The advocacy work of MS Australia exists on many levels including:
Individual advocacy: supporting people to understand and exercise their rights. Individual advocacy may be informal and undertaken by family and friends or structured advocacy provided at a local level by state based organisations. It focuses on changing the situation of one person: protecting their rights; facilitating control over their situation; improving access to services; assisting with negotiating the health and disability systems and to make services accountable ensuring there is transparency in their actions and decisions.
Systemic advocacy: to make systemic changes to improve the situation of a whole group of people who share a similar issue, such as people with MS. This is achieved by encouraging changes to the law, government and service provider policies and community attitudes.
Collaborative advocacy: people with MS share many of the same issues as others who may be affected by disability or other disease processes, such as a progressive motor neurological disease. MS Australia seeks opportunities to work collaboratively with other representative organisations to increase the voice and profile of advocacy for people with MS. For example, MS Australia is an active member of the Multiple Sclerosis International Federation (MSIF) and other peak bodies in Australia such as the Consumers Health Forum, the Australian Council of Social Services, National Disability Services and the Neurological Alliance Australia to advance the interests of people affected by MS.
About our National Advocates Program:
As the peak body representing people with MS, the advocacy role of MS Australia seeks to bring about systemic change that will lead to more effective management of MS and ultimately a cure; and to enable people with MS to better manage their symptoms, enhancing quality of life, health and wellbeing.
Working with MS Research Australia and supported by the State MS Societies, our advocacy work includes regular representations and submission responses to the Australian Government. Additionally we work collaboratively with other organisations at a national and international level where a common purpose exists.
A significant component of our advocacy work is delivered through our National Advocates Program under the stewardship of our National Advocates Program Coordinator.
The National Advocates Program links to the work of the State MS Societies, special interest groups and individuals through a network of volunteer Advocates, who lobby and advocate for the MS community, helping to raise awareness of multiple sclerosis and its impact. The Advocates support the work of MS Australia including adding to the lobbying of Federal Government through regular meetings with local members of Parliament.
Our National Advocates team encompass a combined total of more than 300 years' experience of living with MS (total years since diagnosis), including an enormous breadth, depth and variety in their personal circumstances and life with MS, that we are able to draw upon in advancing the Advocacy work of MS Australia.
You can learn more about who our National Advocates are here.
An example of our current advocacy is working towards sustainable and increased funding for MS Specialist Nurses (MSSNs).
The MSA Multiple Sclerosis Specialist Nurses in Australia Report – the first study of its kind - is intended to build an evidence based business case to support our work with this vital professional group.
The report’s genesis was a 2015 workshop where 40 people talked about their needs as someone living with MS, highlighting the MS Nurse as one of the most important.
In preparing our report, MSSNs were identified as the healthcare professional that people affected by MS wanted to talk to, about symptom management and care options. MSSNs play a key role informing and advising patients, family and carers, at diagnosis and throughout every stage of the disease.
Our vision is broad systemic changes to address the gaps in MS Specialist Nurse service provision and access, and to see the profession, which has suffered from a critical skills drain, acknowledged as invaluable for people affected by MS, with appropriate funds to secure the role’s future.
“The support provided by MSSNs makes a real difference to the lives of people living with MS”, says MS Australia CEO Deidre Mackechnie.
“Our benchmark report is a key advocacy tool, toward a change in model of care”, Ms Mackechnie says adding “the MS Nurse is an essential part of the MS patient care team. Everyone in this group plays a vital role in MS patient care, and we want to ensure the MS Nurse remains part of the team.”