark Butler has expressed surprise at the lack of a national data set, and we are now working with the AIHW and the Health Department to address that glaring gap in our national health data collection.

There is also good news on getting the neurological voice heard within the NDIS, with our call for an advisory group to be established within the NDIA now addressed and the first meeting of the group held on 23 May.

So, good progress on two fronts.

In reality, these are but small steps with mountains still to climb.

In my role as CEO of MS Australia, I lead advocacy efforts on behalf of 33,300 Australians living with MS to secure greater research funding and health, disability, and aged care support. 

 We do this in pursuit of more effective treatments and ultimately, cures for MS, as well as the provision of support and services that will enhance quality of life and well-being. 

 As Chair of NAA, I advocate for the millions of Australians living with neurological conditions. 

 There is strength in numbers. 

 Speaking with one voice with a common and focused agenda, our work with the NAA, gives MS Australia an even stronger voice and greater influence. 

That’s why we have launched the Count Us In campaign, which shines a spotlight on the lifelong impact neurological conditions have on those who live with them, together with their family, friends and carers.

The campaign calls on the major parties to make commitments to six specific calls to action.

1. Greater investment in medical research through the establishment of a neurological research mission under the Medical Research Future Fund;
2. A stronger NDIS that responds to the needs of people living with neurological conditions;
3. Equal access to assistive technology;
4. Establishment of a national neurological dataset
5. An end to NDIS age discrimination, and
6. Improved aged care, health and disability sector integration.

Please support the Count Us In campaign. To view and share the Count Us In video and learn more about the campaign, please visit the campaign website.