The newsletter of the Health Care Consumers’ Association Inc.
Volume 11 / Issue 23 / 22 May 2025

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The HCCA team would like to thank everyone who has participated in our advocacy work this year, in the many ways that we work for change. Thank you to our consumer representatives, our policy contributors, our research participants, our members who give their time to guide our work and the staff in community organisations that we work with. We could not do what we do without you and we are stronger for your participation.

We wish you all a safe, restful break this summer.

After such a busy year, HCCA is closing its office from 4pm on Monday 23 December 2024 until 10am on Monday 6 January 2025. We will not be responding to emails or calls until after this break.

You can still email us at [email protected], but be aware we will only respond once we re-open after 6 January 2025. 

If you are in need of urgent support during this time, see this post on our website with our shut down details and referrals to crisis services.

We would like to introduce Yelena Minasyan, who is HCCA’s new Program Support Officer. Yelena will work across most parts of HCCA supporting our projects and events. You will see her in person and online when you participate in HCCA activities, and she will often be on the other end of our phone and admin email address. Yelena relocated to Canberra in July 2023 to focus on raising her family. With a background in Primary Health Networks, she is passionate about digital health and enhancing patient outcomes. Yelena is keen to contribute her expertise to the team and make a meaningful impact within the ACT community. Our Admin Officer Charlotte finishes with HCCA at the end of this year to go on travelling adventures. We wish her the best on her adventures.

The International Alliance of Patients’ Organisations (IAPO) is marking its 25th anniversary with a refreshed logo, new brand, and updated strategic goals. HCCA is a member of IAPO.

Vision: a world where health systems are shaped by the unique needs and preferences of the people and communities they represent

Mission: mobilise and support patient organisations around the world, empowering them to play an active role in decision-making processes shaping the global health landscape.

There is also a new strategic framework called FACE

• Facilitate
• Advocacy
• Collaboration
• Empowerment

This framework strengthens IAPO’s efforts to ensure healthcare systems prioritise patients' needs worldwide. As part of the celebrations, IAPO will launch a video series highlighting the work of its members.

IAPO is proud of its achievements over 25 years and is committed to advancing patient-centred healthcare for the future. Read more here. 

Darlene Cox
Executive Director

In this Issue

• Policy and Research Update
• Health Literacy Update
• Chronic Conditions Network Update
• Consumer Involvement and Representative Opportunities
• Items of Interest

Policy and Research Update

On 12 December, the Australian Government tabled its Response to the Senate Community Affairs References Committee Report on Assessment and Support Services for People with ADHD. The response includes a significant commitment to developing uniform prescribing rules across all states and territories. This is a key issue that emerged strongly from your feedback to HCCA and was highlighted in our submission to the inquiry.

In addition to the prescribing rules, the Government has also expressed in-principle support for several other recommendations aimed at improving ADHD services. We encourage you to review the full response on the Parliament of Australia website for further details.

While the year is drawing to a close, the work of the Policy and Research team continues. We still have a number of policies and procedures that would greatly benefit from your input. If you have some time over the busy holiday season, we would appreciate hearing your thoughts on the range of policy issues shared here.

We wish you a peaceful holiday season and look forward to your valuable contributions in the new year as we continue working on a range of important issues.

Thank you for your continued engagement!

— the Policy and Research team
(Jess, Stephen, and Shivana)

The Senate Community Affairs Legislation Committee is inviting submissions on the draft Health Legislation Amendment (Modernising My Health Record Sharing by Default) Bill 2024.

The Bill will require health care providers to share health information to consumers’ My Health Records by default unless:

• a consumer does not wish it to be shared;
• matching criteria of the consumers is not satisfied; and
• clinical concern about the consumer’s health, wellbeing and/or safety.

Consumers will continue to have control over who can access and view their My Health Record.

You can read the Explanatory Memorandum on the Bill here.

If you would like to provide input to HCCA’s submission on the Bill please contact Stephen on [email protected] or telephone (02) 6230 7800 by Monday 6 January 2025.

Canberra Health Services is reviewing their Consumer Compensation Claim Procedure. This Procedure sets out the process Canberra Health Services would use to manage a complaint if a consumer was seeking compensation.

If you would like to see a copy of the Procedure and provide feedback please contact Jessica at [email protected] or telephone (02) 6230 7800 by Monday 20 January 2025.

Canberra Health Services is reviewing their Intimate Body Care and/or Examination Procedure.

The Procedure ensures that consent to examination is agreed with consumers and the examination is undertaking in a sensitive manner with a witness/chaperone and/or support person present. The Procedure applies to adults and children.

If you would like to see a copy of the Procedure and provide input please contact Jessica at [email protected] or telephone (02) 6230 7800 by Monday 13 January 2025.

Mark your calendars with this local celebration of health research and knowledge sharing opportunity. Don’t miss your chance to engage with experts, learn about the latest health research, and connect with the community.

Program overview will be available soon.

Key dates

• 20 January – Abstract submissions open
• 3 March – Abstract submissions close
• 12 March – Rising star awards nominations open
• 30 March – Rising star awards nominations close
• 16-20 June – CHARM sessions and workshops

For more information contact: [email protected]

Health Literacy Update

As we wind up for the year, we want to give a huge thank you to our friends at different community organisations for having us along to your classes, social groups, coffee clubs and workshops to talk about health care. Our team presented over 30 sessions in 2024 and we’re already starting to schedule sessions for next year!

— the Health Literacy team
(C and Ivapene)

Be on the lookout for symptoms of heat exhaustion and heat stroke during the hot summer weather. Keep yourself safe by:

• Planning around the heat – avoid being outdoors between 11am and 3pm
• Seeking shade or shelter if you have to go outside
• Wearing light, loose-fitting clothing, a hat and sunglasses
• Using SPF 30 (or higher) sunscreen
• Staying indoors and using fans or air-conditioners
• Seeking cool places like public libraries and shopping centres
• Staying hydrated by drinking water, avoiding alcohol and caffeine

Seek help if you are concerned by:

• Calling healthdirect on 1800 022 222 for 24/7 health advice
• Contacting your GP
• Visiting a Walk-in Centre for non-life-threatening injuries and illnesses

In an emergency, dial triple zero (000) or go to the nearest hospital emergency department.

Chronic Conditions Network Update

Chronic Conditions Network (CCN) members recently gathered for the final meeting of 2024. This was a great opportunity to catch up with other members and talk about plans for 2025.

Thank you to all the CCN members who have joined meetings and events throughout the year and for your input on our health system and HCCA’s work. We hope to continue working with you all in 2025.

Keep your eye out for upcoming events in the new year.

— Michelle
(Chronic Conditions Network Coordinator)

Items of Interest

Researchers from Australian Institute of Family Studies (AIFS) are calling on LGBTIQA+ communities to help them investigate abuse and mistreatment of older LGBTIQA+ people. This research will help Government to better understand the types of abuse that older LGBTIQA+ people experience, the characteristics of those who experience and engage in this abuse, the impact on older LGBTIQA+ people, and their help-seeking behaviours.

All adults aged 18+ who identify as an LGBTIQA+ person are eligible to participate. You can get involved by completing this online anonymous survey. The AIFS want to understand the views, experiences and awareness about elder abuse from all people in LGBTIQA+ communities. Survey link here: LGBTIQA+ Community Online Survey | Australian Institute of Family Studies

Eligible pregnant women will be able to receive the RSV vaccine as part of the national immunisation program. RSV is a serious disease for newborns. The vaccine is recommended for women at 28-36 weeks of pregnancy. To be eligible, you must hold a Medicare card or be eligible to hold one.

The start date of the program is yet to be announced, speak to your health professional for more information.

**FREE interpreter services available over the phone via the Australian Government’s Translation and Interpreting Service (TIS) on 131 450**

© 2025 Health Care Consumers' Association Inc, All rights reserved. Edited by Darlene Cox.

Our mailing address is:
70 Maclaurin Crescent Chifley ACT 2606
02 6230 7800

Consumer Bites is the newsletter of the Health Care Consumers' Association. Consumer Bites provides a small snippet of health related articles our members might find interesting to consider and analyse. The HCCA does not endorse any opinions or the claims contained within the articles.

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