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Advocacy

Parkinson’s Victoria advocates for the needs of those living with Parkinson’s to government and health professionals, and strives to improve education in the health care sector.


Types of advocacy

Parkinson’s Victoria supports three types of advocacy:

  • Systemic Advocacy
    Parkinson’s Victoria aims to influence the 'system' (eg. the policies and procedures of agencies / governments) to change in response to people with the condition and their families / carers.
     
  • Self-Advocacy
    Parkinson’s Victoria aims to support people with this condition, their families and carers, to speak up for themselves. We work to help the Parkinson’s community develop or maintain the personal skills and self-confidence necessary to enable them to represent their own interests in the community.
     
  • Group Advocacy
    Parkinson’s Victoria aims to facilitate community organisations to represent the interests of groups of persons with the condition and/or their families / carers

Systemic Advocacy by Parkinson's Victoria

Advance Care Planning 

Final review of Advance Care Planning: Having the conversation. A strategy for Victorian health services 2014-2018. Victor McConvey has been a member of the Health Department working party, comprised of health and legal professionals form across government and non-government sectors. This document is a tool for health care professionals to start conversations about advance care planning.

Speech Pathology Australia Senate Enquiry

Parkinson’s Victoria on behalf of Parkinson’s Australia developed a response to the Senate Enquiry into Speech Pathology services with a focus on the needs of people with movement disorders. 

Agency for Clinical Innovation 

Parkinson’s Victoria participated in a review facilitated by the Australian College of Nursing of the clinical guidelines for Percutaneous Endoscopic Gastrostomy (Feeding tube) insertion. This is often a complex decision for people living with progressive neurological conditions and contribution ensures that these conditions and there ongoing needs are included in the document.

Dopamine Agonist Class action update

Parkinson’s Victoria has been collaborating with the Salvation Amy gambling counselling division for several years as a class actions proceeds related to people who were affected by gambling while taking Dopamine agonists, during the period where developing impulse control disorder which was an increasingly known side effect was inconsistently communicated to people on these medications. 

Continence Foundation of Australia Collaboration

This ongoing collaboration filmed a health care professional information video discussing the continence issues in Parkinson’s.  http://www.youtube.com/watch?v=F6daFQyGoX4&feature=youtu.be

Medicare Local community consultation - Barwon and Golden Plains 

Collaboration with Progressive Neurological organisations working promoting both an online survey and community forums to identify what services would be helpful for people living with progressive neurological conditions in the region. Results will be shared when collated and subsequent proposals for a Progressive Neurological support clinician /nurse may occur. 

Executive Summary of the Parkinson's Access Economics Report

This report provides facts and figures about the economic cost of Parkinson’s to the Australian community and is a useful source of information for advocacy purposes.
Download the Executive Summary of the Parkinson’s Australia Access Economics Report


Self-advocacy

Advocating for change in the lead-up to federal and state elections

The strength of an advocacy campaign comes from individuals who are willing to share their story and bring it to the attention of their local members of how government action could improve life outcomes for people with Parkinson’s and those caring for them.

Useful tips

  • Approach your local member and the local opposition member 
  • Write a letter to your local member outlining your personal story regarding your experience with Parkinson’s and ask them to address your needs. 
  • By writing a case study regarding your experience with Parkinson’s, you can illustrate how greater investment by government will lead to real improvements for both yourself and others. 
    • Include information about you, your circumstance, two or three key issues for you / your family and how the situation could be improved
    • Case study to be no more than 400 words
  • Write / call and request a meeting to discuss your story
  • Prepare for your interview as it is likely to be short ie. 15 minutes. Know what you want to say (2-3 key issues) and ask your politician to do something for you
    • Make your request specific ie. request for the local member to speak with relevant minister / shadow minister
    • As the meeting concludes, clarify what was agreed on, the timeframe and how progress will be communicated
  • It is important to stay in contact, so write and thank them for their time and restate any commitments made
  • Share your advocacy with family and friends. Let them know about your campaign and your approach to the local members. Ask them to join you or write letters of support

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