The newsletter of the Health Care Consumers’ Association Inc.
 Issue 4 / 7 March 2026

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HCCA members have given us a clear message of support around the implementation of this scheme. HCCA welcomes the release of data from the first few months of the Voluntary Assisted Dying scheme, implemented in late 2025. Minister Rachel Stephen Smith has told media that the scheme is working as intended, with 14 people in the ACT having exercised their right to die in this way so far.  You can read more about her update here. The release of this data is important and a step forward for the timely, transparent and publicly available reporting of data across public health services in the ACT which should be visible to all residents.

We’re pleased to let our members know that Bernadette Carter has joined us in the Project Officer Infrastructure role while Yelena is on maternity leave. Bernadette is new to Canberra, having just moved here from the far north coast of NSW. Bernadette has a background with project work in health and Government and is looking forward to working closely with consumers and members to support HCCA's work in key advocacy pieces around health infrastructure in the ACT. She is enjoying meeting everyone and getting up to speed on all things health infrastructure.   

Last month I have had a significant focus on meeting members, stakeholders, key partners and funders. Continuing HCCA’s strong history of engaging face to face and focusing on building our advocacy and messaging platforms from a position of trust and relationship. HCCA has a deep and rich history which values the importance of creating strong connections within community and Government. This has been critical to the success of the organisation and I intend to ensure that continues into our future.  

I believe that HCCA, its members, our team and I are strongly positioned to continue the important messaging and influence needed on the key areas outlined in our Strategic plan.

Lachlan Atyeo
Executive Director

In this Issue

• Upcoming HCCA Events
• Infrastructure Update
• Policy and Research Update
• Health Literacy Update
• Health Literacy - QUM Update
• Consumer Involvement and Representative Opportunities
• Items of Interest

Upcoming HCCA Events

Wednesday 11 March, 2pm - 3:30pm

Online via Zoom

How would someone know your health care choices if you couldn't tell them? With an Advance Care Plan, you can make sure your loved ones and health workers know your choices.

March, Thursday 12th, 19th & 26th, 4-6pm

Online via Zoom

This training is for anyone who uses health services and would like to learn more about the health system, and how to advocate for improvements within the system.

Any questions please contact Av at [email protected].

Thursday 19 March, 1:30pm – 3:30pm

Brindabella Room, Southern Cross Club Tuggeranong

We’re partnering with Palliative Care ACT for our Advance Care Planning Week Afternoon Tea! Come along to learn about planning for health and aged care palliative care, cancer support and much more!

Infrastructure Update

The first Health Infrastructure Consumer Reference Group Meeting for 2026 is coming up on 19 March 2026. The reference group will be looking at design considerations in short to medium term residential health care facilities. The group will also give some feedback about consumer needs for design in community health centres.

Two focus groups are currently in plan for input into the Northside Hospital, one looking at Accessibility and the other on design for Family and Carer needs. These will likely be held in late March and early April. There will likely be more to come on the focus groups and how to get involved.

If you have something to say about the design of health care facilities and what is needed to make them comfortable, practical and welcoming for consumers, carers and families, please get in touch with Bernadette at [email protected]

— Bernadette
(Infrastructure Project Officer)

Policy and Research Update

The Department of Health, Disability and Ageing is seeking consumer views on Medicare referral processes (the way we access specialist medical care and receive a Medicare rebate for their fees). They are conducting a survey that you can complete online.

You can read the Consultation Paper and share your views on the Department of Health, Disability and Ageing website. This short consultation closes on 6 March 2026.
We know that the referral process is a point of frustration for many consumers and will be submitting HCCA’s own response to the consultation. If you have something to include please reach out quickly. We are currently working on consumers input further opportunities to participate in this work as it progresses.

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

Health Literacy Update

This fortnight, C presented:

• Training on Practical Ways to Support People with Disability to around 40 staff at Canberra Health Services’ quarterly Diversity and Inclusion Day
• A workshop on Stretching Your Health Dollar at Care Financial Services.
• 2 Advance Care Planning sessions at Heart Support ACT’s peer support group and in-person at Chifley.

This is just a warm-up for Advance Care Planning week, where you can join us for even more conversations about advance care planning, aged care navigation, finances, palliative care, cancer support and planning for your pets at our big afternoon tea with Palliative Care ACT!

Ivapene presented:

• Navigating the Health System to 25+ participants from Carers ACT Sri Lankan community group
• My Health Record to 40+ participants of Multicultural Community Council of Illawarra’s (MCCI) Vietnamese group. This is a new health presentation in collaboration with the Federation of Ethnic Community Councils of Australia (FECCA).

Caption: Vietnamese Group MyHealthApp

Over the past 4 weeks, Ivapene supported the University of Canberra’s SPECTROM-ASPIRE project. The project aims to develop a nation-wide, freely available training programme on psychotropic medicines for those who work in the disability sector. Ivapene support included:

• training project facilitators on how to engage/work with consumers/community in research
• 1 of 5 facilitators for focus groups in Sydney, Canberra, Adelaide and Orange

— the Health Literacy team
(C and Ivapene)

When you're feeling unwell, the last thing you need is jargon standing between you and the right care. That's why Canberra Health Services (CHS) engaged HCCA to help shape a new online tool that makes it easier than ever for Canberrans to know whether a Walk-in Centre (WiC) can help them.

The tool, now live on the CHS website, lets you browse by health category and quickly see what Walk-in Centres can treat, what they can't, and when you should head to an emergency department or call 000. It’s a simple concept but getting the language right took genuine consumer input.

Thanks to your valuable feedback, the tool is meaningfully different from what it started. Headings were rewritten to be more descriptive and intuitive (‘digestive conditions’ had ‘stomach and gut’ added to improve understanding) and plain language replaced clinical terms (eg, stitches, not sutures). Terms that might have left consumers guessing were given clear definitions, for example, ‘severe eye pain’ is now explained as ‘pain so bad it stops you from doing your usual activities’.

The tool that Canberrans are now using is more useful because of the input of our members.

We're grateful to everyone who contributed. 

Last week’s episode of Four Corners, Scarred, has sparked a lot of conversation about evidence-based care, informed consent and consumer safety in endometriosis treatment. We encourage you to read QENDO’s statement about the episode.

The ABC has shared some tips on what to do if you think your endometriosis treatment may have been inappropriate. Below are some resources for people in the ACT:

• To make a formal complaint about your treatment, contact the ACT Health Services Commissioner. They can help you navigate the complaints process even if you saw a doctor in another state.
• If you need records from Canberra Health Services, you can check your Digital Health Record using MyDHR, or
• You can request your full record from the CHS Health Information Services
• HCCA’s complaints guide has factsheets on how to write a complaint and accessing your medical records in other services.

If this story has had a negative impact on you or someone you know, please seek support.

• Lifeline #13 11 14 
• Beyond Blue #1300 22 4636
• Headspace #1800 650 890
• 13YARN (Aboriginal or Torres Strait Islander) #13 92 76
• QLife (LGBTIQ+)  #1800184 527
• Open Arms (Veterans, and family) #1800 011 046

Palliative Care ACT is holding a workshop on 4 March to give people with life-changing diagnosis practical tools to improve that journey. Find more information and get your ticket on their website. If cost is a barrier for you, contact their office to discuss how you can still be involved.

Health Literacy - QUM Update

Gout is a common form of arthritis. It is caused by a build-up of uric acid in the blood, which form sharp crystals in the joints.

A recent segment on ABC Radio Nationals’ Health Report explores:

• why gout is common,
• how it’s treated, and
• why many people are not offered long-term management options.

It gives a clear and practical overview of gout care and prevention.

The segment page also includes links to consumer gout resources developed through our Quality Use of Medicines (QUM) program, with Arthritis Australia.

If you or someone you know is living with gout, our gout decision aid can support conversations with a health professional about your care. It explains treatment options and what long-term management can involve. It helps you understand your choices, ask questions and feel more confident about what’s right for you.

We are well into resource development for our program on Antidepressants in Teens and Young Adults, and starting resource development for Menopause. All consumer resources developed under the QUM program can be found on the HCCA QUM Website.

Our program on Secondary Stroke Prevention is in the research and design phase. We are close to beginning work on Osteoporosis – Secondary Fracture Prevention. If you have lived experience as of Osteoporosis as a consumer or carer, the QUM team would be keen to hear from you.

To get involved, call: (02) 6239 7800 or email: [email protected]

— the QUM team
(Kathryn, Nadia and Darcy)

Consumer Representation and Advocacy Opportunities

Please visit Consumer Opportunities on the HCCA website to learn more about, and nominate for, any of the following opportunities.

We invite members to join our internal consumer reference groups and help shape our work.

The Health of Older People Consumer Reference Group is open to all members who are interested in issues affecting the health of older people. This included access to care, medicines, quality of care and aging well.

The group meets every other month on the first Wednesday of the each month from 11:30am – 1pm.

The Quality and Safety Consumer Reference Group is for consumer representatives who sit on committees focused on quality and safety. This group is an opportunity to share issues raised at committee meetings and strengthen consumer input into health governance processes.

If you would like to join either group, please email [email protected]. 

 New! 

The Division of Rehabilitation, Aged and Community Services (RACS) Quality and Safety Committee is seeking a consumer representative member. This committee provides leadership and guidance to the RACS division on quality and safety matters.

The Committee’s objectives are:

• Empowering staff to provide safe and high-quality care to consumers
• Making decisions about allocation of resources to make improvements or resolve issues
• Communicating with and on behalf of the division about quality and safety matters

This role will suit a consumer who has an understanding of and/ or interest in rehabilitation, aged and community health services, is comfortable working at a governance level and wants to work with a passionate team open to consumer input to improve consumer quality and safety.

To learn more, please visit the Consumer Opportunities page on our website.

 New!  Closing date:  Wednesday 11 March 2026

WWDACT is looking for 5 women and gender diverse people with disabilities to join a new Lived Experience Panel. The Panel is part of a new project WWDACT is doing with Women's Health Matters to scope sexual health, information and education services available to women with disabilities in the ACT.

The panel is open to women, non-binary and gender diverse people in the ACT (including trans women), who are 18 years or older.

More information and application form available through this link. Apply for the Lived Experience Panel – Sexual Health Project – Women with Disabilities ACT

 Closing Soon!  Closing date: Wednesday, 18 March 2026

This committee oversees the effective systems of clinical governance for the allied health professions at Canberra Health Services.

This would suit an experienced consumer representative who has an interest in allied health, an understanding of clinical governance, or an interest to learn about it and feels confident to join a discussion and contribute a consumer perspective to the professional leads of these areas at Canberra Health Services. Allied Health are a diverse group of specialties- you can read about them here.

To learn more, please visit the Consumer Opportunities page on our website

 New! 

Researchers from UNSW Sydney and Austin Health are seeking consumers to work with them to co-design strategies that support better hand hygiene practices among patients and visitors in hospitals.

The aim of this project is to understand the barriers and opportunities for improving hand hygiene and to co-develop practical approaches to reducing the risk of healthcare-associated infections.

Items of Interest

A new pilot study in Brisbane is being led by researchers at Queensland’s QIMR Berghofer. They are recruiting people newly diagnosed with diabetes to test whether a non-invasive CT screening can catch pancreatic cancer earlier.

To read more, click here.

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

© 2026 Health Care Consumers' Association Inc, All rights reserved. Edited by Lachlan Atyeo.

Our mailing address is:
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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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