Advocacy

Our advocacy can be at an individual, system or government level, depending on the need. We will engage with State and Federal Government, members of Parliament and local representatives and candidates where needed.

Individually, we can provide advice and assistance around access to services, including identifying and engaging with external parties, other programs and Government support.

At a State level CFWA have advocated on behalf of our members for appropriate facilities and staffing at hospitals and action on topical issues such as vaping and smoking control.

Nationally, CFA has lead various advocacy campaigns which CFWA contributes to and supports, particularly in subsidised access to modulator and other medications and pharmaceutical subsidy schemes.

Current Advocacy Priorities

Updated or New Adult CF Outpatient clinic

To ensure West Australian adolescents and adults with cystic fibrosis receive the recommended standard of care, Cystic Fibrosis WA is advocating for an updated or new Adult CF Outpatient clinic (to replace the current SCGH outpatient clinic).

In November 2024, we joined forces with a group of community leaders to escalate this issue. The letter was supported by Cystic Fibrosis WA, Cystic Fibrosis Australia, Conquer Cystic Fibrosis, Amanda Bearcroft and Caz Boyd, Co-Chairs of the WA Adult CF Centre Consumer Advisory Committee and Mitch Messer, Consumer Advocate; 2024 West Australian of the Year – Community.

Together, we wrote directly to the Hon Minister for Health, to ensure she was aware of the urgency.
We would like the Minister to visit the facility first-hand and to provide a clear plan to improve the infrastructure and facilities.

You can support our joint call to action by Adding Your Voice:

Share your story. What is your experience with the adult outpatient clinic and what changes need to be made?
Sign up to share your story here

Write to your local member or candidates asking them to get involved. Tell them why this topic is important to you and how you’d like them to support.

Click here to find your local member

Contact us for more information or to support our work. Get in touch at communications@cfwa.org.au or on 08 6224 4100.

Self-Advocacy

Advocacy means standing up for your rights, standing up for someone else, or an issue you see within the broader community. Advocacy could be speaking up about issues that are impacting you in your life or speaking out on a larger scale to help create positive changes in society for many people. It is sharing your views and opinions with others to create change.

Writing a Letter

If you would like to affect positive change, you can write a letter to your local member, or other interested party (e.g., consumer liaison service). We have provided a template below to help guide your letter.

Advocacy letter template

Where to Send Letters

Parliament websites hold lists of Members’ contact details for their electorate office and Parliament House. Members’ contact details are available in various formats, including mailing labels, and can be downloaded from the URLs below.

Advocacy takes time. It can be a long process to create change. If you do not receive a response first time, follow up with the person you sent the letter to and ask if there is any update or if there is anyone else you should be addressing your letter to.

Consumer Engagement

Consumer Reference Groups

CFWA participates in consumer reference groups focused on the interests of children and families; and adults with CF. This includes both the Child and Adolescent CF Consumer Reference Group; and the Adult CF Centre Consumer Advisory Committee. Both groups link consumers, clinical staff and researchers and ensure a consumer perspective to research aspects of CF.

For more information about these groups, get in touch via email (admin@cfwa.org.au) or phone 08 6224 4100.

Evening with CF Scientists

CFWA aims to host an “Evening with CF Scientists” annually, including regional hosting periodically. A range of speakers showcase cutting edge research, some of which has not yet been published. This event is filmed and accessible online for those that are not able to attend in person.

Complaints

Care Opinion is an independent site where anyone can share their stories about their experience of care. The site covers health and aged care, and community services in Australia, giving service users, their families and carers the opportunity to publish their personal experiences, good or bad, of the care system.

CFWA Feedback

To contact or provide feedback to CFWA click here.