The point of the annual conference
The annual advocacy conference of MS Australia was held in Canberra in October 2015. It brought the staff of MS Australia (the national peak body for MS in the country) and the staff of the independent state-based MS bodies together. But most importantly (from my point of view), it put the Advocates front and centre.
Advocates are people living with MS or carers of people living with MS. They know MS intimately, however much they would rather not. And they understand what it is like to be inside the healthcare system and at the mercy of policies and programs that may (and may not) make sense. They know what it is like to get lost in the system, and they know what can be done to improve it.
I have been an Advocate since March this year, and this was the first time I saw the organisation and Advocates in action, up close and personal. I was greatly impressed.
The plan for 2016
The conference was not just another conference, full of talk but no action. The talk resulted in a plan, and that plan will see the organisation and advocacy efforts through 2016 – a Federal election year, and therefore a year when advocacy matters.
In this election year, key areas of advocacy will be:
- Securing funding from the Medical Research Future Fund. Australian-based research into MS is world-class, largely due to the efforts of MS Research Australia and a number of research partnerships with universities and hospitals. Further funding, possibly in the form of seed investment, will create both hope for those living with MS as well as measurable research and employment opportunities within the Australian medical research community.
- Continuing to support the the rollout (and improvement) of the National Disability Insurance Scheme (NDIS). While roll-out dates have been announced for New South Wales and Victoria, much of the country is not yet certain when the NDIS will cover them. This creates uncertainty and needs to be addressed. In addition, ongoing evaluation of what difference the NDIS actually makes to the lives of those with MS will also be required, which means maintaining the flexibility of the scheme to enable ongoing modifications and improvements.
- Continuing to advocate for young people in nursing homes and the provision of adequate housing and assisted living. Caring for young people in nursing homes (whether they have MS, another chronic disease or they have suffered an accident) is simply a travesty. Australia can, and should, do better, and this includes access to adequate housing alternatives.
Individual states and Advocates will advocate on other localised and personal issues as they see fit. The national advocacy campaign, however, will focus on these core (and national) issues.
Collaboration with organisations representing other chronic and neurological diseases who share the same goals will be actively pursued. We can all benefit from an improved healthcare system, after all.
Thoughts and further insights welcome.