Advocacy is the process of seeking support for a cause or policy.
In this case the cause is support for the NSW Parkinson’s community and funding for services. However because of its highly targeted and often confidential nature, much of the advocacy done by this organisation goes unseen by the community it serves.
This article is intended to give some insight into the advocacy activities of Parkinson’s NSW.
Thanks advocacy by two prominent State MPs with an interest in our cause, Parkinson’s NSW over the past year was twice invited to participate in information evenings at Parliament House.
The receptions were attended by MPs and their advisors from across the political spectrum and featured speeches from the President and CEO of Parkinson’s NSW.
“The latest research tells us that there are already 69,600 people living with Parkinson’s in New South Wales. If you add in caregivers and immediate family that brings the total of people affected by Parkinson’s in some way to more than 200,000… and most of them are voters!
“The general population growth rate of Australia is just over one percent. However, the average growth rate in Parkinson’s will be 40 percent over the next 20 years. This presents a major public health challenge that can’t be ignored.”
Extract from speech to parliamentarians by Parkinson’s NSW Chair, Margaret Scott
Former Deputy Premier of NSW, The Hon. John Watkins AM, who is living with Parkinson’s, also spoke movingly about the impact of the disease on his physical and mental wellbeing. He has since been appointed a Board Member of Parkinson’s NSW where he is playing an active role in ongoing political advocacy.
Annual mailing campaigns around Budget time have also been conducted. They addressed every MP in NSW along with the State and Federal Health Ministers, requesting recurrent funding for the delivery of services to the Parkinson’s community.
This is a priority because almost 90 percent of funding for Parkinson’s NSW activities currently comes from fundraising. This is not sustainable.
“Parkinson’s has become… a hated influence that has invaded my body to deform my abilities and sense of self.”
Extract from Sydney Morning Herald opinion article by Parkinson’s NSW Board Member, The Hon. John Watkins AO
Co-funded Parkinson’s Specialist Nurses
Research conducted by the Faculty of Nursing, Midwifery and Indigenous Health of Charles Sturt University indicates that the most effective model for Parkinson’s Specialist Nurses is:
- To have them jointly funded by Local Health Districts (LHDs) and Parkinson’s NSW
- Jointly managed by the two organisations
- Based in the LHD offices in order to provide nurses with access to health records and data, professional development opportunities and peer support.
Therefore advocacy to the management of LHDs across NSW where nurses are not yet placed is ongoing. Our most recent success has been the placement of a co-funded nurse based in Goulburn, within the Southern NSW LHD.
Joint advocacy with Parkinson’s NSW Support Groups
Parkinson’s NSW encourages all Support Groups to engage in joint advocacy at their local level to raise the profile of Parkinson’s in the community and enlist the support of MPs to make submissions to key Ministers.
Pro forma letters and advice on how to engage with MPs are provided by Parkinson’s NSW.
A video message from the Chair on World Parkinson’s Day goes out to all Support Groups and via social media to raise the profile of the Parkinson’s community across NSW.
Joint advocacy in the not-for-profit and healthcare sectors
Parkinson’s NSW is working with Fight Parkinson’s (formerly known as Parkinson’s Victoria) to jointly target the Federal Health Minister, advisers, and other members of the national health bureaucracy. This involves multiple meetings and outreach, backed by a well-researched document supporting our request for funding.
Our organisation also works with others in the healthcare sector. For example, we supported St Vincent’s Hospital’s bid for increased funding to treat Movement Disorders and joined the Australasian Neuroscience Nurses Association (ANNA) to lobby the Minister for Health for a rapid resolution of the SinemetTM shortage.
Parkinson’s NSW has also made formal written submissions to Government inquiries into:
- The National Disability Insurance Scheme
- Aged Care Quality and Safety
- Regional, Rural and Remote Health