Consumer Bites

The newsletter of the Health Care Consumers’ Association Inc.
 Issue 17 / 8 September 2026

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Message from the Executive Director

Thank you to everyone who attended the Live Well, Die Well morning tea as part of Dying to Know Day. It was wonderful to see so many people come together to have open conversations about palliative care, advance care planning, grief, support services and end-of-life choices. Thank you to our participants, guest speakers and partners at Palliative Care ACT for helping create such a welcoming and supportive space. We look forward to continuing these important conversations across our community.

I was also pleased to attend the launch of the National Health Literacy Framework at the University of

Sydney this week. The framework provides practical guidance for governments, health services, health professionals, researchers and community organisations to improve the way health information and services are designed, delivered and communicated. Health literacy has long been a priority for HCCA. For more than 40 years, we have supported consumers to access reliable health information, navigate the health system and participate in decisions about their care. We welcome the framework and the national focus on making health information easier to understand and use. This new framework presents an opportunity to create a universal approach that supports everyone to improve their understanding and literacy around health.

This week, HCCA also joined Palliative Care ACT and Community Options in calling for certainty about the future of community support services for people with complex health needs. In a joint media statement, we highlighted concerns about the planned closure of Community Options and the lack of a clear plan to replace its unique support model. Together, we called on the ACT Government to identify and fund a pathway that ensures people living with chronic illness, life-limiting illness and other complex circumstances continue to receive the flexible support they need.

Lachlan Atyeo
Executive Director

 

In this Issue

  • Upcoming HCCA events
  • Infrastructure Update
  • Health Literacy Update
  • Quality Use of Medicines (QUM) Update
  • Policy and Research Update
  • Consumer Representation and Advocacy Opportunities
  • Members Spotlight
  • Items of Interest
 

Upcoming HCCA Events

Panel: Safer Use of AI in Health Care 

Join HCCA ahead of World Patient Safety Day for a discussion on safe use of artificial intelligence (AI) in health care services. We’ll be asking experts how AI is being used in health care in the ACT/Australia, how it is regulated and what can make it safer.

Learn more and register on Humanitix
Consumer Representative Training (Online only)

Consumer Representative training is now open for registrations. All are welcome to attend this free online training! 

This training is designed for anyone who uses health services (in the ACT and outer state). Learn how the health system works, build your advocacy skills, and advocate for improvements within the system. This free three-part online training will be held via Zoom on 8, 15 and 22 September from 4pm to 6pm. 

Learn more and register on Humanitix
Advance Care Planning Appointments

3rd Tuesday of the month, 12:30pm-6pm @ Chifley Health & Wellbeing Hub 

Making an Advance Care Plan means your loved ones and health care team will know your wishes if you can't speak for yourself. Book in for 1-on-1 support to write your plan with Canberra Health Services. 

Contact the HCCA office to register
 

Updates from the Office

Consumer Participation Update

Infrastructure Update

Members Survey on Building 5, Canberra Hospital 

Thank you to members who submitted the survey on Building 5, Canberra Hospital. We received 32 responses, and the early findings are providing valuable insights into how the building's consumer-centred design features are working in practice. We are currently preparing a report and will share the findings on Consumer Bites once it is finalised. 

Planning and Design of Northside Hospital  

Consumers and HCCA Infrastructure team members recently attended a briefing from Infrastructure Canberra on the progress of the Northside Hospital design. 

The HCCA Infrastructure team also attended a workshop last week with our colleagues in Infrastructure Canberra and Canberra Health Services to work through the register of issues and needs that consumers have raised in the design of the new Northside Hospital. This is an important part of community participation in infrastructure work. Large projects like the Northside Hospital take many years to be completed. Updating the progress on our register means that we can report back to community members how the needs they have shared and suggestions they have made are being considered in the design of the new hospital.

Visit to Blacktown Hospital Carer zones 

Kate and Lachlan visited Blacktown Hospital to learn more about its Carer Zones. These are dedicated spaces within single inpatient rooms that allow carers to stay overnight, including a lounge that converts to a bed and facility to create a private space for carers. Overnight stays are supported by hospital policies and procedures and are now a standard part of care at Blacktown Hospital.

A key takeaway from this is the important recognition that carer support improves clinical care and outcomes, something that is often overlooked and not given the recognition it should be.

To learn more about Carer Zones at the Blacktown Hospital, please visit the NSW Agency for Clinical Innovation website. 

— the Infrastructure Officer
(Bernadette)

Health Literacy Update

In the past fortnight, the team has presented on Staying Safe in Hospital at Capital Region Community Services and Advance Care Planning at the Whitlam Mingle. 

Join Parkinson's Community Seminar on Advance Care Planning 

Join The Hospital Research Foundation Group for their Parkinson's Community Seminar on Advance Care Planning on 9 September 2026. Our Health Literacy Officer C will be simplifying this confronting subject in a calm and simple way, tackling questions such as 'What is advance care planning?' and 'When is it used?'. This event is available in-person and online.  

To register, please visit The Hospital Research Foundation Group website.

Accessible consumer medicines information 

MedsInfo has recently updated their website to include plain language summaries, large print versions and audio recordings of Therapeutic Goods Administration (TGA)-approved Consumer Medicines Information (CMI). This makes it easier for consumers to get accessible, reputable information about the medicines they are taking.  

Visit the MedsInfo website.

Welcome to new FECCA CEO and Launch of 2026 FECCA Conference

HCCA joined the ACT Multicultural community and the team at Federation of Ethnic Communities Council of Australia (FECCA) to welcome their new CEO Prerana Mehta and launch the 2026 National FECCA Conference in Canberra. 

Find out more about the conference on the FECCA website.

Caption: HCCA team at the launch of 2026 FECCA conference

— the Health Literacy team
(C and Ivapene)

Quality Use of Medicines (QUM) Update

QUM Shared Decision-Making Resources

The first resources for each of our QUM topics include a focus on shared decision-making. Tools like this can help support conversations between consumers/carers and health professionals and help personalise your care. 

Some of our QUM program shared decision-making resources include: 

  • My Gout Care Plan - helps you track your gout medication, record uric acid levels and document your treatment plan. 
  • Anticoagulants Care Plan – helps you decide if an oral anticoagulant is right for you. It can support you in talking with your health professional about lowering your risk of stroke.
  • My Antidepressant Deprescribing Plan – designed for older people to use when ready to safely reduce or stop an antidepressant medicine by tailoring an individual step-by-step plan.
  • Managing menopause: choosing what works for you – Menopause treatments are individual. This care plan will help you talk with your health professional about what options might best suit you. 
  • Minding your mental wellbeing: A guide for when you feel out of balance or overwhelmed – designed for younger people and parents/carers. A guide to help you talk with your health professional when you feel overwhelmed and need support. It includes supports available and how to create an action plan.  

Many other QUM resources and useful topic information can be found on our HCCA Quality Use of Medicines Resource Hub. 

— the QUM team
(Kathryn, Nadia and Darcy)

Policy and Research Update

Inquiry into access to and affordability of medical specialists

The Australian Government is conducting an inquiry into access to and affordability of medical specialists.

We know there are many barriers to consumers getting specialist care when they need it. We are keen to hear about your experiences accessing specialist care in both the public and private health systems.  

You can read the Terms of Reference for the inquiry on the Parliament of Australia website, or we can provide you with a copy.

If you are interested in sharing your thoughts and experiences, please contact Jessica Lamb via [email protected] or by calling the HCCA office on 6230 7800.  

Expression of Interest: National Consumer and Carer Panel – Digital Health 

Do you have an interest in digital health? Have you been involved in digital health projects, such as the implementation of the Digital Health Record (DHR) or other digital systems?  

CSIRO is leading a program to develop national health data standards. The program called Sparked is a partnership between clinicians, IT vendors, health service administrators, policy makers, and most importantly consumers.  

You can learn more about the work of Sparked on the Sparked CSIRO website. 

You are invited to complete an Expression of Interest to be part of a national Consumer and Carer Digital Health Panel. You can express your interest by following this link: EOI National Consumer and Carer Digital Health Panel – Fill in form 

— the Policy and Research team
(Jess, Scott, and Fiona)

 

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.

Other Opportunities

TGA public consultation on sharing information about medical devices

The Therapeutic Goods Administration (TGA) has opened public consultation asking for feedback on proposed changes to the information shared by TGA about the safety, quality and performance of medical devices. The aim of the proposed changes is to give the public more information after reviews or investigations of medical devices, especially when the results relate to their safety, quality, how well they work, or how they’re used. 

The consultation closes on the 2nd of October 2026.  

To learn more and to submit feedback, please go to the TGA government website.

 

Members Spotlight

Miriam Pavic 

After a career as a registered nurse and midwife, and 14 years as a community representative on the Human Research Ethics Committee, Miriam thought her involvement in health care had come to an end. Then, in 2019, she saw an advertisement for HCCA's Consumer Representative Training and decided to give it a go. 

"I thought I had something to offer," she says. "Health is such a broad topic and I felt I could contribute in some way." 

Miriam became an HCCA member shortly after the training and has been actively involved ever since.

Over the years, Miriam has served on various committees including occupational violence, pathology services, maternity and gynaecological quality and safety, and hospital infrastructure projects. 

One achievement she is particularly proud of is advocating for improved access to pathology results. Along with other consumer representatives and HCCA staff, she helped raise consumer concerns about delays in receiving test results. Today, many pathology results can be accessed digitally by patients, helping people get information quickly and reducing anxiety while waiting. 

Miriam also contributed to the refurbishment of Canberra Hospital's anatomical pathology laboratory as the sole consumer representative on the committee. The refurbishment delivered a much-needed upgrade to a facility that had become outdated and overcrowded. She was particularly pleased to see improved safety, increased workspace, and a more ergonomic environment for staff in the upgraded facility.

"A big thank you and congratulations for the pathology team in making this project a success against significant obstacles", she says. 

For her, consumer representation is about making sure people are heard. 

"Some people don't know how to navigate the health system, and some feel they don't have a voice. Everyone deserves to be heard, and there's always room to improve safety, quality and accountability in ACT health care services." 

Reflecting on her time as HCCA member, she says the support from staff and fellow volunteers has been invaluable. 

To anyone considering becoming a member or consumer representative, she says, "Give it a go. Do the training. There is no exam! You have a voice; the opportunity is there to be heard. There’s always someone at HCCA to support you." 

 

Items of Interest

Co-design the new SBLGBTIQA+ peer group for adults with disabilities

Women with Disabilities ACT (WWDACT) is planning to create a peer group for SBLGBTIQA+ (Sistergirl, Brotherboy, Lesbian, Gay, Bisexual, Transgender, Intersex, Queer, Asexual, and Plus) people with disability (PWD) in Canberra. They are looking for feedback on the type of peer group, activities, and accessibility considerations. You can take the survey if you are over 18, SBLGBTIQA+, a person with disability, and live in or around Canberra. 

For more information and to take the survey, please visit this SurveyMonkey page. 

Supporting People at Risk of Losing NDIS Access or Funding

Therapy Near Me has developed a free guide to help people understand their options if they are at risk of losing NDIS access or funding. The guide includes information on reviews and appeals, gathering evidence, transition planning, advocacy support, and connecting with health and community services. It may be useful for participants, families, carers, advocates and service providers navigating changes to NDIS funding. 

To access the guide, please visit the Therapy Near Me website. 

Global blood services call for more donors

Blood services in Australia and around the world are calling for more people to donate blood as supplies come under pressure from seasonal illness, extreme weather and growing demand. In Australia, Lifeblood recently launched an urgent appeal for 12,000 donors to help maintain blood supplies for patients needing surgery, cancer treatment, trauma care and other lifesaving treatments. If you're feeling healthy and well, consider booking a donation and making a difference. 

To read more, please visit the Lifeblood website.

Nominations open: 2026 ACT Mental Health Sector Awards 

Nominations are now open for the 2026 ACT Mental Health Sector Awards. These awards recognise the individuals, groups and organisations who make a difference in Canberra's mental health sector, including peer workers, carers, volunteers and consumer advocates. Nominations close 25 September and the awards will be presented on 8 October 2026. 

Nominate someone through this Microsoft form. 

Have your say: Review of the Mental Health Act 2015 (ACT)

The ACT Government is looking at parts of the Mental Health Act 2015 and is inviting feedback from the community. People with personal experience of the mental health system, as well as families, carers and kin, are encouraged to share their views. Your feedback will help improve safety and support for people in the mental health system and those who care for them. 

To have your say and find out more, visit the YourSay Conversations website.  

Take care of your mental health with free online and telehealth support 

If you’re feeling down, worried, stressed, or overwhelmed, Medicare Mental Health Check In offers free support to guide you through life’s challenges. You don't need a referral or diagnosis to use this service. Medicare Mental Health Check In is a new online service offering free and confidential support to help you manage mild mental health challenges, like stress, anxiety, and low mood. 

To find out if the service is right for you, call Medicare Mental Health on 1800 595 212 (between 8:30am and 5pm weekdays, excluding public holidays) or visit the Medicare Mental Health Check In website.  

 
 
 

Give us Your Feedback

What did you think of this issue? Give us your feedback through this linked microsoft form.

Would you like to chat about any of these things? Please email us at [email protected] for your feedback. We would love to hear from you!

 
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**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.

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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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